Michele DePalo (Nicole's mother) posts updates on Nicole and related info.
Crane art from original batik design by Chris Taylor (www.cataylor.com)
Greetings from the Gregorys
2017Nicole Gregory Golf Classic
July 10, 2017
New Van, July 2015
"FRIENDS OF NICOLE GREGORY VAN FUNDRAISER"
Yes, it has been a VERY long time since I updated this website. One of the reasons for this is that I didn't have anything significant, or positive, to report. Now that I do....here I am.
It is now over ten years since Nicole's spinal incident in Nov. 2004, which paralyzed her from the neck down. I am sorry to say, the past year has been one of the most difficult yet. In 2014, Nicole was hospitalized in excess of 12 weeks in total. She's doing better now, but the past year has taken a toll on her.
Quadriplegia affects every system of the body and Nicole's situation is even more complicated because of the surgeries she has had over the years. This has taken a significant toll on her and she's suffered many setbacks, perhaps the most significant of which is her ventilator dependency. She also lost a great deal of weight and is just now gaining some back with the help of enteral feedings. And yet, Nicole continues to deal with her situation with stoicism and grace.
Her frequent hospitalizations have taken a toll on Randy as well, and his ability to devote time to his job. When Nicole is hospitalized, her homecare nurses do not get paid, and consequently there has been a large turnover of nurses at home. This, of course, necessitates Randy having had to take over a large part of her daily care, and train new nurses. This winter has not been kind either. The amount of snowfall in Massachusetts has kept some of the daily nurses from reporting to work, so Randy loses time from his job, again....not to mention the effort it takes to deal with the snow when there is no one else there to tend to Nicole.
They continue to struggle financially, and we help as best we can. They are now in need of a new accessible van for Nicole. Their current one has undergone a lot of wear and tear over the past nine years and needs to be replaced as it is not reliable, and we are concerned for her safety. To this end, friends and famly from Long Island have initiated an online fundraising venture called "Friends of Nicole Gregory Van Fund". We will be posting information about how to donate to this fund both on Facebook, and via emails. If you receive a post on FB, or by email, please help by "sharing" the post, or passing along the email to anyone whom you think would be receptive to this cause. Checks should be made out and addressed to "Friends of Nicole Gregory" and sent to P.O. Box 824, Bellport, NY 11713. An anonymous donor will match any monies that are collected.
We thank you for your support, your generosity, and your concern for our daughter, Nicole.
February 7, 2013
Well, New England is bracing for the first blizzard of the season. We were supposed to leave today for Massachusetts to visit the kids, but considering the forecast, have decided to delay it until Sunday, at the earliest. We haven't seen them since Christmas, which we spent there with them.
Since that time, Nicole was hospitalized...again, suffering from dehydration...again. She's also had a bout of pneumonia in the past few months, and fatigues easily, as would be expected considering all she's been through of late. We're hoping and praying 2013 will be a better year for her, healthwise.
So, hunker down, everyone from Long Island to Maine, and be safe.
It has been a long and difficult five months for Nicole and Randy. Nicole had some serious digestive issues which resulted in several hospitalizations in April, and a difficult surgical procedure. A third hospitalization in early July coincided with her golf outing fundrasier which she consequently had to miss. Over the past six months, she has lost considerable weight and is just recently starting to feel like her old self again, but she still has a long way to go.
I had not been inclined to post any updates in this section because I had nothing positive to report, and my worries over her health made it difficult to sugarcoat her condition. There are still medical issues to contend with – and there always will be – but her condition has stabilized and she is able to get out a little more and enjoy what's left of the summer.
Please continue to keep Nicole and Randy in your prayers. Life has not been easy for them. Those of you who are able-bodied and in good health, be thankful for God's blessings in your life. Appreciate each day, and live your life well.
December 30, 2011
HAPPY NEW YEAR TO ALL!
The countdown is on to 2012. The years seem to be zipping by faster and faster every year. Let's all put away any regrets from the past year and start fresh with a clean slate in the coming one.
Nicole, Randy, Suzie and Enzo spent Christmas with us on Long Island. The family was so happy to have them with us. It was a hectic weekend, but they got to see just about everyone in the family while they were here (my side on Christmas Eve and Nick's side on Christmas Day). (You can view some photos in the Photo Gallery.)
One of our gifts to them was a Kodak Pulse photo frame. Anyone can email photos to them for viewing by emailing jpgs to firstname.lastname@example.org. They are both enjoying it, so please send them some recent photos of yourself, your kids, pets, etc.
While the kids were here (as well as most of our extended families) we celebrated Nick's upcoming 70th birthday early with a couple of birthday cakes. It's a rare occasion when they're around for birthday celebrations on Long Island.
Most of you cannot imagine how big a deal it is for Nicole and Randy to travel down to Long Island. Nicole comes with a lot of equipment, supplies, pets in tow, etc., and Randy has to do all the schlepping as well as all her caregiving (with maybe the exception of a few things I can help out with). It's a big effort and we are very grateful to him for making the sacrifice for us.
May 2012 bring unexpected joys to us all. Happy New Year!
We had a nice Thanksgiving with Nicole and Randy up in New England. We paid a visit to the Woodburys in Wells, ME, on Thanksgiving morning, then drove inland to Berwick, ME, to spend the rest of the day with Randy's family at his mother's new home there. Plenty to eat and great company. A good day!
Unfortunately, I was suffering from a cold, which I inadvertently passed on to Nicole, even though I was careful to avoid contact with her. Of course, having a compromised respiratory system, it hit her very hard, and she missed some important appointments the following week, which I am feeling so guilty over.
We are looking forward to having them on Long Island for Christmas, which isn't very far away. Please check out the photos in the Photo Gallery.
All the best to you and yours in the holiday season.
October 22, 2011
weekend I attended the 6th annual Working
2 Walk Conference, a yearly event
sponsored by Unite to Fight Paralysis, a not-for-profit organization committed to continuing the work of
Christopher and Dana Reeve.They
are the voice of cure advocacy for people living with paralysis. This year it
was back in the DC area, at the Hilton in Rockville, MD.I traveled by Amtrak from Dillon, SC to
Alexandria, VA (7 hours), where my niece, Pam, picked me up.Pam is a physical therapist with a practice
in Arlington and she has attended four of these events.I stayed with her in Arlington,
returning home (via Amtrak) on Tuesday, Oct. 18th.
must say, this being my third W2W event, that the organizers (mostly women, by
the way) do an extraordinary job in bringing together representatives from all
the top research companies, the most brilliant neuroscientists, and the top
medical personnel in the area of spinal cord rehabilitation. We were fed from
the minute we got there until the time we left.Wonderful lunches, cocktail party, and snacks available for
us all day long.The staff at the
Hilton was amazing in handling the some 180 or so attendees.
to Sue Maas (herself a C4 SCI
crusader and one of the founders of Unite to Fight Paralysis and its current
president. Donna Sullivan, who
put together the program, is the mother of a child with SCI.These people, along with many
other dedicated volunteers, work tirelessly to bring together the SCI
community, caregivers, practitioners, biotechs and advocates to exchange
information and ideas relative to working toward a cure for paralysis and
improving the lives of those living with spinal cord injury (SCI).It is the only such organized event of
this magnitude in the country (perhaps in the world).
first day of the conference we were exposed to a barrage of scientific research
data from a variety of companies currently experimenting with stem cell
transplantation in animals and, in some cases, humans.(I think I finally know the difference
between an oligodendrocite progenitor cell and a Schwann cell, and
what chondroitenase is expected
to do when injected around the site of a spinal cord injury.)
should be noted that the FDA is extremely reluctant to approve any clinical
trials involving cervical injuries due to the higher risk involved to the
patient, which is why studies are currently being done in thoracic cases of
SCI.Nothing is currently being
studied in chronic SCI, only acute and subacute (a few months post injury) and
even then, only safety trials.Small steps.
attendance was a foreign contingent of advocates (all in wheelchairs) traveling
from Italy, Ireland, England, France, and Japan.All very articulate speakers, they are very impatient with
the slow progress of curative therapies for SCI, and do not understand why 50%
of the money being put into research is not used to help the chronic SCI
community.As the very passionate
Italian put it:“I don’t get
it!Do you see any acute cases
here?What about us?I just don’t get it!”
perfect example of grace under fire, the FDA rep (Heidi Marchand from the Office of Special Health Issues) had her
work cut out for her in explaining in detail the very involved and lengthy
process to gain FDA approval for drugs and clinical trials.I spoke with her later in the day and
congratulated her on a great presentation and told her that the FDA is
fortunate to have her represent them, given the bad rap that they always
Corp. was the first company to
receive FDA approval for human clinical trials (Phase I – “safety”).The first human stem cell
transplantation was done one year ago, with no negative effects thus far.(It goes without saying that nothing
positive has come out of it at this point, either, but they are not concerned
with that at this juncture.)Of
course, they have many other irons in the fire, so to speak, but I won’t go
into that here.
and I sat with, and lunched with, the speaker from Geron Corporation, Dr.
John Gold, PhD, Sr. Director of Neurobiology, a cordial and forthcoming gentleman who traveled from California on
short notice, replacing the advertised speaker who cancelled at the last
minute.It is interesting to note
that when InVivo’s rep. spoke, he was excited to announce for the first time
publicly, that Ed Wirth (formerly
medical director of regenerative medicine at Geron) was now going to head
InVivo’s scientific division.In
the meantime, Geron’s had several changes in their upper administration since
Wirth’s departure, the latest being a big surprise to everyone at Geron (this
from our friendly Geron rep.)I
might add that it was Dr. Gold’s misfortune to be sitting with two disgruntled
shareholders.He offered us a few
raffle tickets and a jar of crème brulee (part of his “care package” for being
a speaker) but that doesn’t quite make up for my $6,000 (paper) loss on Geron
of the other things going on in the scientific world are as follows:InVivo Therapeutics is working on polymer scaffolds to bridge the gap in
the spinal cord after SCI; Acorda Therapeutics’ research involves the use of the drug chondroitenase
in treating spinal cord injuries; Neuralstem is in clinical trials for stem cell treatment for
ALS; The Miami Project’s Dr. Dietrich spoke on therapeutic hypothermia, which is already being used in the
treatment of acute SCI; and Dr. Silver from Pace Univ. astounded us with his report of a rat injured at C2
level who was breathing on his own three months after a bridge graft was placed
above and below his lesion (they actually put these rodents on
ventilators).You haven’t lived
until you have listened to the amplification of a rat breathing, snoring and
Wise Youngof the Keck Center, Rutgers (world-renowned neuroscientist
in the field of SCI) did not make a presentation at the conference, but was
available at the break out sessions – a smaller, more intimate venue where one
could ask questions and gain clarification not otherwise gotten from the
presentations.As always, his
sessions were overflowing with attendees. This year Dr. Young extolled the
benefits of whole body vibration to stimulate the CNS (central nervous
system).This treatment affects
muscle chemistry in the skeletal system and assists with bone density, among
ended day one with a reception in the Atrium of the Hilton (2 cocktails
included) and got another chance to meet and greet.Pam and I like to network.We have a good time going to the “classes” together.I like having her with me because she
can speak with the clinicians and scientists more on their “level” being a
career physical therapist with her own practice.We meet members of the SCI community and their caregivers
and trade stories and experiences, (ours being Nicole’s, of course).
recognized a young man I had met at this event a few years ago who is the only
other person I ever met whose paralysis was due to a spinal cord stroke, much
like Nicole’s.His injury is also
high cervical (C2-3), and he is still ventilator dependent.He lives with his family and is 18
years post injury.His sister is a
PT and lives nearby.He doesn’t
have the same level of nursing care as Nicole, but claims to be in good health
with relatively few issues, other than low blood pressure and poor body
temperature regulation.He has a
brand new wheelchair that he controls with a chin mechanism, and he uses a
stick to operate his computer.He
cannot use the voice-activated equipment because he is unable to speak
only attended day one, and I didn’t get to spend as much time with him and his
lovely family as I wanted to, but I do have his email address and may, from
time to time, touch base with him.
day two, Pam and I sat with two women from Minnesota (a PT and an OT) who work
at a wonderful clinic in Minneapolis (Courage Center) that incorporates all levels of rehab equipment, in
addition to clinicians of varying disciplines, all under one roof.They offer a three-month intensive
rehab program and have an agreement with nearby hotels for discounted housing
for the term of the patient’s stay.Pam may stay in touch with them.
enjoyed meeting a lovely woman from Richmond (who hails from New Jersey) who is
a spunky advocate for her son who suffers from a extraordinarily rare condition
called Blue Rubber Bleb Nevus Syndrome (BRBNS).During a surgery to correct his problem, he became paralyzed
at the thoracic level.He,
however, has adjusted well, being young, and is very involved in sports
programs for the disabled. “Jersey” (as Pam nicknamed her), was attending the
rally on Capital Hill on day three.
in mind that even though paraplegics appear to be “normal” from the waist up,
they still suffer the same bladder, bowel and sexual issues as quads, the only
difference being that most of them can handle things themselves.But even the lower quads have limited
hand control and require assistance with these tasks that we able-bodied people
take for granted.I just thought
I’d pass that reminder along.
spoke with a woman whose child (a twin) sustained an SCI at birth (a breach
birth that was mishandled.As it
turns out, she and Pam remembered each other from a previous W2W event.The last time, she attended with the
twins, but this year she was alone.Her boys are 8 years old now.
presentation that I found most applicable to Nicole was that of a registered
dietitian (Susan Testa) who spoke
on the “gut” (digestive system).Given Nicole’s major digestive issues last year, I paid particular
attention to what this woman had to say.Most I already knew, having been through it with Nicole, but she really
emphasized the daily use of probiotics as a necessity in maintaining the
integrity of the “gut”.Nicole,
being a registered dietitian herself, is a proponent of probiotics, and I’m
sure she will tell me that what I have to report is nothing new to her.Thankfully, whatever regimen Nicole is
currently on seems to be working for her.Much to my dismay, Ms. Testa was not available in break out sessions or
to speak with personally.Had she
been, I’m sure I would have monopolized her time.
is the main component in my decision to attend these symposiums.I find it most interesting to meet the
scientists and physicians, as well as those in the SCI community and their
caregivers, to pick their brains for useful information I can take back to my
daughter and her caregivers.
am in the unique position of being the parent of someone with SCI, but not her
caregiver.My purpose, as I see
it, is to try the best I can to make her life better by finding out what
options are open to her.And by
sharing her situation and experiences, maybe I can enlighten others.Being in the Boston area, Nicole is
undoubtedly exposed to cutting edge medical technology.Also, she has the best rehab equipment
available and the feedback I can provide about that to others might make a big
difference in their decision to procure these devices themselves.
for example, the Functional Electrical Stimulation (FES) bike that she has used
for six years.Reps from Restorative
Therapy (the manufacturer of the
bike) were on hand demonstrating the equipment, and I was available to testify
to its effectiveness in keeping Nicole healthy.And by the same token, they were available for me to discuss
some recent difficulties she has been having and to determine the best way to
proceed in attempting to rectify them.
day two, we heard from one of The Shepherd Center’s research team (Dr. Tansey) about their efforts with robotic assistance in
locomotor training (treadmill walking) and the benefits of FES in combination
with locomotor training.Dr.
John McDonald, of Baltimore’s Kennedy
Krieger Institute, spoke on Activity
Based Rehabilitative Therapy (ABRT) and its benefits toward functional recovery
and overall health of the SCI individual.
had his whole team from Kennedy Krieger with him, and during his break out
session, Pam and I were able to discuss with them some of Nicole’s recent
issues with her FES bike and its upper arm cycling counterpart.McDonald not only utilizes this
equipment in his rehab center, but was instrumental in its design, development
and manufacture, and up until a year ago, was involved directly with
Restorative Therapies, Inc.Nicole
was one of the first patients at The Shepherd Center (in Atlanta) to use RTI’s
FES bike when it first received FDA approval in July of 2005, and she has used
it regularly ever since, clocking in at least 30 miles a week on it.
Monday evening, the attendees were all invited to Kennedy Krieger in Baltimore
for a reception and a tour of the research lab and rehab center.Since we had already done this in the
past, and it involved an hour commute to and from, Pam and I decided to pass.Speaking for myself, at this point I
was already reeling from so much input, and weary from the long days at the
conference.We just wanted to go
home, relax and digest all the information gleaned from the event.
would not even consider attending this event without my niece, Pam.A key factor, of course, is that she
lives in Arlington, VA, which is most convenient.She is passionate, outgoing and extremely bright and
articulate.She translates the
things I don’t completely understand, and is, as I have said, better equipped
to communicate with the scientific and medical community. Most of all, she is
deeply concerned about her cousin’s wellbeing and has, from the outset seven
years ago, been there for us.An
added bonus is that she is a lot of fun to be with and a real blessing in my
life.I cannot thank her enough.
the words of Geoff Kent of SCI
Sucks:“Live a good life, but fight for a better one.”
those interested in further information on anything I have discussed above,
please refer to the following websites: www.unite2fightparalysis.org;
www.restorative-therapies.com; www.invivotherapeutics.com; www.geron.com.; www.neuralstem.com;
www.themiamiproject.org; www.scisucks.org; www.nicolegregory.com.
Thanks for your interest.
“You miss 100% of the shots you never
take.” (Wayne Gretsky)
July 17, 2011
Well, the Annual Golf Outing fundraiser was a huge success, as usual. Randy did a fine job in planning and executing this event (which helps with Nicole's expenses). Many thanks to those who participated in either the golf, or lunch, the contributors to the raffle, tee sponsors, workers, etc. Nick and I particularly want to thank our friends from Long Island who travelled to Massachusetts (yet again) to participate in this event. We are very much indebted to you for all your support over the years.
As you can see from the photo above, Nicole looks great....tanned and beautiful as ever. The day was very hot and humid, but even though her temperature control does not function normally as our does, she was a trooper and stayed till the end. She was, however, glad to get home to her air-conditioned house and was physically drained by evening. She's been feeling well, for the most part (although somewhat thin by my standards).
Now that this outing is behind them, and Randy's term as Rotary president is over, life will hopefully get a little "easier" for them. Under the circumstances, it could never, ever, get "easy".
They've hired a new nurse, who is starting this weekend. We'll see how that goes. In the meantime, Greg, Jacquie, Karen and Tammy are the "regulars" who are worth their weight in gold.
I got a bit of razzing when I wore my Yankees shirt last weekend (which is, of course, why I wear it). It's so much fun to antagonize those Red Sox fans!
Nothing much else new to report. Check out the golf outing photos on the Fundraisers page, and a few others on the Photos page. Till next time.
yesterday, live for
today, hope for
I know it's been awhile since I have updated this website. It's not due to laziness or lack of time, but rather due to lack of information to share. Life has been pretty uneventful for Nicole and Randy, and I guess that's good, for the most part.
We visited them in Beverly last weekend so that her Dad could spend Father's Day with her. It was a short visit, but a good one. Randy barbecued for us on Sunday, and we went out to dinner in Essex on Monday night. Nick fixed a few things, and I did a little cleaning, but basically it was a relaxing time. Nicole is feeling well and has put back some of the weight she lost due to her illness last year, but her Mom (me) thinks she is still too thin and needs to put on some more. (I wish I had that problem.) Naturally, she would not let me take her photo.
They are in the market for another nurse (for weekend duty). The nursing situation is a recurring problem and is a major stressor for Randy, whose shoulders it falls on, along with everything else. In order to put time into his job, he has to make sure all nursing shifts are covered or Nicole's care reverts to him. It impacts Nicole strongly because she is the one who has to get used to new caregivers on a continuing basis, but she handles it amazingly well. She has the final say on the new hires, after the interviews are conducted.
Randy has opened a new office at the Cummings Center in Beverly, just 5 minutes from home. He is much happier not having to drive to the New York Life office in Waltham, especially with the price of gasoline.
Speaking of driving, Randy is in need of a car. He and Nicole have been sharing the van, but Nicole is not happy about that. If anyone knows of a good used car, please let him know.
It's that time of year again when plans for the Nicole Gregory Golf Outing are in full swing. It's being held at the same place as the previous several years. Golfers seem to really love the course at Ferncroft. Information on the outing is published above.
The kids came to Long Island for Easter and I have included some photos from then in the Photo section, along with a few from this past visit.
More to come after the golf outing......
Have a safe and happy summer.
To have God on our side doesn't mean sailing on a boat
with no storms,
it means having a boat that no storm can sink!
March 1, 2011
I realize I haven't updated in quite a while, the reason being that there isn't a lot of news forthcoming from Massachusetts. Nicole's Dad and I have made a few trips to Beverly to see Nicole and Randy, and both times we were inundated with snow. The long, hard winter has not been kind to them. Nicole has been more housebound than ever, but does still manage to get out to her therapy and doctor visits. Hopefully, that will change as the weather improves.
I am happy to report that Nicole is feeling much better and is pretty much back to "normal", after a very long and difficult fall and early winter. It seems she has rounded a corner and we hope and pray she stays well and "on course". Life for them is difficult enough without additional health issues to deal with.
They are anticipating visiting Long Island in the next month or so, which will be a treat since they haven't been here in over a year! Please continue to keep them in your prayers.
When we are no longer able to change a
situation, we are challenged to change ourselves.
Viktor Frankl - from Man's Search For Meaning
Dec. 23, 2010
The Christmas season is upon us and we look to the new year with renewed hope. Unfortunately, the past four months have been rough for Nicole and Randy, including several hospitalizations for Nicole, the last being at Boston Medical Center where she was under the care of Dr. Steve Williams and a staff of specialists. We believe the cause of her health problems was finally diagnosed properly. She is regaining her strength and is, hopefully, on the road to recovery. Quadriplegia affects every part of the body, and it is of the utmost importance to take care of issues as soon as they arise.
Please keep her, and Randy, in your prayers as her health and well-being directly affects him as well. All the best in the new year!
July 19, 2010
We enjoyed another successful Nicole Gregory Charitable Golf Outing on Monday, July 12.
Thank you to all who helped make it a great day.
You can view photos of the outing on the "Fundraisers" page.
The people that matter are the ones that are there for you all the time,
not the ones that come and go as they please.
February 16, 2010
Has everyone in the northeast had their fill of snow yet??? Even those of us who have retreated to the southern part of the country have had a bit of the white stuff. Yes, it snowed in Myrtle Beach last week! As of right now, it is snowing in Massachusetts, and Nicole reports that they expect about five inches. She can't wait for spring, and she's certainly not alone.
Not much to report. Nicole has a new nurse, Diane, who took Janine's place. She seems very competent and Nicole and Randy like her very much.
In the Photo Gallery, I have posted some photos of Nicole using the new arm cycling attachment to her stim bike. She's very conscientious about her exercising and now uses the equipment five times a week. The leg cycle – three times a week, 11 miles a day; the arm cycle – twice a week, an hour per session.
Till next time...
Life is not the way it’s supposed to be, it’s the way it is.
The way you cope with it is what makes the difference.
December 29, 2009
I hope the holidays met everyone's expectations. We were happy to have Nicole and Randy with us on Long Island for Christmas for the first time in five years! In my family, on Christmas Eve, all members were present and accounted for (from four different states), and it's been a while since that was the case.
For our immediate little family, the Christmas season is difficult and not one of our favorite holidays. But with the exception of a few medical issues, I think we all fared pretty well. Nicole was concerned about Enzo with our tree, but he was totally unimpressed by it and didn't get into too much trouble at all. He is such a friendly, social cat, and a joy to have around, as is Suzie. (Photos in Photo Gallery).
Todd and Kim Harper (who live in Connecticut) were on the Island and came by with their little boy, Zachary, which was a treat. Zachary is such a delightful little tyke, and so adorable. (Photos in Photo Gallery.) Todd, Kim, Randy and Nicole were all friends from college (University of Rhode Island).
Due to the wind and rain storm on Saturday, the kids had a rough ride on the Pt. Jeff Ferry to Bridgeport, which was over an hour late to begin with. Luckily, we supplied them with food, so they had something to do while they waited. The cat was sedated and asleep in his crate, and Suzie, of course, is never a problem. Nick and I were so afraid one or both of them would get seasick, but they were okay and the rain had let up in Connecticut during their drive home to Massachusetts.
Nicole is well healed from her recent surgery and the results make a world of difference in their lives. Life is so much better without catheter tubes. As far as caregivers, Janine is no longer with them, but two new nurses were hired and will start soon. And so the cycle continues... And speaking of cycles, Nicole is doing very well with the new arm cycling attachment to her FES bike. She uses that three times a week, as well as the bike three times a week. Hopefully, in time, some shoulder and arm muscles will awaken. We shall see. In the meantime, it's a great cardio workout for her.
The days are getting longer now, and we are hoping we've had the majority of our snow for the season (we got 27 inches where we live on Long Island). We are embarking on the second decade of the century. Seems like only yesterday we were in fear of Y2K. We pray 2010 will bring good things to our dear daughter and her husband. Please keep them in your prayers as well. My best wishes for peace and prosperity in the coming year.
Happy New Year!
thinker does not refuse to recognize
the negative, he refuses to dwell on it.
thinking is a form of thought which habitually
looks for the best results from the
Norman Vincent Peale
November 15, 2009
I am happy to report that Nicole has recovered completely from her surgery in October. She had the last tube removed last week and is now completely catheter-free! It's a big change in her life and she is still becoming accustomed to her new "freedom", so to speak.
She is excited about the arrival of the new arm cyling attachment to her FES bike. It arrives on Wednesday, along with the technician from Baltimore who will set it up and train the caregivers on its use. Nicole hasn't been able to use the FES bike for over a month and misses it immensely. She enjoys the exercise and the positive effects it has on her legs, and now, hopefully, on her arms. Next time I'm in Massachusetts, I will post photos of Nicole using it.
In this season of thanksgiving, we are, indeed, grateful for each step forward and every blessing from above. A very happy Turkey Day to you and yours.
Forget about the end result: When you
arrive where you want to be,
you'll just begin a new journey. So
enjoy each step along the way
and keep in mind that every goal is
possible from here.
Just do one thing, one day at a time.
October 19, 2009
Reports from Massachusetts are that Nicole is doing fine. They had a good weekend. No medical issues. She's even planning to return to outpatient physical therapy tomorrow, only one week after getting out of the hospital. We are so grateful for God's blessings. She had an amazing surgeon, and her homecare is exceptional as well. One more little hurdle to get over and she'll be home-free!
More next week...
October 13, 2009
GOOD NEWS!! Nicole is home from the hospital. Her surgery was one week ago today and she is doing very, very well and so happy to be home. Now Randy and the home staff take over her care once again. We are all so relieved and grateful for God's blessings in getting her through this surgery safely, with no complications, and pray that the rest of her recovery goes as smoothly. Thanks to all of you for your good wishes, thoughts and prayers.
October 9, 2009 (10:00 AM)
Nicole had surgery on Tuesday, October 6th, and we are happy to say she came through it with flying colors! It was a long and complicated procedure which will ultimately make her life easier, but the recovery is long and may be difficult. She is a trooper, however, and is up to the challenge. So far so good.
Because of her high quadriplegia, there are major issues that have to be dealt with that able-bodied people don't have to be concerned with, but the nursing staff is on top of things, and either Randy, Nick or I are with her at all times during the day, as well as some of her own home care nurses. She is at Lahey Clinic in the Surgical Intensive Care Unit, and probably will be until next week. Her surgeon, John Stoffel, is a marvelous surgeon and an especially kind man as well. He is very happy with her progress, and we are so thankful.
Nicole's major complaint is that she is HUNGRY, having not eaten since last Friday! Her surgery involved her intestines, bladder and appendix, so it was no small thing. Hopefully, she will be able to at least drink something today.
Many good wishes have been extended and prayers said, and we appreciate all of your concern. I hope to be able to continue to share good news of her progress, so keep checking back.
October 1, 2009
Hello friends and family,
It's October and the days are getting chilly. I hope you all enjoyed your summer and are ready for the joys of fall (raking leaves, walks on a crisp autumn day, carving pumpkins, etc.).
Nicole and Randy were on Long Island last weekend to help celebrate Nick's and my 40th wedding anniversary. There was a dinner party at a local restaurant for family and a few close friends. Our anniverary isn't till mid-October, but Nicole and Randy weren't available then, so we celebrated last weekend. We had a lovely time and spent a great (albeit short) weekend with the kids. It was so great to have them here, as they hadn't visited since May.
Of course, Enzo and Suzie entertained our guests with their antics, as always.
Although poor Randy had to suffer through the anguish of the Yankees sweeping the Red Sox (and clinching the AL Eastern Division title), his beloved Patriots did win, so he left happy.
We will be spending some time in Massachusetts in the next couple of weeks and I will keep you updated on the course of events up there.
Be sure to check the Photo Gallery soon for new photos.
Check back soon..
I asked the Lord to bless you as I prayed for you today, to guide you and protect you as you go along your way. His love is always with you, His promises are true, and when we give Him all our cares you know He will see us through. So when the road you're traveling on seems difficult at best, Just remember I'm here praying and God will do the rest.
July 22, 2009
Thank you to all who contributed in some way to the success of the annual fundraiser last week. Whether you participated in the golf, or luncheon, donated a raffle prize, bought a tee sign, or made a monetary donation, we are extremely grateful for your continued support.
Our special thanks to all the friends who traveled from Long Island (and New Jersey) to attend, and my niece, Pam, who came up from Virginia to help out. Randy’s dad, Bob Gregory, drove up from North Carolina with his new wife, Sue. Photos of the event are posted in the Photo Gallery.
Nicole reports that the arm cycling attachment for her FES bike will be ordered sometime next week. They have to send the FES bike away to get fitted with the attachment and have its computer replaced. She is very anxious to start exercising her upper body.
Nicole’s birthday is Saturday, July 25th. I wish we were up there to spend it with her. (When I think of all those fancy decorated cakes I used to make for her birthday parties...) She said the only thing she really wants this year is a carvel cake. I hope she gets it.
"Success is not measured by what a man accomplishes but by the opposition he has encountered and the courage with which he has maintained the struggle against overwhelming odds."
Michele's update, June 25, 2009
We here on the Island are all wearing caps. Not baseball caps, or graduation caps, but mushroom caps. With all the wet weather, there is fungus among us. Will there ever be a summer of 2009?
Despite the wet weather, a few weekends ago, Nick and Randy built a boardwalk for Nicole so that she could easily get herself from their deck out to the patio at the back of the yard. I have posted below some of the photos of the project. They worked from 10am to 7pm on a wet and dreary Sunday. But the job got done and now nurse Greg is busy dressing up the patio with potted plants and flowers to make her surroundings attractive when she is out there. The boardwalk was his idea, so he was especially thrilled about it, and so was Nicole. Now, if only the weather would cooperate.
We enjoyed meeting Marianne Hawkins, the newest edition to the staff, a nurse from Rockport, MA. She is a happy, upbeat person with a genuine interest in Nicole. (Who wouldn't be happy living in Rockport?)
The Nicole Gregory Golf Classic fundraiser is coming up soon, Monday, July 13th. Randy is expecting a good turnout this year, weather permitting. Twelve of Nicks golfing buddies from Long Island are planning to attend, as well as some of our relatives. We always have a good time. Thanks to all of you who have donated money, tee sponsorships, or raffle prizes. Items are still being collected. Your continued support is heartwarming and much appreciated.
Not much else new, but you can expect another update soon after the golf outing, complete with lots of photos.
In the meantime, do a little sun dance (is there even such a thing?). A little sunshine goes a long way to make the days just a little bit brighter.
"Change will not come if we wait for some other person or some other time. We are the ones we've been waiting for. We are the change that we seek."
It's been awhile since I've posted an update. Not much has been going on other than the usual day to day stuff. Thankfully, Nicole was pretty healthy throughout the winter, barring the usual issues she battles on an everyday basis. The winter was long and brutal, and Nicole is happy to be out and about without layers and layers of clothes...finally.
She and Randy were on Long Island on Mother's Day weekend, and we were thrilled that they were here! The last time they visited was Thanksgiving! All my nieces and nephews were in town and we had a houseful on Saturday night. Chinese food for fifteen! It was fun. Then we visited with Nick's family on Sunday so she got to see those aunts, uncles and cousins as well. Suzie and Enzo did their best to entertain us, as usual. All in all, it was a great weekend.
She is anxious to get going with the flowers and plantings for their yard, so she and Greg (her nurse) will be shopping and planting probably next week. Randy's been working on the lawn and shrubs, so things are progressing. At Greg's suggestion, Randy and Nick are planning to do some work in their yard so that Nicole can go between the deck and the patio at the other side of the property. This involves another ramp and a walkway. It is really a pretty backyard and Randy takes a lot of pride in it.
Nursing coverage continues to be a tough issue. A typical scenario: they interview a bunch of people, hire one or two... they train for a few weeks, then leave them in the lurch. As of this week, two new ones have been hired and will be in training. Then we'll see. In the meantime, Randy's work shedule is suffering because two mornings a week he can't leave the house before noon. This has been, and continues to be, one of the most difficult issues facing them since the outset.
Randy announced that his father, Bob, is getting remarried in a few weeks, so Randy will be flying down to North Carolina to attend the wedding. Our best wishes to the couple. We will get to meet the future Mrs. Gregory at Nicole's golf outing.
And speaking of the golf outing....it will take place on Monday, July 13th, at the same place as last year's....Ferncroft Golf and Country Club in Danvers, MA. The save-the-date cards are going out this week with the particulars. As always, we are looking for golfers, tee sponsors, raffle prizes, and cash donations as well. Nicole's medical insurance costs are high, and some of her therapy and medical expenses are paid out of pocket, so any assistance would be welcomed.
You may want to check out some family photos from last weekend in the Photo Gallery. Information on the 5th Annual Nicole Gregory Golf Classic will be posted on the Fundraiser page shortly.
Enjoy the beautiful colors on spring's palette.
The period of greatest gain in knowledge and experience is the most difficult period in one's life. Through a difficult period you can learn; you can develop inner strength, determination, and courage to face the problems. His Holiness the Dalai Lama
February 12, 2009
A lot of you keep asking me for updates, but there's not much news to tell.
Nick and I are back in NC after visiting with the Gregorys in Mass. last week. The winter doldrums have set in big time. Snow is piled up along the roadsides. Nicole doesn't like to venture out on the really cold or snowy days, what with her temperature problems and all. She does get to therapy, and an occasional movie with Randy, but it requires a lot of bundling up. Nick and I gave them a remote car starter for Christmas, which helps a little, and is probably more of a gift to the caregivers than anyone.
We met the newest nurse, Salina, who is still training (there is a lot to learn). She will be working on Monday and Thursday mornings. So, now they are be back to four nurses and a home health aide.
Nicole is still dealing with low blood pressure and low temperature episodes. It has become a way of life for her. All in all, things are pretty much status quo, which I guess is okay.
Hopefully, they will be getting the arm stim attachment for the bike soon. The wheels of progress grind very slowly up there, which takes some getting used to on our part.
Nicole doesn't always like to have her photo taken, so the animals will have to suffice. We are always amused by the way the dog and cat play, and get along so well together. They are both such social animals and give us all a great deal of pleasure.
Happy Valentine's Day!!
November 20, 2008
The exciting, ground-breaking election is, thankfully, behind us. Whatever our politics, we must hold fast to the belief that this change will bring renewed hope for our country’s future. And, selfishly, we celebrate the anticipated support of embryonic stem cell research by this new administration.
November 7th marked the fourth anniversary of Nicole’s “injury” (they call it her “Alive Day”)…a day for looking back with pain and sadness, but also with thankfulness…and looking ahead with resolve…but never, ever, acceptance of the status quo.
Nick and I spent a few days with Nicole and Randy in MA at the end of October. I should say, Nicole and Randy…and Enzo and Suzie…and Jacqui, Greg, Karen, Janine, Jennie and Sugaree. In the few days we were there, we got to be with all of her caregivers. They are like extended family to us. We also got to see all of Randy’s family, which was an unexpected treat.
Halloween is always a lot of laughs at the Gregory household. Poor Suzie was dressed as a black cat, which she definitely was not happy about. Enzo, as you can see from his photos in the photo gallery, was forced into a chicken costume. (That lasted about 3 seconds.) Sugaree, on the other hand, was a good sport in her rooster attire.
A highlight of our stay was a visit from my great-niece Joanne, who lives in California. She was in town for the Halloween festivities in Salem. She had a nice visit with Nicole on Saturday, and we all went out to lunch at the Black Cow in Hamilton.
Nicole is on a new medication for her low blood pressure and it seems to be helping some. While her pressure is still low, it wasn’t dangerously low, and she didn’t seem to be too bothered by dizziness while we were there. But things change day to day with her, and she still suffers from mild hyperthermia.
The purchase of the upper arm stim attachment for Nicole’s FES bike is in the hands of the manufacturer’s rep who is pursuing insurance reimbursement for at least a portion of its cost. We’ll see how that goes.
Nicole has discovered Facebook and is rumored to be addicted to it. At Randy’s suggestion, I opened up my own Facebook account so that I can keep up with what’s going on with her (since I so rarely get to speak with her on the phone). I find myself spending way too much time checking into other people’s lives. It is addicting! And what’s worse is…I’m probably the oldest living person on Facebook!!
The kids are expected on Long Island for Thanksgiving. The family is looking forward to that. We’ve made some changes to the house and yard that they haven’t seen, so I’m anxious to get their reactions.
It’s a warm and wonderful feeling to have the family together at the holidays. Given the difficult economic climate and unsettling world, in the spirit of the season, I wish you all “enough”. Happy Thanksgiving!
I wish you enough sun to keep your attitude bright.
I wish you enough rain to appreciate the sun more.
I wish you enough happiness to keep your spirit alive.
I wish you enough pain so that the smallest joys in life appear much bigger.
I wish you enough gain to satisfy your wanting.
I wish you enough loss to appreciate all that you possess.
I wish you enough hellos to get you through your good-byes.
Michele’s update – October 1, 2008
Autumn has arrived! Can you believe it?! Pumpkins abound at the farm stands, and witches and goblins line the store aisles. It was a beautiful September on Long Island. Nick and I are in North Carolina now to enjoy a bit more warmth before the cooler weather finally sets in.
We were delighted to have Nicole and Randy with us Labor Day weekend on Long Island. It was Enzo’s first visit, and he had everyone bewitched. He’s maturing into a strikingly handsome feline. He and Suzie are quite a tag team when they get going. They’re such fun to watch! They performed on several occasions for my family and some others who stopped by to say hi.
While we were all dining at the Bellport Country Club one night, we ran into some friends, the Dallins and the Hannons. They, like all our friends and acquaintances, always ask about Nicole, and I was happy they finally got a chance to see her and Randy.
Kim and Todd Harper (friends of Nicole and Randy from Connecticut) were also on the Island to visit family and drove to our house for a nice visit. They all attended URI together and have been friends since then. It was great to see them and their adorable new baby, Zachary. (See photos in the Photo Gallery)
Nicole’s nurse, Debbie, is no longer with them, so, alas, they are in the market for yet another part-time nurse for a few hours a week. It’s an ongoing battle. In the meantime, Randy takes over the duties…again.
Aside from Nicole’s ongoing issues with low blood pressure, things have been fairly quiet on the Gregory home front in Massachusetts. Nicole is very interested in purchasing the arm crank attachment for her FES bike and was finally able to trial it at a new facility, Journey-Forward, in Canton, MA, this past week. She was tested by the head clinician from Restorative Therapies (the manufacturer) who was there that day to demonstrate it. I am happy to report that the trial was successful! Even though Nicole is nearly four years “post injury”, her upper arm muscles did fire when electrically stimulated and she was able to cycle with her arms. So it looks like the purchase is a “go”.
Journey-Forward is a relatively new exercise facility that caters to the spinal cord injured and is about an hour from Beverly. For those who wish to know more about it, their website is www.journey-forward.org.
Some of you may have noticed that I have updated the website. It has a new look, and I’ve gotten many compliments on it. Many thanks to Chris Taylor for allowing the use of her batik crane design to decorate the website pages. She is one of the most talented artists I know, and you can see more of her designs at www.cataylor.com.
Along with the new look came some new problems (although my nephew insists they are not connected). It seems that “spam robots” have found their way onto the message board. (Not just ordinary spam, but Viagra and porn ads, as well.) I don’t understand it myself, but I am told that there is nothing I can do to prevent this. Consequently, I am on the website many times a day checking the message board in an attempt to delete these messages before they are seen by viewers. My apologies to anyone who has been witness to these offensive spam messages. I’m trying as hard as I can.
Nick and I plan to go to Massachusetts the end of October, soon after our return to Long Island. I hope I’m there for Halloween again. Those critters make great photo ops!
Till next time…
When we do the best we can, we never know what miracle is wrought in our life, or in the life of another.
Michele's update, July 25, 2008
Today is Nicole’s birthday! She and Randy will be going out to dinner this evening. We sent her flowers and a package, but it’s not the same as being with her in person.
I think back to all those birthday parties when she was a little girl. I would bake and decorate special cakes. There was always a big family gathering, and a kids’ party, too. Since her birthday is in July, there were always fun things to do. One year I took all the little girls to the Gateway Theater’s children’s show, then back to our house for hot dogs. Another year they dressed up in costumes (some of which were borrowed from my theater group), but most of the time there were pool parties with water balloons, games, and endless cries of “Marco - Polo”.
I reminisce because today my cousin’s young granddaughters were frolicking in our pool and it reminded me of those good old days. You don’t realize it when you’re in them, but when you look back, they were the best days of your life. So, those of you who have young children, hug them and enjoy them, and keep them close, because this time will never come again.
Now that I have waxed nostalgic, on to current stuff. The golf outing fundraiser we had on July 14th in Massachusetts went very well. Even though the weather forecast was grim, the day turned out to be quite nice. The golfers enjoyed the course at Ferncroft. It was challenging, but beautiful, and they all had a great time. The staff at Ferncroft was very accommodating. A nice lunch was served under a large tent that was quite comfortable. We had about 60 items for the Chinese auction and those in attendance had fun choosing which item on which to take a chance. Randy reports that the event was quite successful financially…the best so far. (Photos are on the Fundraisers page.)
We, again, would like to thank all who participated in the golf outing in one way or another. I would especially like to thank all the guys (and gals) who came up from Long Island to attend, as well as some of our family. Pam drove up from Virginia and Bob Gregory flew in from North Carolina. He stayed for ten days (a little break from the hot weather down south).
Nicole has an appointment to demo the Functional Electrical Stim attachment for her arms at Spaulding Rehab in a few weeks. If she is able to handle it without any negative physical impact on her, they will purchase it from RTI. They have to be absolutely certain before investing the $6,000. This piece of equipment will attach to the bike, but she must use it separately from the bike. They can’t be used together. She was very reluctant to return to Spaulding because of all the bad memories from that time, but it is the only facility in Boston that has the equipment. It was either that or drive down to Maryland to RTI’s headquarters, or the Kennedy Krieger Institute.
When we were up in Massachusetts, we fell in love with Enzo, the new Egyptian Mau kitten that the kids have. He is quite beautiful and so friendly! His photos are on the Photo Gallery page. He and Suzie look so cute together sitting on Nicole’s lap. He is going to be one elegant cat when he grows up!
We’re hoping that Nicole and Randy get down to Long Island sometime in August. Most of the family hasn’t seen them since last Thanksgiving! They miss her! We all do!
Have you noticed the new website design? I would like your comments. There is a new page called “Contact Us”, so send me a note, if you don’t mind.
Till next time…
Look not mournfully into the past, it comes not back again. Wisely improve the present, it is thine. Go forth to meet the shadowy future without fear and with a manly heart.
Henry Wadsworth Longfellow
Michele’s update, July 6, 2008
There’s a new addition to the Gregory household! His name is Enzo and
he is an Egyptian Mau (kitten). (See photos in Photo Gallery.) Nicole, Randy and
Suzie are having fun with him and Nick and I are anxious to make his
Nicole is doing well and feeling well, and back to where she was before
her run of ill health a few months ago. (Thank you, God.)
Things are gearing up for the 4th Annual Nicole Gregory Charitable Golf Classic
which is being held at Ferncroft Country Club in Danvers, MA, next
Monday, July 14th. There is a contingent of several dozen attending
from Long Island (friends and family) who will be traveling up over the
weekend. If anyone else is interested in attending either the golf
outing or luncheon, please contact Nick or me at (631) 286-1134.
Many thanks to those who have donated raffle prizes for the Chinese
auction held in conjunction with the golf outing. For those who still
wish to donate something, Nick and I will be leaving for Massachusetts
early Friday morning, July 11th, so please get items to us by Thursday.
Thanks a bunch!
Michele’s Update, May 31, 2008
The month of May has not been a good one for the Gregorys. In my last writing, I mentioned Nicole’s trip to the emergency room to be treated for a serious infection. Well, several weeks later she was hospitalized with bilateral pneumonia, which seemingly manifested itself overnight. That, along with other medical complications, necessitated a 5-day hospital stay at Beverly Hospital. Nick and I flew to Boston from NC, and stayed for a week to help out wherever we could.
To make matters worse, Randy had to have the cat put down while Nicole was hospitalized. Lexi had been ailing for over a year. Randy single-handedly kept that cat alive, and she was doing quite well for a long time. But she really started to go downhill of late, and it became apparent there was no longer any hope. It was devastating for both of them, and even sadder because Lexi was the last vestige of their previous life together.
When Nicole was discharged and needed a lot of attention at home, we got to see just how truly amazing her caregivers are (not the least of whom is Randy). For example, even when Jacqui wasn’t on duty, she would quietly slip into the house at 6am, when we were all asleep, give Nicole her antibiotic infusion, and then leave. Then she would return in the early evening and do it again. God bless all of them, especially my son-in-law, and grant them all continued patience and understanding.
Nicole is over the pneumonia, but suffered a major setback with her breathing. Due to the pneumonia, she was required to be on the ventilator 24/7 for several weeks, and now it is taking some time for her to get back to where she was before the pneumonia. Initially, when Nicole was being pessimistic about breathing on her own again, nurse Greg, being the character that he is, told her in no uncertain terms that she was not staying on that vent because he just wasn’t about to deal with that thing! She’s making good progress and she’ll get there, I have no doubt.
Today is their 5th wedding anniversary, but they’ve actually been together 11 years. As I’m sure you will all agree, they’ve dealt with more challenges than anyone should ever have to face, but they are a strong couple and continue to be an inspiration to their friends and family alike.
Just another reminder about the 2008 Nicole Gregory Charitable Golf Classic. It will be held at the Ferncroft Country Club in Middleton, MA, on Monday, July 14, 2008, 7:30am shotgun start. The cost is $185 per golfer and includes a continental breakfast, golf, and BBQ lunch. Price for lunch only is $30. Ferncroft Country Club is conveniently located just off the rotary at the intersection of Rte 1 & I-95, 19 miles north of downtown Boston. From the rotary turn right onto Ferncroft Road (which shortly becomes Village Road) and the Club is on your right. You can also visit www.ferncroftcc.com. (For those traveling from Long Island, there will be more info. to come regarding accommodations in the area.)
Spring has finally arrived, and summer is fast approaching. Enjoy the warmer days and nature’s bountiful blooms. Till next time…
Success is the sum of small efforts, repeated day in and day out. Robert Collier
Michele’s Update, April 29, 2008
We northerners have enjoyed the beginning of a beautiful spring. The flowering trees look especially lovely this year, and we’ve been teased by some warmer weather in the last few weeks. It has made it difficult for Nick and I to head to North Carolina (where we are now) and where the flowering trees and shrubs are already spent.
Nicole has had a particularly difficult month or so. She was hospitalized for a medical procedure in late March and, consequently, she and Randy missed their usual visit to Long Island for Easter, a bummer for all concerned.
We visited the kids in early April, but were only able to spend a few days due to our hectic schedule and theirs. They took us out to a new restaurant and we had a nice evening. The next day, however, Nicole started to feel tired, and by Monday (when we were leaving), she was running a slight fever and had a sinus headache. It was hard to leave with her feeling so lousy, but by the next day, she was better.
Most recently, she suffered severe hyperthermia and other alarming symptoms, as a result (we think) of an undetected bacterial infection and necessitating a trip to the emergency room. It was both a scary and dangerous situation, but (thank the Lord) she came through it. Nick and I were not aware of it until she was home and feeling better, which I guess is a good thing since we’re so far away and couldn’t do much about it anyway.
The body of a person living with a spinal cord injury reacts differently than that of an able-bodied individual. With a spinal cord injury, close attention must be paid to everything. The simplest health issue can become life-threatening. Nick and I worry about her all the time, and being so far away just makes it harder.
There’s another new nurse on staff…Jeanine (who appears to be a very caring individual). Unfortunately, Debbie just gave her notice and will be leaving soon. And so it goes…
Plans for the 4th Annual Nicole Gregory Golf Classic are under way. It will be held at the Ferncroft Country Club in Middleton, MA, on Monday, July 14th. Details are on the “Fundraisers” page of this website.
If you have the time, please read my commentary on the Working2Walk Symposium in DC that I attended earlier this month. I hope you find it to be of interest.
Have a lovely spring!
One of the few guarantees in life is that it will never turn out the way we expect. But, rather than let the events in our lives define who we are, we can make the decision to define the possibilities in our lives.
Some photos from
Working2Walk Symposium Washington, DC April 13-15, 2008
Commentary on Working2Walk Symposium - April 13-15, 2008 Washington, DC
My head is still spinning after a very illuminating and energizing weekend in DC with my niece, Pam. Together, we once again attended the annual Working2Walk Symposium on SCI held this year at the Kellogg Conference Center at Gallaudet University in DC (April 13-15). This was the fourth annual W2W event sponsored by the Unite2Fight Paralysis organization, but rest assured there has been no abatement in the passion and energy brought to this venue each and every time.
It was a comfortable environment and very conducive to learning…and learning we did. After welcoming remarks and introductory talks on advocacy and the purpose of our gathering, the entire congregation of attendees broke into smaller class sessions (which we had prearranged). These sessions were given by noted neuroscientists and other clinicians in the field of SCI and research (specifically, stem cell).
Pam and I registered for most of the same classes, but our schedule was slightly different, although we did get to attend one together. As always, Dr. Wise Young, the world-renowned neuroscientist who has dedicated his career to a cure for SCI, was the most engaging of all speakers. He is not only brilliant (living up to his name), he is overwhelmingly compassionate. He is congenial, and very approachable and, refreshingly, speaks on a level most can easily understand. He spoke of the clinical trials going on in China, and how he spends so much of his time there now, due to the funding difficulties for clinical trials in the US. His frustration is evident as he confides that he did not want to spend the rest of his life in this endeavor. The cure for paralysis should have been within reach by now. But he will keep at it because it is so important to him.
Other speakers of note were Dr. Cristina Sadowsky and Dr. John McDonald, both from the Kennedy Krieger Institute in Baltimore. Dr. Sadowski spoke on health issues facing SCI patients and Dr. McDonald reiterated his standing on activity-based rehabilitation, his specialty. Cycling three times a week for one hour is all that is needed to keep SCI patients healthy. (Nicole exceeds that. RTI keeps records on their patients and Nicole’s activity information is transmitted to them via the bike’s computer system. She is #1 in the nation in her progress on her FES bike.)
The second day of the conference was a mixed bag. We listened to heart-wrenching stories (much like our own). We were treated to demonstrations of the latest in neuroprosthetics and neurosensing equipment (too complicated to go into here). Restorative Therapies demonstrated the RT300 FES bike that Nicole uses faithfully. I was even called upon to give a testimonial on the positive effects FES cycling has had on Nicole, not the least of which is her ability to breathe independently of the ventilator. (This conclusion was confirmed by Nicole’s doctor, Steven Williams of Boston Medical Center.) When I told Dr. McDonald that Nicole had gotten off the vent by day, he was not at all surprised. It seems this type of activity activates the “pattern activity center” in the lower spinal column which in turn stimulates the abdominal and chest area. (And still the insurance company refuses to reimburse for the cost of the bike, based on their opinion that it is “exercise equipment”.)
RTI demonstrated the upper body stim system for the arms, which Nicole is very interested in. She would need to demo the equipment before purchasing it. They want to be sure the upper body electrical stim will not exacerbate some inherent instability and pain she has in her shoulder area.
Along with the educational aspects of the conference, Pam and I took part in a yoga class geared to the wheelchair contingent. I would say there were probably more disabled than able-bodied in the room. To our amazement, every wheelchair-bound individual (and there were probably ten or so) was able to get out of his/her chair and onto a floor mat (some with help and others on their own) and managed to participate in most or all of the exercises.
The symposium offers a chance for those afflicted, their caregivers and the general public, to be educated by the world’s greatest scientists and physicians in the field of SCI. It also empowers those in attendance to advocate on Capitol Hill for the passage of legislation so crucial to qualify of life issues for those suffering from this horrific affliction.
This year, the concentration was on the still-yet-to-happen passage of the Christopher and Dana Reeve Paralysis Act by the Senate. Having been unanimously adopted by the House, the bill is being held up in the Senate by Sen. Coburn from Oklahoma for reasons unknown to the masses. In a nutshell, this is a non-controversial bill which would allow for collaboration among researchers and scientists, eliminating redundancy of efforts, and also calls for increases in NIH funding by the federal government, and other qualify of life issues for those living with paralysis.
Kudos to Unite2Fight Paralysis, the Kennedy Krieger Center, the Reeve Foundation, and all the movers and shakers who make this conference happen. We were bombarded with information. We laughed and we cried. We were well fed and entertained, and given ample time to socialize. The weather was beautiful and the cherry blossoms were shouting their final hurrah.
It may seem strange, but there is a certain feeling of comfort to be amongst those who have dealt with, and are still dealing with, the same issues that you and your loved one are dealing with. I guess you might call it comradeship. You share stories … exchange emails and websites. You see familiar faces from last time. Old acquaintances are rekindled and new ones evolve. The underlying emotion is that we are all in this together, and therein is where we find our strength.
Thanks for caring and taking the time to read my ramblings.
PLEASE SAVE THE DATE!!
4th Annual NICOLE GREGORY CHARITABLE GOLF OUTING to be held on MONDAY, JULY 14, 2008 Ferncroft Country Club, Middleton, MA
MORE INFO. TO COME....
See "Fundraisers" page for info. on Ferncroft CC.
Michele’s Update, January 12, 2008
All our best wishes for a happy and prosperous 2008. We, of course, continue to hope and pray for more progress in Nicole’s recovery, and advancements in the field of stem cell research in the months ahead.
I should fill you in on the past few months, so here goes…
We were in Massachusetts for Halloween, and Nicole and Randy spent Thanksgiving on Long Island with my family. Photos are on the website in the photo gallery.
Nick and I headed to Massachusetts on Christmas Day and spent four days with Nicole, Randy and staff before heading to Maine to visit friends in Bridgton. We dealt with a lot of snow in Maine, but, luckily, the kids didn’t have the same problems in Beverly.
There is a story I must relate, and perhaps it may restore your faith in mankind. It did for me. The third anniversary of Nicole’s “stroke” was on November 7th. She and Randy call it her “Alive Day”, and as you can well understand, it’s a difficult time for them.
That evening, they went out to a local restaurant that serves a special dish she wanted – potato nachos (I know…I never heard of them either). She was very much looking forward to this, but when they ordered, they were told that the dish could not be served in the dining room, only in the bar. The bar area had only high cocktail tables which Nicole is unable to sit at, so they had to remain in the dining room. Randy asked if he could order the dish as a “take out” item, but they denied that request as well. When the kids complained of unfair treatment of the disabled, the excuse was that if they allowed Nicole to have the nachos in the dining room, it would be unfair to the rest of the diners. (Now, I rather doubt that any of the diners would have had a problem with it, given Nicole’s circumstances.)
Needless to say, the kids left, disappointed and annoyed, and went to another restaurant in nearby Hamilton, albeit a pricier one. When it was time to pay the bill, they were told that their dinner was paid for by a couple who wished to remain anonymous, and who had already left the restaurant. The evening ended on a positive note, but as Nicole lamented…she still didn’t get her potato nachos.
Christmas was nice. Randy did the cooking, and everybody brought something. But the accolades must go to my daughter and her nurse, Jacquie, who did all the planning, food shopping, gift purchasing and decorating. They make a great team.
Thankfully, Debbie (one of the nurses) is back on a limited basis, two mornings a week. There is a new photo of Greg, Debbie and Karen in the photo gallery. (Jacquie wouldn’t pose for me.) What a great staff they are! I love them all!
Nicole is still having problems maintaining her body temperature, although the four days we were with her she never dropped below 96.5. She has also been complaining of dizziness and fatigue on and off, which concerns me. She attributes it to dehydration due to the dryness of the air in the home. She has been trying to step up her fluid intake and that seems to help. (Between that and her temperature problems, there's always something to worry about.)
Dissatisfied with the fact that Nicole had no specialist overseeing her case, I made a plea to Dr. Steve Williams, the head of spinal cord rehabilitation at Boston Medical Center, to take her on as a patient. The word was that he was not taking any new patients, but I thought it couldn’t hurt to try, so I did. I wrote him and told him all about her situation and directed him to her website. I informed him that we had spoken at the Working2Walk Rally on Capital Hill in 2006 and he was nice enough to answer some questions for me at that time. Dr. Williams responded back immediately that he would be happy to see Nicole! He was also quite taken with her website. Her first visit was last Wednesday, and she is very happy with him. He spent two hours with her and Randy (Jacquie went too). The kids feel they finally have a doctor who takes a real interest in her. Williams is a "take charge" guy and has a number of specialists he would like her to see. At last they have someone who will coordinate her care. Nicole will see him again in three months.
Nicole continues to spend her days breathing independently of the ventilator. Neither her pulmonologist nor Dr. Williams wish to rush her overnight ventilator weaning for fear of fatiguing her diaphragm. In a few months, however, Dr. Williams would like to hospitalize her overnight so that she can be monitored while she is sleeping and off the vent. I think that’s a much safer scenario than trying to do it at home on her own.
Nicole remains faithful to the FES bike, clocking over 30 miles a week. Restorative Therapies recently informed us that the arm stimulation attachment for the FES bike has at long last received FDA approval. This piece of equipment will do the same for her arms as the bike does for her legs, that is, build up the muscles and keep them toned, as well as having cardiovascular benefits. The cost is $6,000 (that’s where the Trust Fund comes in) and her FES bike would have to be returned to Baltimore to be retrofitted with the mechanism. She is excited, as are we, about this opportunity to exercise her poor neglected arms.
Rick, Nicole’s physical therapist, is also incorporating some new techniques on her – working towards strengthening her torso and neck. It is felt that if the diaphragm can work, then other abdominal muscles may as well, and who knows where that may lead.
Since Bob left and took all his furniture, the kids have had to buy a couch, TV, and have resurrected their old kitchen table (originally my mother’s) for use in the dining room. They’re still in need of a light fixture, a TV stand and some sort of china cabinet, but they’re not in any great rush.
Nick and I have graduated to the guest bedroom on the second floor. We have a new bed and are waiting for the walls to be painted so that Nicole and I can choose a new bedroom ensemble. It’s so nice and convenient to have our own bathroom now when we stay there. And Randy made a nice office for himself in the other upstairs room.
We’ll make another quick trip to Massachusetts just before we leave for NC in early February. I’m hoping the kids decide to visit us down south sometime this winter. It would be a nice break from the miserable New England weather.
Thanks for putting up with my ramblings….
So many of our dreams at first seem impossible, then they seem improbable, and then, when we summon the will, they soon become inevitable.
Michele’s update, October 6, 2007
Nick and I recently returned from Asheville, NC, to our home in Calabash. We accompanied our friends, the Boyles, on their visit to see an elderly aunt. We toured the Biltmore Estate and generally enjoyed the clear mountain air and cool, dry weather.
Nicole and Randy visited Long Island the weekend of September 14-16th, specifically to attend a family gathering in celebration of her Uncle Fred’s 75th birthday. Most of her out-of-town cousins (on my side of the family) were there as well, so it was a nice reunion.
An additional nurse is on board at the Gregory household -– Greg. Yes, a male nurse. He is available on a fill-in basis in the afternoons, and he is a massage therapist as well, which is a big plus. Nicole likes him and reports that his contribution to the household is making cappuccinos for everyone. Nick and I are anxious to meet him.
There was a celebration at Copley Square in Boston last weekend in honor of the Shepherd family from Atlanta, GA. You may recall my references to the Shepherd Center in Atlanta where Nicole spent her final month in rehab. Well, the invitees were former patients and supporters of the Shepherd Center from the New England area, and Nicole and Randy were among those attending. According to the kids, it was a good experience and they had a nice time.
Dr. Bowman (who was Nicole’s physiatrist during her stay there in 2005) was in attendance. I might add that he was the doctor who ran the clinical study on diaphragmatic pacing in Atlanta last December, and who found Nicole not to be a candidate for the procedure. He was also the one, however, who brought to their attention the fact that one side of her diaphragm was working on its own and recommended she return home and seek medical help for weaning from her ventilator (which she did). Dr. Bowman was so pleased to see the vast improvement in Nicole now that she is breathing without the ventilator most of the day. He told her that was the best news he had all week! She made his day!
It actually is quite incredible that she was able to wean herself off the vent. She has come a long way from where she was two years ago in that regard. Her latest arterial blood gas test showed her levels to be perfectly normal, and examination by a new pulmonologist determined that she is getting air into the lower lobes of her lungs, which is great news.
The vent tray has been removed from the wheelchair, which gives her a lot more room to maneuver around, but they do travel with the vent just in case. And she still uses it at night when she sleeps, although the new doctor wants her to try sleeping without it, using an alarm oximator in the event her O2 level drops, or CO2 level rises. I’m sure she is not going to rush into that quite yet.
If I may quote a friend from a recent e-mail, “With each positive step for her we count our blessings and pray for more.” (Well said, Marilou. Thank you.)
Bob Gregory is on his way to his new home in inland NC. He left yesterday, driving his 40 foot motorcoach and towing his Explorer behind. Nicole reports that it was quite a sight! Randy and Nicole will be taking over the house in the hopes of buying it. We will miss seeing Bob, with his quirky ways and easy wit, when we visit Massachusetts. By the same token, Nick and I may soon be able to move from the basement to the second floor bedroom.
If all goes as planned, Nicole may soon be doing some volunteer work in her field (dietetics). It’s too early to say, but, hopefully, there will be more about that in the future.
Nick and I are returning to Long Island on October 16th and will probably be visiting the Gregorys around Halloween again this year. I’m anxious to see what Suzie’s costumes will be like this year!
Until next time…
“We cannot direct the wind, but we can adjust our sails.”(Author Unknown)
For photos of the 3rd Annual Nicole Gregory Charitable Golf Classic, please consult 2007 Golf Outing page.
Nicole's cousin, Joanne, got married on July 8, 2007 on Long Island. These are some photos from the wedding.
Nicole and Randy celebrated their 4th wedding anniversary (May 31st) in Niagara Falls.
Here are some photos of that trip.
Michele’s update – July 11, 2007
Our family just celebrated an awesome occasion….the marriage of my great-niece Joanne Giuliano to a terrific young man, Greg Klever. Nicole and Randy drove down from Massachusetts to attend the wedding, and it was a rare treat to have our entire family together. We wish the Klevers (I call them Ward and June) a lifetime of happiness together. (See above photos.)
The Gregorys’ visit was a short one, but Nick and I will get to see them again next weekend for the 3rd Annual Nicole Gregory Charitable Golf Classic up in Beverly on Monday, July 16th. We have about twenty or so friends and family traveling up from Long Island and Pennsylvania to attend. Randy is still looking for golfers, tee sponsors and raffle prizes. Information about the golf outing is on the website (www.nicolegregory.com) under “2007 Golf Outing” in the menu. Last year the temperature was in the 90’s. This year we’re hoping for a balmier day.
Randy’s dad, Bob, is off on an extended vacation in the south right now, so the kids have the house to themselves, in the evenings anyway. During the days, of course, people are coming and going. On our last trip up (Father’s Day weekend), we had the pleasure of meeting Nicole’s newest nurse, Debbie Johnson. She is another treasure. We all like her a lot. Debbie shares shifts with Jacqui. Then Karen is there some afternoons to take care of the house, to cover when the nurses aren’t there (and for comic relief, as Nicole puts it). It took a lot of effort, but they got themselves a great group of caregivers.
With so much on Randy’s plate these days, he wants Nicole to handle some of the household duties with her caregivers –like having the van serviced, getting the hot water heater fixed, making phone calls, etc., instead of “shopping for clothes and watching The Price Is Right” in their spare time. She and Jacqui love that show! When I called them to see how they were faring when Bob Barker bid his final farewell to his audiences, Jacqui was teary-eyed.
Randy and Nicole spent their 4th wedding anniversary (May 31st) in Niagara Falls. Since they live in the most northeasterly part of Massachusetts, it took them nearly nine hours to travel across Massachusetts and New York to get there. They had a good time. (See above photos.)
The latest on the pets is that Lexi is doing a lot better. A few months back, she had suffered from kidney problems and one of the vets wanted to put her down. The kids were so upset! Nicole wanted a second opinion, so they went to another vet who hospitalized the cat for a few days and pumped her full of fluids and antibiotics. Randy continues to use a syringe to hydrate her daily, and she’s doing fine. Now, they discovered Suzie has Lyme disease (which isn’t too serious for a dog) but she has to take medication twice daily. Nicole says that’s all Randy needed was something else to do! Suzie and Lexi were both here with us this past weekend. (New photos of Lexi on the “Pets” page in the website Photo Gallery.)
Nicole is now able to comfortably spend most of her day off the vent. (Thank the Lord!) She doesn’t even need the vent when she’s biking! She does speak more quietly, however, which sometimes is a problem because she often has to repeat herself.
Her temperature control problem is much better, but it occasionally still drops in the afternoons and rises if she spends too much time in the sun. She’s been very careful about that this year.
Nicole is in need of a new doctor. The last time she went in to Boston Medical Center to visit her physiatrist (fizz-eye-a-trist), she and Karen were 20 minutes late and the doctor refused to see her. Can you even imagine that?! Here is a quadriplegic woman traveling to the city of Boston (a 40 minute ride) where anything can happen (traffic snarls, van problems, medical emergency, parking issues) and the doctor refuses to see her!! Nicole won’t go back to her. She has a local GP, but what she really needs and wants is a pulmonologist to oversee her weaning, etc. You’d think “how difficult can that be?” As I’ve said before, we are extremely disappointed in the medical care she has gotten in the Boston area – the supposed medical Mecca of the country!
Well, this week we're gearing up for the golf outing. If any of you have anything to donate to the raffle, let Randy or me know. Until next time….I wish you all a safe and happy summer.
It does not matter how slowly you go, so long as you do not stop. Confucius
May 2, 2007
After months of
no updates, it’s time to catch up.Nicole and Randy are actually with us here in NC.They flew down on Sunday (an uneventful
flight) and are enjoying our spacious and open home and the sunny, warm
weather.We have a new deck, built
by Nick and a carpenter in the neighborhood.It’s large and lovely and we are all enjoying it very
much.Nick finished it the week
before the kids arrived.
Nicole has been
doing quite well with breathing on her own.She can be off her vent for most of the day now.Recent tests showed she is breathing
fine and her arterial blood gases were normal.She is to keep doing what she’s been doing.She has gotten to the point now where
most of her breathing is involuntary.She still speaks low when she is off the vent, but that’s improving as
well.When I think back to those
who said it would never happen…I
would love for them to see her now. A special thanks to all of you for your continued prayers. God answers them in His own way, in His own time.
Nicole has been seeing an acupuncturist to help with her arm spasms, breathing and temperature problems. She believes the treatments have been helping to calm down the spasms in her right arm, at the very least. I, myself, noticed a difference in the finger movements in her right hand. We discovered that she can now close her hand 1/3 of the way towards making a fist. She said she will bring that to the attention of her therapist, Rick.
It was a long,
dreary winter and Nicole is finally coming out of her funk.Her main problem at this time is her
dropping body temperature in the PM.It’s been an ongoing problem, but it has been better since she’s been in
the warmer climate.Since she’s
been here, she’s only dropped to 95 once in the evening.Not as bad as the last several months,
where it’s dropped to 91/92.Hopefully, when they get back home, there will be no further need for
hats, blankets and heaters.This
problem, not uncommon to those with high cervical injuries, is known as
poikilothermia (meaning “cold-blooded”) and is due to the lack of nerve
impulses getting to the hypothalamus which controls body temperature.She also has to be very careful about
time spent out in the sun now, as well.
We spent a few
afternoons sightseeing and showing them around our local area and Myrtle
Beach, SC.We took them to our
favorite hot dog place in North Myrtle, to Ocean Isle Beach, Sunset Beach, down
the Grand Strand in MB, Broadway at the Beach, etc. We ate at the Boundary House in Calabash and on the outside deck at the Crab Catcher in Little River (where a seagull chose to relieve himself on my daughter's arm!). Mostly, though, Nicole enjoyed our deck and the beautiful weather.And Randy enjoyed golfing with Nick.Of course, we had fun
with Suzie, and Suzie had fun with Molly, the neighbor’s Westie. Jane and Richard Boyle, long-time friends of ours who also live here and who hadn't seen Nicole and Randy since their wedding, finally got to spend some time with them here. And Randy and Nicole got to meet our "southern" neighbors, Kathy and Bill.
The kids have
hired some new nurses.There is
Debbie and Donna (now they’re starting with the “D”s) and another Jen.They’re just being trained now, but it is expected that they will work out fine.They’ve been short-handed for months, and it’s been very stressful for
them.It’s been a long time since
the Gregorys had a full staff.
Annual Nicole Gregory Golf Outing is in the planning stages, the date being
July 16.It’s time to start
finding prospective golfers and accruing raffle prizes.Since we always have a large contingent
attending from Long Island, it would be great to have some prizes specific to
Long Island, like gift certificates to stores or restaurants, etc.The same holds true for those of you
who hail from the North Shore of Massachusetts.We always welcome wine and liquor, and just about any other
items popular at golf outing raffles. If anyone out there can help us with any of the above, we’d be very
appreciative.They will also be
about that later.
we’re off to the airport to see the kids off.It’s been a short, but wonderful visit, and a long time
coming!We wish them Godspeed, and a safe and comfortable flight. We will see them mid-June in Massachusetts.
Have a beautiful
spring!It’s time for reflection
and counting your blessings.We
I am still
determined to be cheerful and happy, in whatever situation I may be; for I have
learned from experience that the greater part of our happiness or misery
depends upon our
dispositions, and not upon our circumstances.
Michele’s Update – February 24, 2007
I hope this update finds all you northerners finding creative ways to keep warm.Nick and I are in North Carolina “basking” in 60 degree weather.Prior to our flying down here, we had a short visit with Nicole and Randy in Massachusetts.
Kathy Finch (the nurse who had been with Nicole for a year and a half) left to make a career change from home care to clinical.We wish her well in her new job, but her leaving has made for some difficulties.For the past month, Nicole has had only one nurse, Jacqui, who is unable to work more than 2 ½ days a week.Her PCA, Karen, fills in some of the gaps, but it has been necessary for Randy to get Nicole ready some mornings himself before he leaves for work.Jenny has rearranged her work schedule as well in order to take Nicole to therapy one day a week.
Home care nurses are hard to come by, and Nicole is particular as to whom she will be spending her days with (who can blame her?).In short, they have very little “backup” and I’m afraid this will continue to be an ongoing problem for them.We try to help out when we can, but it is difficult for us to get up there more than once a month, if that.
A new nurse is supposed to start next week, a few mornings a week.Hopefully, she will be a “good fit” and things will get back to “normal”, at least for awhile.
Nicole has been doing well with her “weaning” exercises.While we were there in January, she was up to 3 ½ hours off the vent, and “capped” (it is harder to breathe when the trache hole is covered).She reports that she is now doing 5 hours off.Her oxygen saturation stats are consistently high, she is comfortable, and she is able to eat, drink and speak while she is breathing on her own.She calls it her “sexy” voice because she speaks slowly and quietly.Her breathing is also unassisted during all her therapy sessions with Rick.(See new photos in Photo Gallery.)She needs to continue to be very conscientious about this as it is the most important thing she can do for herself right now.
Unfortunately, Nicole has encountered some problem keeping her body temperature within the normal range.It has been very cold in northern Massachusetts, and even though she is in a warm house, her temperature drops quite low in the afternoon.It is not unusual for SCI patients to have problems such as these, as the body’s regulatory system ceases to work properly.She dons a warm hat and they pile blankets on her and feed her hot tea, which raises it somewhat, but it is of concern to us.Repeated calls to her physiatrist continue to go unanswered, which I can’t seem to understand at all.
Despite the cold, Randy and Nicole attended a black tie affair in Boston a few weeks ago.It had something to do with Randy’s job with New York Life.Hopefully, I will have photos to put on the website soon.
The kids are planning a visit to North Carolina in late April.We are really looking forward to that because this will be the first time they will see our home.It took a little finagling but we think we have everything in place for them (airline, van, respiratory equipment), so it should go smoothly.We are also having a deck built in time for their visit so that Nicole can enjoy sitting out in the sun and looking out over the golf course.By that time, the weather should be perfect!
That’s all for now.
Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."
Michele’s Update, December 20, 2006
The holidays are upon us. I wish I could conjure up some real
Christmas spirit, but I’m just “going through the motions” once
Nicole’s trip to Atlanta did not go as we had hoped. The physicians
and technicians at The Shepherd Center did not get the test results
they needed to accept her into the current clinical study for
diaphragmatic pacers. After much anticipation and positive feedback
from those at Shepherd (she was found to be in perfect health and the date and time of her surgery had already been scheduled),
a major discrepancy was found between the phrenic nerve tests done
there at Shepherd in Atlanta and those done at Mass General in Boston.
(Too technical to go into here.) The parameters of the clinical
study must be strictly adhered to. Consequently, the team in Atlanta
had to go with their results, which disqualified Nicole from
participating in the study. (Only 1 out of 8 people who were evaluated was accepted into the study.)
It was a big effort to go to Atlanta, so for them to come back
disappointed brings pain to everyone who cares about them. You think:
how many times can they be defeated and bounce back again? But they
are strong, and they will. My motto for many years has been “That
which doesn’t kill us makes us stronger”. I never knew how true that
would turn out to be.
Thanks to the helpfulness of the Delta Airlines staff, at least the
flights to and from Atlanta went without a hitch, as did the cab rides
to and from the motel and hospital. Now they know they can fly
As devastating as this was to her and Randy (and disappointing to all
of us as well), it may turn out to be a blessing in disguise. The way
Nicole describes what the diaphragmatic pacing process entails, I think
she may be having second thoughts about it anyway.
Also…and I think this is most important …the physicians in
Atlanta found that one side of her diaphragm is now working on its own
without electrical stimulation. Though it is far from strong, Nicole
was told that if she works very hard on her breathing exercises, she
could very well build up her diaphragm on her own. She has now been
able to breathe without her vent during her entire PT sessions with
Rick, without any discomfort at all. She will be seeing her
physiatrist at Boston Medical Center in January to (hopefully) set up a
Another setback came by way of the 109th Congress in its defeat of the
Christopher Reeve Paralysis Act in the Senate. The bill had finally
come out of committee for the first time, passed the House, and was
“held” by Senator William Frist, MD (Tennessee) who (it is rumored)
feels that Congress should not “micromanage the National Institute of
Health”. Give me a break! Now we will start over again with the 110th
Congress next year. (Frist's term is up in January.) See what Chaz Southard has to say on the subject: www.chazsouthard.org.
In recapping the last few months, the “Afternoon of Jazz” held on
Sunday, November 19th, was hugely successful, thanks to the generosity
of Bill Schweigler, owner of the Westhampton Steakhouse, who donated
both the food and beverages. The jazz ensemble (who also donated their time and talents)
was a big draw and delightfully entertaining. Tickets were sold out
well before the event, and the place was mobbed. Our apologies to
those who were not able to attend due to space limitations. And our
heartfelt thanks to those who couldn’t attend, but made donations. Joe
Sanci, who handled the event for the South Country Lions Club, is to be
commended for a job well done. Some of the photos are posted on the
website in the Photo Gallery.
Our Thanksgiving with Nicole and Randy here on Long Island was great.
We had a wonderful dinner at my sister’s on Turkey Day. And Nicole got
a chance to see all of her aunts and uncles and some of her cousins who
visited one afternoon, as well as some family friends. That Friday
night we went out to dinner at the Bellport Country Club. It was a
short visit, but most pleasurable.
They traveled by ferry for the first time since Nicole’s incident,
coming over on the Port Jefferson-Bridgeport ferry and returning via
Orient Point-New London. No problem either way. It’s so much easier
for them and we hope now this will inspire them to visit Long Island
Nick and I are spending Christmas Eve with my family and leaving
Christmas morning for Massachusetts. Nicole and Randy are hosting
Christmas dinner at their house again this year for Randy’s family. It
will be nice to spend the holiday with the Gregorys, the Simonsens and
In closing, I wish you all a wonderful Christmas, or whatever holiday
you may be celebrating. May God’s blessings be upon each and every one
of you in this season of joy. Try to take time for yourselves amidst
all the madness, and remember the “reason for the season”.
We’ll keep hope alive in the new year.
"A promise is all about faith. A promise is only as strong as your own faith in your own self, in your own god. So when you swear, in light of your strengths and in spite of your weaknesses, to struggle and follow through, you are doing a beautiful thing.”
Excerpt from the book “I Hope You Dance” by Mark D. Sanders & Tia Sillers
"AFTERNOON OF JAZZ"
We were overwhelmed by the turnout at the "Afternoon of Jazz" held on Sunday, November 19, 2006.
We would like to thank all those who attended, and extend our apologies to those who were unable to attend due to the sell-out of tickets.
Our special thanks go to Bill Schweigler of the Westhampton Steakhouse (who so generously donated the food and bar), Joe Sanci and the South Country Lions Club (for organizing the event), and Bill Rignola and his jazz ensemble for donating their services.
It was an event to remember, and we are truly blessed to have such generous and caring friends and family. God bless you all.
(See photos in Photo Gallery)
Michele’s Update – November 7, 2006
It’s Election Day evening, and I hope all you exemplary citizens have done your civic duty at the polls. Today is also significant to us because it was two years ago today that Nicole was stricken. Some may think “how quickly time flies”, but when you’ve been through all that they’ve been through, it’s been a long and difficult two years.
Nick and I have just returned from Massachusetts and I am pleased to report that all is going well with the “kids”. Randy has a new job and is loving it, and Nicole is strong and healthy, thank God. She has a new therapist (Rick) and is loving that as well. See the new therapy photos in her website Photo Gallery (www.nicolegregory.com).
I must say, Randy and Nicole have done a great job of assembling and managing an outstanding group of caregivers, which is no easy task. I call them the “J’s and K’s”. They are: Jacqui, Jeannie, Jenny and Jill, (her former OT Joanne is no longer with her) and Kathy, Karen and Kate. Some are nurses, some are PCAs and some are therapists. Then there are a few “M’s”: Maria and Michele (me), and the ever important “R’s”: Randy (of course) and Rick (her new PT). It’s silly, I know, but I think it’s kind of funny.
The J’s and K’s each have their specialties. Kathy is her nurse 2 1/2 days a week. She’s been with them the longest (1 1/2 years). Along with Nicole’s personal care, Kathy deals with the equipment suppliers and doctors, and makes most of her appointments. She’s also the hair and nail expert .
Jacqui (who has just returned from maternity leave) is a nurse who works a few days a week. She’s been on board for about a year. Her duties are similar to Kathy’s but she is the “shopping maven”. She also takes Nicole to therapy and she and Nicole have a great time together. Since she lives locally, she’s on hand to help out in the evenings if Randy has a late night. Nicole missed her terribly when she was on maternity leave for six weeks. (Baby Annie arrived in September and is #4 for Jacqui and her husband.)
Karen (2 months) is a PCA, and along with her duties with regard to Nicole’s care, she does most of the laundry and house cleaning. She is a treasure. (Now I don’t have as much housework to do when I visit!) She also takes her to therapy, etc. Jeannie is a new nurse, who works a few mornings a week. Jill is a therapist, as is Maria, and Kate is a PT intern/PCA.
And last, but not least, there’s Jenny, Nicole’s best friend, who can handle (almost) everything (there’s a line that cannot be crossed!). They all pitch in and do whatever there is that needs to be done. And they all genuinely care for Nicole. Thank God for all of them!
And what would they do without Suzie?! That little cutie keeps everybody smiling. She’s such a character. You must log on to the website and view the photos of her in her various Halloween costumes. (The pets have their own section in the Photo Gallery.) I have never seen an animal attract so much attention. Wherever we go with Nicole, Suzie comes along and people are quick to approach and admire her.
Nick and I stayed in Salem for an overnight (my birthday gift from the kids) and they met us for dinner at a lovely restaurant, The Lyceum. Now when Nicole goes out socially, she uses her manual wheelchair, because it is smaller and lower than the power chair and she can sit at a table more comfortably. The vent is also less conspicuous. And with her head and neck stronger, she doesn’t require the head support as before. Like Nicole says, she looks “more normal”in it.
Nicole’s friend, Debbie, got married a few weekends ago in Manhattan. Nicole, Randy and Jenny drove to Manhattan for the wedding and returned the same night (well, early the next morning). Nick and I were concerned about the long drive, but they did it and had a wonderful time! They wished they could have stayed longer, but the next day was a workday for Randy. I hear the wedding was a grand affair, and our very best wishes go out to Debbie and Chetan for a long and happy marriage!
And while I’m on the subject of happy events, congratulations to Kelly and Dean Diamond on the arrival of their new baby, Nicholas!
Randy and Nicole attended a Spinal Cord Injury Seminar in Boston a few weeks ago. Most of it revolved around stem cell research, but rehabilitation was discussed as well. Nicole left with the knowledge that she was “doing everything right” as far as her therapy is concerned.
There is, at last, a bright spot on the horizon. Nicole and Randy learned of a clinical study involving the laparoscopic placement of diaphragmatic pacers in the diaphragm of vent-dependent SCI patients to assist in vent weaning. The clinical study is out of the Shepherd Center in Atlanta and is being overseen by the physiatrist she had when she was there last year, Dr. Brock Bowman. Nicole was told she was an excellent candidate and is awaiting word on when she will fly down to Atlanta for a screening (probably mid-December). If all goes well, she would return to Atlanta in January for the surgery, and thereafter for periodic follow-up visits. The success rate for this procedure has been excellent so far.
The surgery will be done in Atlanta by Dr. Raymond Onders of the Cleveland Clinic, with whom my niece, Pam, had been corresponding earlier about Nicole this year. He has been doing this surgery experimentally for years, Christopher Reeve having been the first recipient of the diaphragm pacers. (It is a little known fact that he could actually be off his vent for 8-9 hours a day after having this surgery.)
It is what Nicole and Randy had been looking toward in the future. Since it was experimental, the cost for the surgery was upwards of $50,000. However, if she is involved in the clinical trial, the surgery is FREE! They do have to bear the cost of transportation back and forth, but she can fly commercially now.
For those of you who are so inclined, please note that the Prayer to Padre Pio is back on the website again. Please continue to keep Nicole and Randy in your prayers. We need all the help we can get to get things turned around for our girl.
Incidentally, tickets for the “Afternoon of Jazz” in Westhampton are selling out quickly. It’s being held on Sunday, November 19th at the Westhampton Steak House. We’re looking forward to it and hope to see many of you there. Special thanks go to: Joe Sanci of the South Country Lions Club for coordinating the event, Bill Schweigler of the Westhampton Steak House for the food and drinks, Bill Rignola and his band for the music, and Ken Searles for the posters and tickets. (Details for this event are on the website. )
Nicole and Randy will be coming to Long Island for Thanksgiving! We’re excited about it as they haven’t been here since Easter. Give a call if you want to stop by and say “hi”.
Lastly, I share below the prayer I said at the Thanksgiving table last year. I believe it to be appropriate for any and all of us. May you all have a Happy and Blessed Thanksgiving!
God, we thank you for bringing our children home safely to us
and for allowing us all to be together this year.
Thank you for the many blessings in our lives,and
for the strength to bear the heartaches and the disappointments.
Most of all, God bless our family whose love, support and
generosity has gotten us through some difficult times,and
may we continue to be there for each other
to share the good times and bad.
Lastly, we thank you for this feast
and for those who so lovingly prepared it.
Michele’s update, September 8, 2006
Summer has flown by, and some of us on Long Island are still cleaning up from the vestiges of tropical storm Ernesto, who stopped by last week just to make life interesting. Fortunately, our house in North Carolina (which sits just 20 miles from where Ernesto made landfall) suffered no ill effects other than a messy yard.
Since my last update, Nick and I have visited Massachusetts twice. We went up first in mid-July for Nicole’s birthday celebration and the golf outing fundraiser,
Randy had started to plan her 30th birthday party as a surprise, but had to let the cat out of the bag because he really couldn’t keep something like that from her. She ended up doing some of the planning herself and the nurses took her shopping for food and supplies, etc. Nick and I went up a few days early to help out. The yard and deck looked beautiful, dressed up with plants, flowers and yard accessories the kids picked up in their travels.
Over 70 people came and went during the afternoon of the party. Many of Nicole’s relatives from Long Island went up for the party and golf outing, as did a number of our friends. The rest were Randy’s family, Nicole’s therapists, and lots of their friends. Two of Randy’s buddies (one of whom is a chef in Boston) did the barbecuing, and the rest of the food was prepared by family members. The day was brutally hot, but everything went well and it was good to see everyone together again. Nicole, who can be somewhat overwhelmed in a crowd, got through it fine, even with the horrific heat.
The golf outing was the following day, so you can imagine how busy we all were that weekend! Another hot and humid day, but we all had fun. Nicole didn’t seem to mind the heat as much as the rest of us! Lunch was served outside under a tent and the raffle was set up in the shade. All in all, it was a great success, and we would like to thank all those who helped out that day with the raffle, the registration of golfers, photography, etc. (Eileen, Kelly, Lynn, Lisa, Judy, Kate, Pam, Suzy, to name a few.) Our thanks, as well, to those who trekked up there from Long Island and Connecticut, as well as New York City and South Carolina. Nicole even got to see family friends from Arizona! Thanks also to all those who donated raffle prizes and cash contributions. We are so appreciative of your support.
Two weeks later, Nicole had a 30th birthday party for Randy, (with a lot of help from Jenny). They had some friends over and had a wonderful time! The backyard is great for entertaining. They even used the fire pit that night, which kept the mosquitoes away.
We went back to see the kids in early August, combining it with a graduation party we all attended in Groton, MA, for Nicole’s cousin, Caitlin. Because (nurse) Kathy was on vacation, and Randy was away for a few days, Nick and I became very proficient at transporting Nicole to and from therapy and other activities. Once you “conquer the van”, it’s easy, and Nicole pretty much gets herself in and out of it, with a little guidance.
Nicole and Randy finally got a new bed that they can both sleep in. (Poor Randy has been sleeping on a cot for almost two years and his back had just about had it!) They now have a king-size Tempur-Pedic bed (which is actually two beds that can be separated easily in order for the caregivers to get to Nicole). Nicole still uses her special mattress but Randy uses the one that comes with the bed, of course. They are very happy with it indeed. After having changed some furnishings around, there appears to be more room in their bedroom now.
Nicole’s nurse, Jacqui, just went on maternity leave, and Nicole misses her already. I told her it’s not forever, just a few months. It’s been difficult getting a replacement, but they are in the process of training someone new who will start this coming week with Randy supervising. So, Nicole has to get used to someone new…again. She seems to take it in stride. She’s amazing! [There is always a need for backup nursing and/or home health aides. If anybody knows of anyone in their area looking for part time homecare work, please let Randy know.]
Nicole is also bummed over the fact that one of her favorite therapists is no longer available to work with her at home. (A big loss.) She does, however, have a few others who come by during the week. And she is enjoying her outpatient therapy at Elite, (although she is not happy that Suzie has been banned from the premises because other patients began asking to bring in their pets too).
Nicole had developed an allergic reaction to the stim pads used with her FES bike and had to stay off the bike for almost a month, which bothered her a lot. (She loves that bike!) It eventually cleared up with medication, and she’s pedaling away again!
Restorative Therapy Inc., the manufacturers of the FES bike, have been tracking Nicole’s progress via the bike’s computer. They feel she is progressing extremely well; her “power” level is 9. (To give an idea of the relevance of that number, the level of an athletic person in top physical condition is somewhere around 20.) She’s gotten to the point where her heart rate reaches 120, so she is now getting a cardiovascular workout from it. RTI is working out a more vigorous program for her, which is right up her alley. (This is a woman who was at the gym 4 times a week two years ago.)
On another positive note, Nicole reports that she is able to go without her headrest up to 3 or 4 hours a day now, which demonstrates how her neck muscles are continuing to strengthen. And, in accordance with her doctor’s recommendation, she is doing “diaphragm strengthening” exercises. She is able to be off the vent for one-hour intervals several times a day, while still maintaining a high oxygen level.
Spasticity of the extremities is one of the biggest concerns facing SCI patients. Nicole’s problem area has always been her right arm. One of her doctors recently treated her with Botox injections to relax the arm muscles. After a few weeks, it appears to be working. She claims her hand is much more relaxed and, thankfully, she is in less pain.
Randy finally got Nicole to go to the movies. They go in the afternoon, to avoid the crowd. I’m glad, because that’s something to do when the weather gets gloomy and the days get shorter.
Now, if she would only get on that computer and respond to all the e-mails she has gotten! She has good intentions, but then….something always seems to get in the way. So, all of you out there who have been sending messages and not receiving responses, please keep writing, because eventually you will get an answer. [Right, Nicole?]
Nicole and Randy were scheduled to come to Long Island this weekend to help celebrate my birthday, but the van broke down yesterday and won’t be repaired until next week. Luckily, Nicole was not in it at the time. Better this happened near home than while they were enroute to Long Island. Can you imagine what that would have been like? They’re hoping to make the trip next weekend instead.
On a different note, I have taken over the website from my nephew, Michael, so please bear with me. The photos of the golf outing and birthday party will be posted as soon as I can get my act together.
MY OATH TO YOU...
When you are sad....I will dry your tears.
When you are scared.....I will comfort your fears.
When you are worried.....I will give you hope.
When you are confused....I will help you cope.
And when you are lost....And can't see the light,
I shall be your beacon.....Shining ever so bright.
This is my oath.....I pledge till the end.
Why you may ask?.....Because you're my friend.
Women With a Mission!
Michele's update, June 30, 2006
Nick and I recently returned from a visit with the New Englanders. Randy had gone away for a few days (a much-needed break) and we were there to help out, along with Jenny. Jacqui (her nurse) came by both nights to get Nicole ready for bed and Jenny stayed overnight with Nicole. Jenny used her phone alarm, as Randy does, to wake up and turn Nicole (she’s got a great mattress and only needs to be turned once through the night) and things went very smoothly. Then the nurses were back both mornings to get her up. No surprises or mishaps. Randy called periodically to check in, but everything was fine. Let me tell you, Jenny is one amazing friend and I don’t know what Nicole or Randy would do without her!
Randy’s been putting in a lot of time at work as well as preparing for the upcoming golf outing. Coordinating the home care is always a challenge as well. As always, he’s got a lot on his plate. So, we’re always glad to be there to help out where needed when we can.
Nick and I attended outpatient therapy with Nicole and Kathy. Suzie goes too, of course. She’s such a cutie and everybody loves her. (I wore my Yankees shirt, knowing I would be subjecting myself to jeers and comments. I love it!). Nicole was reluctant to start outpatient therapy, but she’s fine with it now.
And while I’m on the subject of therapy, Nicole and Randy were interviewed at Elite Therapy by The Salem News. She made the front page of the paper again in early June. It was a good article, although Nicole wasn’t too happy with the photos taken of her in rehab (there’s one of Suzie, too, of course). One day, while they were shopping, someone actually recognized Nicole and her nurse, Jacqui, from the photos in the newspaper. (I will attempt to get the text of that article on the News Media’s page of the website.)
Last month Nicole had a diaphragm fluoroscopy performed at Brigham & Women’s Hospital. Though we were all hopeful that there would be some evidence of activity, there was not. The kids were both devastated, as we all were, but Nicole has not let it get her down. Her doctor feels that with the positive results of her recent phrenic nerve test, the diaphragm is sufficiently enervated. It is atrophied, however, and needs to be strengthened. That is not an easy thing to do. Nicole was instructed to spend as much time as she can off the vent and to use whatever she has to breathe. She’s been reluctant to do this as she gets anxious, but she knows this is the only way she can help herself, so it’s completely in her hands.
If all else fails, there is a procedure in Cleveland performed by Dr. Raymond Onders, whereby he implants electrodes in the diaphragm transcutaneously to initiate breathing. It’s called pacing. My niece, Pam, has been corresponding with Dr. Onders about Nicole and we hope to get her to Cleveland at some point for an evaluation. Her doctor and therapists, however, do not want her to rush into anything like that yet.
Nicole has been getting around a lot more. She and Randy spent a lovely day in Ogunquit, Maine, for their 3rd anniversary on May 31st. She’s been shopping for curtains, and other items for the house. Her nurses are very adept at getting her in and out of the van, as is Jenny. Jenny and Nicole go off on their jaunts and have fun together, reminiscent of the old days.
The storekeepers are getting to know her and Suzie. Nicole likes it when Suzie rides with her because the dog diverts attention away from her. We were with Nicole and Randy shopping for deck furniture, in and out of several stores, and it’s true. Adults and children alike will go up and remark about the cute little dog. It makes everyone feel at ease and it’s a lot less stressful for Nicole when she's out in public.
Randy has been trying to get the backyard all spruced up for summer entertaining, and last weekend he had a lot of help from Nicole’s cousins, Audrey and Bill Woodbury from Groton, MA, and their children. According to Nicole, it looks like Extreme Makeover had been there! They are so very grateful for the help. Bless our niece and her family. They’ve been there for her and Randy from Day One.
Bob Gregory is doing better with his foot injury, but is still on crutches. He can’t do the stairs in the house, so he’s been staying in his brand new motor home for the last few months. It’s not really a hardship for him though it’s so luxurious.
We’re all looking forward to the upcoming Nicole Gregory Charitable Golf Outing on July 17th. Most of Nicole’s aunts and uncles from L.I. and a lot of her cousins will be going up for the weekend. Some of the folks are putting together raffle prizes, too. And we’re so happy that a lot of Nick’s golfing buddies from Long Island will be playing in the outing. A few wives are coming as well, which is nice. They’ve all been so generous and supportive to us and we feel blessed to have wonderful people like these in our lives.
Randy is hosting a barbecue at their home on Sunday for those who are traveling from out of town, and whoever else wants to attend. There’s a lot to be done, so Nick and I are going up the Thursday before.
Nicole’s and Randy’s 30th birthdays are fast approaching, Nicole on July 25th and Randy on August 5th (yes, she’s older). When I think back to my 30th birthday (30 years ago!), I was recovering from hernia surgery and anxiously awaiting word from the adoption agency that there was a child for us. Three months later, we were blessed with Nicole. She’s still our greatest blessing.
Have a great summer!
Michele and a just a "few" Cranes
All prior updates are posted in the following section.
Thank you for your support.
Women With a Mission!
Michele’s update – May 4, 2006
I have just returned from Washington, DC, where I took part in the “Working 2 Walk” Symposium and the Rally on Capitol Hill for the passage of the Christopher Reeve Paralysis Act and other legislative initiatives to further research in the field of spinal cord injury. The event was sponsored by the Christopher Reeve Foundation and Unite 2 Fight Paralysis.
I was accompanied by my niece, Pam, who resides in the DC area. Pam has been a physical therapist for 27 years, is an activist and knows her way around the health care community and Capitol Hill. Pam not only encouraged my participation in this event, but also opened up her home to me (and fed me wonderful meals as well). Tiring though it was, I gathered up the energy and participated enthusiastically. And I am so glad I did!
I arrived in DC on Saturday afternoon, April 29, by Amtrak. Pam met me at Union Station and we spent the rest of the day relaxing and mentally preparing for the events of the ensuing days.
Sunday morning it was off to the Ronald Reagan International Trade Center for some educational lectures regarding “Science, Funding and the Cure”. The morning session consisted of “Improving Therapies and the State of Rehabilitative Research”, with such noted physicians as Dr. Steven Williams of Boston Medical Center and Dr. John MacDonald, Director of the International Center of Spinal Cord Injury, Kennedy Krieger Institute, in Baltimore, to name a few. (Dr. MacDonald was Christopher Reeve’s neurologist.) After an elegant lunch supplied by the organizers, the afternoon session consisted of advocate testimonials by various survivors of spinal cord injury and family members. Later in the afternoon, the discussions revolved around clinical trials, and we were fortunate to have among the speakers the eminent neuroscientist, Dr. Wise Young, Director of the Keck Center at Rutgers University. We left after 5 pm – a very full day. With a few exceptions, the lectures were quite interesting and eye-opening.
I was happy that I got to speak directly with both Dr. John MacDonald and Dr. Wise Young (who both remembered Nicole from meeting her and Randy last year at a similar symposium in Boston), and also Dr. Steven Williams of Boston Medical Center.
Monday morning, May 1st, it was back to the Reagan Center for advice on how to become an effective advocate both on Capitol Hill and at home. They supplied us with a boxed lunch and then we set out for Baltimore to the open house at the Kennedy Krieger Institute, next to Johns Hopkins.
We arrived there at 3 pm. Dr. John MacDonald, Director of the facility, welcomed us and gave us an overview of the philosophy at Kennedy Krieger and the importance of activity based restorative therapy. (What a wonderful man, and very easy on the eyes!) During the tour, there were demonstrations of the therapy equipment (among them the FES bike Nicole uses) and discussions of its benefits.
In the laboratories, we met with scientists who are on the cutting edge of stem cell research. Pam was particularly good at this because with her background, she was able to speak with them on their level. She has every intention of staying in touch with them. A physiatrist covered the medical issues facing SCI patients and offered advice regarding diaphragmatic pacers for the vent-dependent.
I might add that there was an elaborate display of hors d’oeuvres for us so that we could have eaten all afternoon. We left Kennedy Krieger after 7 pm. Pam (being Pam) gave rides to three people, two of whom came down from the Boston area and were there on behalf of their children. All five of us crowded into her tiny Prius, and she and I didn’t arrive home till after 10 pm!
The next day (Tuesday, May 2nd) we dressed in our rally attire and good walking shoes and set off for Capitol Hill. It was a glorious day! We were all of the belief that Chris and Dana Reeve were shining down on us.
Pam had contacted Sen. Hillary Clinton’s office in my behalf and a photo opportunity was to be set up with the Senator and me. I was quite excited when her press secretary arrived at the rally with two photographers. I felt like an important person awaiting the Senator’s arrival with her staff. I shook Sen. Clinton’s hand and thanked her for all her support for the cause. She asked about Nicole and then posed for a photo with me. [Later that evening, my sister (Pam’s Mom) called to say she had seen me with Hillary on Entertainment Tonight. I had made national TV!]
I also got a chance to meet and chat with Brooke Ellison (one of the speakers at the rally) and her mom, Jean. Some of you may know that Brooke (also a Long Islander) was hit by a car as a child and was left a vent-dependent high quadriplegic, paralyzed from the chin down. She graduated from Harvard, as well as having gotten her Master’s Degree there. (Brooke attended Harvard with her amazing mother, her primary caregiver.) She is now working towards her Ph.D. at Stony Brook University and is a candidate for New York State Senate. Christopher Reeve, impressed with her accomplishments, made a movie of her life “The Brooke Ellison Story” which debuted on TV in October 2004, soon after he died. [I happened to catch the movie on TV two weeks before Nicole got sick.] Her mother, Jean, and I agreed to chat at some point when we are both on Long Island.
Susan Sarandon was the emcee at the rally, taking Dana Reeve’s place. (She is much tinier than I envisioned.) Sen. Kerry from Massachusetts spoke on behalf of the CRPA as did Sen. Harkin from Iowa and, of course, Sen. Clinton, among others.
There was a performance by the popular SCI rap artist “ProfessirX” who dedicated his songs and videos to Chris and Dana Reeve. He performed three times during the course of the weekend.
After the rally, those who had legislative appointments were given lunch vouchers for the cafeteria in the House building, so we headed there on foot (a long walk) and lunched before going off to our respective legislators to advocate for our cause. Pam helped a few disabled people to get to their legislators’ offices. It is difficult enough for the able-bodied to get around, but for the many wheelchair bound, it is almost impossible.
Pam had an appointment with her Congressman and Senator. I did not, but I dropped off some literature at Congressman Tim Bishop’s office and Sen. Schumer’s office and vowed to follow up with them upon my return home.
I must say this was an incredible learning experience for me. Now I can discuss oligodendrocytes and astrocytes, and the differences between embryonic stem cells and Schwann cells. Fascinating! Pam and I met a lot of people, took a lot of pictures, heard a lot of stories, and made Nicole’s story known to many. We both enjoy networking.
Although we have some support on Capitol Hill, we need a lot more of our legislators to sign on as co-sponsors of the Christopher Reeve Paralysis Act to get it out of committee and voted on. The CRPA does not call for stem cell research, and, therefore, is not controversial. The more controversial Stem Cell Research Enhancement Act has passed the House and will be voted on by the Senate this month. I have learned that stem cells will not be the entire answer in curing paralysis but they are the most important research tools in the quest for answers. We are also calling for Congress to increase the budget allocation to the National Institute of Health back to where it was in 2004. No more, no less. For more information on these three initiatives and the Reeve Foundation, please check out www.chrisanddanareeve.com.
At the very least, we must get the CRPA passed. And we could use all of your help. All you need to do is write a strong message to your local Congressman and your State Senators. Sen. Hillary Clinton (NY) is on board already as is Sen. John Kerry and Sen. Ted Kennedy (MA). New Yorkers, please write to Sen. Charles Schumer and the representative in your Congressional District for their assistance in the passage of this important piece of legislation. Those of you in states other than New York and Massachusetts, please find out who your legislators are and enlist their aid on behalf of Nicole and all SCI survivors. Sign on to www.congress.org for help in contacting your legislators.
I thought I already knew a lot about SCI, but I returned home knowing a lot more than I did before. But, there are still so many unanswered questions, not the least of which (for me) is “How does Nicole’s particular situation differ from SCI?”, and “How does a stroke caused by a blood clot differ from a fibrocartilaginous disk emboli, as in Nicole’s case?” We met a man from Pennsylvania who suffered a spinal cord stroke fourteen years ago but his presentation of symptoms differ greatly from Nicole’s. Back then they could not tell him what caused his stroke – only that they believed it was a stroke. We know a teenager from Massachusetts who has suffered from paralysis and vent-dependency for several years and has yet to be diagnosed. Money is desperately needed for collaborative research as well as improving quality of life. We need for Congress to pass the Christopher Reeve Paralysis Act.
Thanks for listening…and for your anticipated assistance.
PS: Keep checking the Photo Gallery for upcoming photos of the weekend’s events.
Michele's update - March 29, 2006
I realize this update has been a long time coming, and I apologize to those of you who keep checking the website for news. Nick and I had been away from early February to mid-March (North Carolina and Florida) and since we were heading to Massachusetts a few weeks ago, I decided to wait until I got back from there to bring you all up to date on things.
As usual, there were a lot of comings and goings in the Gregory household while we were there. Along with Kathy, there's another nurse, Jacqui. We got to spend some time with Jacqui this time and understand why Nicole and Randy think so highly of her. Both Kathy and Jacqui are kind and caring and express a genuine fondness for Nicole, not to mention being highly qualified nurses.
Also on “staff” is Kate, a PT student at Simmons College (where Nicole got her Master's Degree). Kate comes a few days a week to work with Nicole on some PT/OT. Then there's Paula, a PCA (personal care asst.) who also comes a few days a week for a few hours, as well as Maria, her massage therapist, who comes on Fridays. In between, there’s the respiratory tech, the “wheelchair guy”, and the list goes on…
Nicole’s treasured therapists (Joanne and Diane) are still with her for now, but soon Nicole will be starting outpatient therapy. Nicole is not at all happy to be losing Joanne and Diane, but it will be good for her to get out and meet other people. Besides, Joanne will be coming by periodically to check on her progress.
They’re currently shopping for outpatient clinics. We went with them to check out one place, and they still have to visit some others before making a decision. The nurses will be taking her for outpatient therapy three times a week. Kathy is quite good at maneuvering Nicole in and out of the van. She drove us around the other day to the clinic, Nicole’s doctor’s appointment, and then to Starbucks (which is how she and Nicole always end their outings).
We had some good news a few weeks ago. Nicole had a retesting of her phrenic nerve (the nerve that signals the diaphragm to work) at Brigham and Women’s Hospital and there was a marked improvement from last year. It’s a very positive sign, according to her physiatrist, but we really don’t know exactly what the results mean yet in terms of Nicole’s breathing. She has to undergo more testing, which should be soon, so please continue to keep her in your prayers.
Our well wishes go out to Bob Gregory (Randy’s Dad) who is in the hospital with complications from diabetes resulting from a severe burn to the bottom of his foot. Get better real soon, Bob, so you can enjoy your new RV!
Randy’s been busy with work…networking, making new contacts. He’s got a lot on his plate, and now with his Dad in the hospital…well, it’s not easy. They rely so much on her caregivers to be there when they need them, and they don’t have a lot of “backup”. There’s Nick and I, when we’re there, but that’s not often. They are blessed to have Jenny who makes herself available in a pinch. It pains us to be so far away from our daughter when her needs are so great. She’s on our minds day and night, as only a parent can imagine, and we carry the heaviness in our hearts always.
I would like to pass along a website to visit for those who may be so inclined. www.chazsouthard.org This website belongs to a young man from Massachusetts who is an acquaintance of Nicole’s and Randy’s. He was injured a number of years ago and is also a quadriplegic (lower-level, not vent-dependent). Chaz is a shy, passionate and introspective young 26-year old man with an amazing writing ability he was virtually unaware of until after his injury. He has an extraordinary talent both in writing and art, and I think you would find his musings to be quite thought provoking. His biography “Footprints in the Sand” is a particularly poignant chronicle of his life before and after SCI (spinal cord injury).
Plans are underway for the 2nd Annual Nicole Gregory Golf Outing. It will be held at the Beverly Golf and Tennis Country Club on Monday, July 17th, 2006, so all you golfers out there mark your calendars. They are also looking for tee sponsors, raffle prizes, etc. More details to follow.
The North Shore of Massachusetts is a beautiful place to visit in the summer, so those of you who may be traveling a distance to the golf outing might consider making a mini-vacation of it and take the wife along. Non-golfers are welcome to attend the dinner. Nicole will be attending the event this year.
The crocuses are in full bloom in the Gregory yard. With the onset of spring, Nicole is anxious to get outside and enjoy the deck in the warmer weather. Hopefully, we will soon see the last of winter.
The kids are planning to come to Long Island for Easter, and the family is quite excited about that. The Virginia and Connecticut cousins will be joining us, which always means a fun time. For those of you who might like to stop by and visit, please feel free to contact us at 631-286-1134 or e-mail me at Moonriver9@aol.com.
I wish all of you a happy spring…whenever it does finally arrive…and a blessed Easter and Passover.
Michele’s update – January 1, 2006
The holidays are behind us and we can all heave a big sigh of relief. As much as we all enjoy the good food, traditional music, the gathering of family and friends, and the entire spectacle of Christmas, it is a stressful time of year, and I, for one, am glad it’s over.
Let me take this opportunity to rehash the past few months…
Nicole and Randy (along with Jenny and Suzy, the dog) spent Thanksgiving here on Long Island with us. With the help of a wider door, several ramps and a special mattress, accommodating Nicole’s needs was surprisingly easy. We had Thanksgiving dinner at my sister’s (Nicole’s Aunt Laurie), undoubtedly the best cook in the family. The day was spent with all of my family (the exception being my great-niece, Joanne, who had recently moved to California and was unable to join us).
The rest of their visit was taken up with lots of visitors, mostly family, some of whom Nicole hadn’t seen since before she took ill. We had a real nice visit with Laile Fairbairn Blaskey, Nicole’s old chum from high school. It was really wonderful having the kids here. Everyone was pleasantly surprised at how terrific Nicole looked. It was a great visit and, hopefully, they will make periodic trips to Long Island, weather permitting. It was a Thanksgiving to be thankful for.
Shortly thereafter, Nick and I left for our home in North Carolina. We spent two weeks doing holidays things down there, and returned to Long Island the week before Christmas to prepare for the holidays up here.
My entire family gets together for Christmas Eve and this year it was at our house. Then, early Christmas morning, we took off for Massachusetts to spend Christmas Day with the kids and Randy’s family. They had 11 people for dinner (and 15 for dessert), and I have to say that Nicole and Randy did a great job planning and preparing a lovely Christmas dinner with all the trimmings. They broke out the wedding china and crystal making a lovely table. Randy did the honors of saying grace before dinner and had every woman at the table reaching for her handkerchief. Everybody helped out and we all had a very enjoyable day. Nicole isn’t anywhere near where she wants to be right now, but she is certainly a long way from where she was last year at this time.
The house has seen a lot of changes since our last visit. The dining room and living room have been switched around to allow more space, and some new furnishings have added a lovely, warm touch to the rooms. And, oh yes, I almost forgot…. the huge TV that Bob just bought that drives Nicole batty. (Men and their toys!!)
Nicole is very sensitive to the cold and has a portable heater wherever she is. The winter doldrums have set in. We all go through the “blahs” as it becomes more and more of a chore to go out in the cold of winter. So you can well imagine how Nicole must feel. But she still wears a smile on her face and claims all is okay. God bless her.
Randy is trying to put more time into his job, but the difficulty in getting capable nursing care in the mornings is still a problem. Her nurse, Kathy, is there three times a week, but Randy is still her primary caregiver the other four days. There is a new member of the staff on board…. Nicole’s new PCA (personal care assistant), Paula. Nicole likes her a lot and enjoys spending time with her.
I, myself, enjoy watching Nicole’s therapy sessions when we’re there. This time I even helped out a little. The girls are so great -– they're always trying new things. And they have fun, too. They are bound and determined to get her body going. (They wouldn’t let me take pictures this time. We have a camera-shy PT.)
On the medical front, Nicole’s initial test results from a year ago are being sent out for other opinions, and we’ll see where that goes. In the meantime, there still isn’t any one physician overseeing her case. It’s so difficult to find capable doctors, even in Boston! In the meantime, she has some tests that still need to be done and that should be taken care of this month.
If you follow Nicole’s website postings at all, you may remember a recent one from the wife of a C5-6 quad about a handicap accessible condo for sale in Peabody. (She was made aware of Nicole by one of Nicole’s former PTs at Spaulding). Well, I made contact with her, and Nick and I visited her and her husband who just happen to be the couple that were married on the Regis and Kelly Show last February!!! Louise and Rob (who plan on moving to Gloucester) hope to get together with Randy and Nicole soon to share experiences, etc. Small world!
As we embark headlong into 2006, our family’s hope, of course, is that Nicole make great strides in her recovery…vent weaning being at the top of the list. We wish faith, courage, and continued strength for both her and Randy to be able to deal with all that they must deal with day to day. And to you and yours, our dear friends and family, I pass along something that was printed in my church’s weekly bulletin. I think you’ll find it quite fitting. To my beloved daughter and my son-in-law, this one’s for you!
Special Ingredients for the New Year
Enough happiness to keep you sweet.
Enough trials to keep you strong;
Enough sorrows to keep you human,
Enough hope to keep you happy;
Enough failure to keep you humble,
Enough success to keep you eager;
Enough friends to give you comfort,
Enough wealth to meet your needs;
Enough enthusiasm to look forward,
Enough faith to banish depression;
Enough determination to make each day
a better day than yesterday.
The best to you all in 2006!
Michele’s update – November 18, 2005
Nick and I just got back from visiting the kids in Massachusetts. We went up on Friday to attend Nicole’s fundraiser at Danversport Yacht Club that evening. It was a great event! Upon entering the ballroom, one could not help but be impressed by its enormity and décor. There were more than 230 guests in attendance: family, friends, therapists, nurses, and a lot were strangers even to Nicole and Randy. Nicole sat at the door and greeted people as they walked in. The band (which was paid for by the Georgetown Kiwanis) played an eclectic mix of music, creating a background atmosphere when it was needed, and then rocked the room later in the evening when guests were more inclined to kick up their heels. The food (which was chosen by Nicole) was delicious and the service timely.
Friends and family members moved about the room selling raffle tickets during the evening and a Chinese auction took place that involved the raffling off of approximately sixty prizes, ranging from restaurant gift certificates, to gift baskets, to a 32” TV and Patriots tickets! We were all excited that Mark and Alissa Gedman won the Patriots tickets. The couple shares a history with Nicole and Randy. They were in St. Elizabeth’s Hospital ICU together last year – Nicole with her stroke and Mark having been injured in a swimming accident in Cancun. They’ve stayed in touch ever since. Mark and Alissa are two of Nicole’s biggest cheerleaders.
All in all, the fundraiser dinner dance was a great success and “a good time was had by all”. Kudos to Joanne Mercaldi for making the arrangements and all her help in selling tickets and soliciting raffle prizes, etc. Thanks also to all those who so generously donated either raffle prizes or money, and those who helped with ticket sales, and all the other details of running an event like this. Randy did a great job coordinating the event and acting as emcee, and Kelly Diamond was delightful, as usual, in calling the raffle. She’s a hoot with a microphone in her hand!
The kids have also been busy with doctors’ appointments, some of which are in Boston. And on Saturday (Nov. 19) they plan to attend the New England Regional Spinal Cord Injury Center Conference in South Boston. The conference is geared toward SCI patients, their families, therapists, and the general public, who will learn about the latest developments in spinal cord injury research, politics and the progress towards a cure. The keynote speaker is Dr. Wise Young of the W.M. Keck Center for Collaborative Neuroscience at Rutgers University. Among the other distinguished speakers will be Dr. John McDonald from Kennedy Krieger Institute, John Hopkins University School of Medicine.
We got to see Nicole on her new FES bike! It’s such a cute little thing (with a big price tag!) and she pedals it so effortlessly, it seems. Electrodes are hooked up to her quadriceps, hamstrings and gluts and the electrical currents stimulate her muscles to fire in a synchronized manner enabling her to pedal the bike herself. The bike can sense when her muscles tire. Then the current automatically shuts off and the bike takes over passive movement. So far, she has been able to pedal for one hour (10 miles) without the stim shutting off. Her next step is to do it with increased resistance. She uses it three times a week. Nicole also has an electrical stim machine for the upper part of her body that the therapists use on her to wake up those muscles. It seems they’re always finding something new, which is exciting.
She just got her exercise table, which folds down from the wall. The therapists can work more effectively with her on the mat now instead of on the bed. The only thing left for her to get now is her shower chair, which is due to come soon. Lately, she’s been able to be off the vent for a few hours at a time, and she will soon be undergoing tests to check for diaphragm activity. We keep hoping and praying…
The best news is that Nicole and Randy are coming to Long Island for Thanksgiving!! They will be driving down on Tuesday and are planning to stay until Saturday. Jenny will be joining us as well, so that should be fun. We’ve changed our door, gotten some ramps, and moved some furniture around, so I think we’re all set for them now. Everyone is excited about it! Most haven’t seen her in many months, or at all since she got sick. Michael, Pam and Diane will be in from Virginia, (so she’ll continue to get PT while she’s here).
On the website, please be on the lookout for photos of Nicole in therapy, and of the dinner dance fundraiser. They will be posted shortly.
A Happy Thanksgiving to all!!
Michele’s update – October 22, 2005
Long Island yard sale tremendous success!!
Despite the deluges during the week of October 10th, our Community Yard Sale, held on our property on October 15 and 16, was a tremendous success beyond our wildest expectations! The community response was overwhelming and people kept remarking that they’d never seen anything like it before. We collected an enormous amount of merchandise, and I had an incredible staff who worked tirelessly for days to organize and price everything. The entire week leading up to the sale was soggy and miserable and each day we prayed was the last day of rain, but alas, it continued. With the help of the South Country Lions (who were on hand throughout the weekend), tents were erected and we set up in the rain on Saturday morning. (Thank you to Guenther Raddatz and Ken Fasano for the loan of the tents.) By early afternoon, it stopped raining and the sun made its appearance late in the day. The dampness, however, did not stop the hordes of people who flocked to our tables from 7:30 am straight through to 5 pm, and the same on Sunday. (Much to Nick’s dismay, our front lawn looks like a circus was held there, and he fears it will never be the same.)
We are most grateful to all who donated merchandise, or assisted with its collection, pricing, organization and sale. Our deepest appreciation to the staff consisting of: Lorraine & Suzy Wood, Bobbie Giuliano, Amanda, & Joanne Giuliano, Loretta Drew, Cathy DeVito, Patti Stephani, the Bjertnes family, Carol Joyce, Laurie Fosmire, Aggie Toronto, Judy Perfido, Sue Velk, Ed Lariccio, Rosemary & Bart Giuliano, Bernadette Giuliano, Marisa & Daria Drew, the Conroy family, members of the South Country Lions, and others who I know I’m leaving out. Then there were those who came with donuts, bagels, pizzas and pastries to feed us. At one point, my great-niece, Amanda, donned a purple Baby Bop costume and stood by the highway with a sign enticing people to stop. And speaking of signs, our thanks to J Signs, Phil Linbrunner and Searles Graphics.
The whole experience was very heartwarming and proves the old saying “It takes a village.” It was very labor intensive, and Nick and I, my family and friends, were exhausted, but we all agree that we had a blast and it proved to be well worthwhile. And of course, without all the people who came, shopped and bought, we would not have made all the money that we made. I am happy to report that the yard sale (and the many donations that were made because of it) brought it over $15,000, the amount needed to purchase the FES bike for Nicole!! (We couldn’t believe it either.) The bike has been ordered, and Nicole reports that it is expected early next week, which she is thrilled about!
She and Randy are most appreciative of the effort it took to pull this all together. Thank you to everyone who played a part in making this project the huge success that it was. And, oh yes, even after giving 20 or so boxes to charity, we have enough items left over to have the sale again, probably next Saturday. Photos from the yard sale will be posted on the website soon. Please check the photo gallery periodically.
And from Massachusetts…
Nicole enjoyed their new deck for the last part of the summer. You couldn’t keep her inside. As long as the sun was out, she was in it. They did most of their entertaining on it throughout September, and we thank Home Depot, once again, for donating the building materials for it.
Nicole’s become quite proficient at her new wheelchair, maneuvering in tight spaces quite easily and does extremely well on the tilt table, maintaining a 90 degree upright position for more than an hour at a time with no ill effects. She has an amazing staff of caregivers and therapists who keep her encouraged and motivated. An exercise mat has been ordered and is expected shortly. That will allow her therapists to do their jobs even more effectively. They are feeling muscle activity that they haven’t felt before, which is encouraging. Her head is much stronger and her shoulder is coming along nicely. Nicole is also making progress with her respiratory situation. Two months ago, Randy would take her off the vent for 10 minutes at a time…now she’s able to be off for an hour. We celebrate each and every improvement, no matter how small, because they are all positive steps. Nicole, however, takes everything in stride.
Randy has been getting Nicole out once in awhile. They’ve been to another wedding (see new photo of her on the message page), out to dinner, and grocery shopping. Nicole isn’t at all happy about the cooler weather setting in, but, hopefully, the snow will hold off so that she can continue to get out occasionally.
When she’s indoors, she keeps busy with her rehab exercises and studying to keep up her RD certification, as well as working with her voice-activated computer. And there’s always somebody coming or going…nurses, OT, PT, massage therapist, caseworkers, friends, family, etc. One day when my family was visiting in September, Randy came home to a houseful of females…Nicole, her aunt, two cousins, her nurse, and three therapists (plus the cat and dog). You can imagine what they must have been like.
Randy has started to go in to work a few days a week and hopes to be able to work from home as well. It’s not easy for either of them. Nicole is very dependent on him, as one might expect. But, I suspect they will work it all out.
Nicole and Randy were written up again in The Salem News and I will try to forward the articles in a separate e-mail. A fundraiser is in the works in Massachusetts to be held at the Danversport Yacht Club on Friday, November 11 from 6:30 to 11:30. There will be dinner and dancing to a live blues band and the cost is $50/pp. Call (978) 282-5575 for tickets or to donate an item for a raffle or auction. Make checks payable to “The Nicole Gregory Irrevocable Trust”. Nicole, herself, will be attending, so if you haven’t seen her in awhile, here is your opportunity! Those of you who live in Massachusetts, please talk it up and help to make this project another winning endeavor. Hope to see you there!
Enjoy the cool, crisp days of autumn. ‘Til next time…
Michele’s update – 9/2/05
It is hard to believe that summer is drawing to a close. Time to fill you in on what Nicole and Randy have been up to….
Early in August, they attended a barbecue in Canton, MA, for those affiliated with the Shepherd Center. They had a good time and even got to go on a pontoon boat. They’ve been out to dinner, have had several parties (he cooks, she directs), and will be attending a friend’s wedding tomorrow. (Imagine what they could do if they had a van!!)
Nicole and Randy made the front page of the Salem News on August 23rd. For those who haven’t seen it, I’m working on a way to get it reprinted on the website. The last time Nick and I were in Massachusetts a few weeks back, I got the bright idea to do a PR item on her myself and try to sell her story to the local papers. I met with a very nice reporter who was very taken with her story and arranged to interview Nicole and Randy the very next day. A few days later he returned with a photographer and the following day the Salem News carried the story on the front page. The reporter will continue to follow her progress (both the good days and the bad days) as he feels people will want to be kept informed of her situation. The article has spurred some website postings offering help, and donations from strangers who are sympathetic to their plight.
I have taken on the job of doing PR for my daughter, and along those lines I have e-mailed her story to all the service clubs in their neighboring communities and expressed the need for fundraising activities in her behalf. We need to get her story out there. (Who knows? They may even get a van out of it.) If anyone has any other ideas for me, please e-mail me at MoonRiver9@aol.com.
We keep in close touch with Nicole and it sounds like things are coming along. She has a wonderful nurse, Cathy, who comes three days a week. They are still interviewing for coverage for the other two days. Along with her medical and custodial duties, Cathy works with Nicole on the voice-activated computer (I got my first e-mail from Nicole the other day) and has been taught to help with her range of motion and neck exercises. Once Randy and Nicole feel comfortable (and safe) with the caregivers, he plans on going back to work. I expect that will be hard for both of them.
Nicole informed me today that they now have a tilt table (like she used at the rehab centers) that allows her to get into a vertical (standing) position). She also has her own arm “skateboard” and a “powder board” so that she can do her arm strengthening exercises at the kitchen table. Cathy will work on that with her too (as will Randy, of course). She still continues to have PT and OT at home.
Nicole’s motorized wheelchair still hasn’t shown up, but is expected next week. Besides needing a van, Nicole desperately wants a functional stimulation (FES) bike like the one she used at the Shepherd Center. Her first visit with her new physiatrist is approaching and we’re hoping he will refer her for outpatient therapy and recommend the purchase of the FES bike (for which they need a prescription in order to purchase).
Lumber (donated by Home Depot) was due to arrive today for a deck to be built from her ramp across the rear of the house. Randy and his dad will build it with the help of some friends.
Randy has been hard at work doing landscaping in the backyard. Nicole watches him while she’s out sunning herself. As you can see from the new photo of them on the website, she is very tanned. (A little too much sun, young lady!!) And speaking of the photo on the website….the cuddly animal on Nicole’s lap is Suzie, Bob’s Maltese.
Nick and I are planning a community yard sale fundraiser at our home the weekend of October 15th. The proceeds will go toward the purchase of the FES bike. If any of you who are local to us have any items you want to donate to it, please contact us after October 1st (as we will be in Massachusetts this coming week and North Carolina for the remainder of September).
Have a safe Labor Day weekend. Please continue to pray for Nicole, and also for all those who are suffering through the Hurricane Katrina disaster in the south. As we well know, life can turn on a dime.
Michele’s update – August 1, 2005
Nick and I returned a few days ago from visiting Nicole and Randy in Beverly, MA. It was our second visit to them since they got back from Atlanta a month ago. They are getting adjusted to life back in the real world, which is unlike the institutional world where things are done for you, meals are prepared, beds are made, and people are always there to take care of every need. Now there’s only Randy. Oh, Nicole has a home health care aide nine hours a week right now, but she still relies on Randy for the major things.
Thankfully, she was approved for many hours of skilled nursing care, and they are in the process of interviewing nurses. One nurse is starting her training this week. They haven’t yet gotten the approval for the personal care attendants (PCAs) so in the meantime, Randy has to handle laundry, shopping, cooking, cleaning, and everything else, on top of dealing with her medical care, home care, insurance, etc. Nick and I go up often to help with organizing stuff, decorating, house cleaning, grocery shopping, cooking, and LAUNDRY!!! Not to mention assisting Nicole, and just moral support. I am also the only other person, besides Randy (and maybe Jen), who is trained to handle Nicole’s respiratory needs, so Randy is able to leave the house to do errands, etc., when I am there. Nick and I come home exhausted after only five days.
The kids need all the help they can get. There’s always something to be done, and Randy just can’t do it all. So, friends and family in Massachusetts, please don’t wait for them to ask for your help, because they won’t. Just know that they NEED your help. Bring a meal, offer to do laundry, or vacuum, or shop for groceries, or do errands. It will be appreciated.
Nicole spends as much time as she can outdoors in the sun and is very proud of her tan. She is looking well and feeling well, but is still having trouble with her “overtoned” right shoulder and arm. Her OT and PT alternate coming to the house five hours a week, but what Nicole really needs is to get into an outpatient program where she can use the equipment she has become accustomed to. (Of course, they would need a van, and I don’t know what the status is on that.)
Nicole’s 29th birthday was last Monday, July 25th. There was a barbecue for her at the house on the previous Saturday. They had about 20 friends come and everyone had a good time. Deb Haine was visiting from NYC that weekend and that made it more special. Nick and I arrived on her birthday with a homemade birthday cake and some local relatives stopped by in the evening to enjoy some birthday cake with us.
A big “thank you” from Nicole to Lisa and (Aunt) Bobbie for the crabcakes (yum!), the Woods for the birthday money, and Michael for the YY products! And thanks, also, to those who brought or sent flowers (Jonathan, that was some bouquet!) and that lovely hanging plant! They were all beautiful!
Nicole is in good spirits, for the most part, and is adjusting to her new environment. She doesn’t yet have her power wheelchair, so she has to rely on someone to push her around and help her with her pressure relief repositioning every half hour. Hopefully, the new chair will be delivered within the next few weeks, which will give her more independence.
Nicole is having her trach changed at Salem Hospital on August 10th. Because it’s been in so long, it has to be surgically removed. She is still battling the ever-present UTI which they haven’t been able to get to the bottom of. Randy’s had to arrange for all new physicians for her in their area.
Verizon has been giving Randy the runaround about their internet service, so that’s been delayed a few weeks. Once that’s hooked up, Nicole has voice activation software that will allow her to send her own e-mails by using vocal commands. That should be interesting! They will also be getting a voice-activated phone for her, among other things.
We expect to be heading back up to see them in a few weeks, and some of my family will be coming as well. Most of them haven’t visited since February and are very anxious to see her. My niece, Pam, and her friend, Diane, were up there to help out when Nicole and Randy first got home and Pam will be joining her parents and sister when they go up later this month.
Please keep those messages coming. Till next time…
(P.S. The photos from the May golf outing are now on the website in the Photo Gallery.)
Michele’s Update – July 1, 2005
(Nicole and Randy wanted to do their own update, but life has been a little hectic for them lately, so this one’s from me again.)
Nicole and Randy are back from Atlanta, GA, and settling in at Randy’s Dad’s house in Beverly, MA.
Their stay at the ShepherdCenter was shorter than we anticipated…a mere four weeks…but the time was put to good use, she had met all her goals, and they felt she was ready to go home.Nicole and Randy were very pleased with the facility and both wish that they had spent more of her rehab time there.I’ll give you a little summary of the past month.
Unfortunately, the big thing…the vent weaning…did not happen because Nicole’s diaphragm is still not functioning.We were all terribly disappointed, but we knew there were no guarantees.Shepherd was not discouraged, however, and didn’t want her to be discouraged, and said she could always come back at another time and wean.They did put her on different vent settings, and she did learn exercises to strengthen her accessory breathing muscles.These she must continue to do on her own, as well as her neck strengthening exercises.
She did master the “sip ‘n puff” wheelchair (she had no choice).Early on it was a funny scene to watch her learn to negotiate corners, braking, etc.One Sunday, on her way into a church service, she knocked me off my chair and took out a few other chairs as well.She had a great sense of humor about it.But the more she laughed, the harder it was for her to run the chair!
She was the first person at Shepherd to use a brand new FES bike with all the latest technology.She loved it and they hope to purchase one for use at home.It is very small and compact and she can use it while sitting in her wheelchair.
Shepherd’s biggest challenge (aside from the weaning) was her very tight neck and arm muscles on her “good” side.She is what they call “over-toned”.They tried just about everything to loosen them up, but the tightness remains.But, she has gotten more recovery on her right arm, and her left arm is gradually waking up a little now as well.
One thing that really surprised me was that the food was so good there that Nicole actually ate three square meals a day!I was shocked!No more Balance bars for breakfast, (and very little candy)!
Nicole had some medical issues while she was there, some of which remain unresolved.When she was at Spaulding in Boston, she passed out a few times which they attributed to a drop in blood pressure (common to SCI patients).At Shepherd, she was doing so with greater frequency, which was very unsettling.We finally came to the realization that it was probably because she was not wearing her abdominal binder.Hopefully, that problem has been resolved.
When she arrived at Shepherd, the first thing they did was to change the tubing on her ventilator so that it no longer pulled to the side (which we had begged them to do at Spaulding to no avail).Now she doesn’t have the discomfort that she had to endure for the past six months.What a difference!They tried to change her trach, but were unable to remove it.The last time it was changed at Spaulding was in early February, and they had a difficult time then.They never bothered to change it after that.In fact, Nicole was told at Spaulding that it could stay in for a year.At Shepherd, they change them every month.Now Nicole has to have it surgically removed!They were willing to do it in Atlanta, but Nicole chose to wait until she got back to Boston.So, she still has that to look forward to.
I would have to say that the most important aspect of their stay at Shepherd was the extensive family training that Nicole and Randy received.There were days when Randy would attend full-day classes himself.Even Nick and I attended several 3-4 hour training sessions during our visits.Having all been involved in her care for the previous six months, we thought we knew a lot, but we all learned so much more there.
Everyone at Shepherd was impressed with Randy and his ability to handle Nicole’s care.He was an eager learner, a quick study, and so obviously devoted to her.They wanted to clone him for their other patients.Many of them expressed to us what a wonderful couple they are and how well they work together.We are very proud of them and have every reason to believe the two of them will be just fine.
Shepherd addresses every aspect of rehabilitation.Their whole philosophy at Shepherd is geared toward getting their patients ready…physically and mentally…to return to as normal a life as possible.The peer support was wonderful.Nicole and Randy met people with similar disabilities who are very mobile and lead happy and productive lives, a few of whom they will stay in touch with.
Although they didn’t get to go on many of the supervised “outings”, Nicole and Randy did spend a lot of time outdoors on the grounds and did get out to dinner at some of the local restaurants on three occasions, once with Nick and I.She handles that very well…they both do.God bless them.
Nicole’s attitude has changed dramatically in the past month.She has certainly not given up hope for continued recovery, but she is now resigned to her situation and her needs as they are now.She was open to all the assistive technology they had to offer, which is a big about-face for her.Everyone at Shepherd commented on how amazing she is.She may be down one day, but bounces right back up the next.If you haven’t read the recent website posting from Maria (one of her nurses), you must do so.It sums up the situation perfectly.
They were supposed to return home by commercial flight, but due to a complication with the ventilator, they had to take a private plane back.They did, however, attend a training session at Delta Airlines to learn how to handle air travel in the future.
So, after being “institutionalized” (as she puts it) for nearly eight months, Nicole’s back in a familiar home environment with her husband on whom she will rely for most of her care.Bob Gregory worked very hard to get most of the renovations done prior to their return.Nick and I are grateful to him for opening his home to the kids.It is important to Nicole and Randy that they resume their lives as close as possible to what they were before.They will be dealing with the homecare company, the respiratory company, interviewing nurses and aides, and so forth.There is so much involved.It will be a challenge, but they will handle it.
My niece, Pam, is in Beverly with them now, and Nick and I plan to go up to visit next weekend.I’m sure that friends and family will give them a warm homecoming!
Their address is:33 MacArthur Road, Beverly, MA, 01915.
Michele’s update – 6/3/05
Just a short note to report that Nicole is all settled in at Shepherd Center in Atlanta, Georgia. She, Randy and her best friend, Jen, left Tuesday, May 31st on an 8-passenger Lear Jet at noon on a drizzly, foggy, chilly Boston day. Jen went with them for moral support and to help them get settled in. She returned home this afternoon.
Reports are that Nicole and Randy are overwhelmed by the amount of attention she is getting from everyone there. They’ve found the people to be friendly, efficient and very kind. When the staff learned that May 31st was their 2nd anniversary, the kitchen prepared a special cake, and a card was signed by all. What a nice surprise!!
The first day or two she spent in ICU for evaluation. She’s already been through a battery of tests with more to come. They’ve changed her ventilator settings, trache, medications, and many other changes have been made in her care and treatment. These people really know what they’re doing and Nicole has every faith in them. There’s a lot going on and the kids are exhausted.
Nicole has to sleep in the room alone for the first time in seven months, so Randy goes there early in the morning and stays until late at night, after she falls asleep. He is staying at a furnished apartment on the complex, just a five minute walk away.
Nick and I won’t be seeing them until next week. It’s hard for us because we’ve always been right there from the beginning and cognizant of everything that was going on with her. Now we have to await daily telephone reports from Randy.
Randy has his laptop with him and there is internet access in her room, so please continue to post messages to her at www.nicolegregory.com.
Lots of things have been happening in the last couple of weeks. Some are good….some we’re not so thrilled about.
I’m happy to report that the golf outing, which was held last Monday, was a huge success! Though the weather was damp and chilly in the morning, over 100 golfers showed up to play and had a great time. The raffles were very lucrative as well, and many thanks to Kelly, Kate, Eileen and Meredith for hawking those tickets! The guys from Long Island, who won some of the Red Sox stuff, turned around and auctioned it off and raised even more money for the trust fund. Randy did a great job in organizing the event. Thanks to all who had a part in helping to make it the financial success that it was, with special thanks to Ralph, Keith, the two Seans and Bill. Hopefully, we will soon have some photos on the website for all to see.
The raffle run by Playcrafters on Long Island also did extremely well, and our heartfelt thanks go to all those who contributed to that success. I’m happy to report that the Gateway Playhouse season tickets and dinners at Old Inlet were won by Karen Gualtieri (I’m sorry Karen, I don’t remember your married name). Karen’s been in some of our productions (most recently “Leader of the Pack” last fall) and her parents have been active Playcrafters for many years.
My niece, Pam, was up for a week to visit and help out with the golf outing. She hadn’t seen Nicole for three months and noticed a big difference in her. Pam’s friend and business partner, Diane (also a PT) came up for the weekend. She hadn’t seen Nicole at all and was surprised at how great she looks and speaks. They both “treated” Nicole and feel she’s got a lot of “juice” and that there’s a lot more recovery to come. Let’s hope so. Pam was impressed with the therapists here at Spaulding…thought they were using innovative techniques and were doing what they needed to do with her. The doctors are another story, and we’ll just leave it at that.
Nicole went on her first outing this past week to Boston Beer Works for lunch, accompanied by her PTs, her OTs, Randy, Pam and me. It was bumpy ride for her over bricks and construction debris, but she didn’t seem to mind. We even tried fried pickles at Jay’s (a/k/a “Sausage Fingers”) insistence. Yuck!
Nicole’s hairdressers came by this week, so she has a new “do” and shapely eyebrows again. Thanks Gisella and Maria! (And the rice balls were delicious!).
Well, it’s definite. Nicole will be transferring to Shepherd Center in Atlanta, Georgia, for further rehabilitation treatment. The expected date is May 31st (their 2nd wedding anniversary). It’s been a long time coming (we’ve been working on this for almost two months). Shepherd is one of sixteen Model Spinal Cord Centers in the nation and deals strictly with spinal cord injury, brain trauma, MS and other neuromuscular diseases. They have a 50% success rate at weaning C3 quadriplegics. They also offer a lot more in the way of recreational activities and community outings, and overall preparation for re-entry into life such as it is. If you wish to read more about that facility, log on to www.shepherd.org.
She and Randy will be flying there via Lear Jet with appropriate medical personnel on board. All transportation and transfers will be coordinated by Shepherd. We are in the process of appealing the insurance company’s decision not to extend her benefits for this facility, and she can’t leave until we have a decision, which we expect will be next week. But, whatever their decision, she’s going.
Nicole had been having some shortness of breath while on the FES bike. When this first started (over a month ago) respiratory was supposed to monitor her carbon dioxide level while she was on the bike. This was not done until Friday, when they were surprised to discover that her CO2 level was too low. Suddenly, it’s become a big problem and they’re drawing blood, attaching monitors to her and fooling around with her vent settings. She’s been at Spaulding for six months. Wouldn’t you think that a vent patient’s blood gases would be monitored on a regular basis? Now you can see why we’re moving her to a Model Spinal Cord Center. It’s too bad we didn’t make this decision sooner, but two months ago they led us to believe they were weaning her, when, by their own admission, all they were doing was “appeasing her”.
Once Nicole and Randy leave Boston, the plan is that Nick and I will go home to Long Island for a brief time, and then fly to our home in North Carolina so that we can commute back and forth to Atlanta from there. Our friends in Carolina Shores miss us and we miss them, so it will be nice to get back down there again. We spent the cold, brutal winter in Boston and will be down south for the summer months. Oh, well.
I would be remiss if I didn’t mention how grateful we all are to our niece, Audrey Woodbury, and her husband Bill (and the kids, too) for all the care and support they’ve given us while we’ve been in this situation. They live in Groton, MA, which is almost an hour’s drive from Spaulding. Audrey brings in cookies almost weekly and she and Bill make many delicious meals for all of us to enjoy. They treat us to dinner and ball games, and Bill’s company has rendered financial support as well. We truly enjoy their visits and are going to miss them very much!
Please continue to post messages to Nicole as she enjoys hearing from everyone. If you are reluctant to post, you can communicate with me directly. My e-mail address is Moonriver9@aol.com. I would be happy to relay your sentiments to my daughter.
Michele’s update: May 1, 2005
I realize it’s been a long time since my last update, and I apologize. I don’t like to post an update unless I have some positive news to relate, and, I’m sorry to say, there hasn’t been too much of that this past month.
Things have been pretty much status quo for Nicole. Her PT and OT is going along pretty much the same as it had been. Nicole finally got her new wheelchair. It’s very comfortable and accommodates the portable vent on a shelf in the back. (A big thank you to my cousin, Lee Flynn, who generously donated a portion of its cost.)
Nicole has been sporting a new Yankees shirt (with Jeter on the back), compliments of her Dad. She gets a lot of ribbing from her therapists, but she eats it up.
On a down note, we were all quite upset to learn from the respiratory “experts” that her so-called “weaning” has not progressed, and they’ve given us a grim prognosis regarding her ability to get off the ventilator. We had gotten mixed signals from her doctors for the past six weeks (with each respiratory therapist having his or her own opinion on things), but the bottom line is that her diaphragm is just not working the way it needs to be. Fortunately, we have learned that she does have some function of her phrenic nerves (which control the diaphragm) so we are not without hope for the future.
In the meantime, time is running out for her at Spaulding and we are investigating sending her to another rehab facility that specializes in catastrophic spinal cord injuries (and vent weaning). Her insurance will not pay to move her to another facility, so she will need to go on a “private pay” basis. God bless all of you for your generosity in that regard. I will continue to keep you updated on the status of this change which we anticipate will happen later this month.
Nicole and Randy wish to remain in the Boston area, so Randy’s father, Bob Gregory, is planning renovations to his home in Beverly, MA. They will relocate there upon her eventual release from rehab. Home care will be worked out when the time comes.
Randy, Nick and I have been packing up the apartment. We need to be out of there by the end of May. Some things are going to Bob Gregory’s house, but most will go into storage. I am packing up the kitchen and the giftware. How sad it is to pack away the shower and wedding gifts that they’ve had for only two years. The china and crystal haven’t even been used yet, but, hopefully, they will get to use them at Bob’s house (if Nicole allows Randy to handle those fragile items). I’m sure there will be many parties there, as they enjoy entertaining and have lots of friends.
I am currently at home on Long Island. Nick left yesterday for a golf trip to Ocean City, MD, with 39 of his old railroad buddies and friends from our hometown. He really needed this trip, as you can well imagine. I will spend the time alone to visit with family and friends and do some spring cleaning! Nicole’s friend, Debbie, from NYC, is visiting with her this weekend, so there will be another “spa day” with Debbie and Jenny giving Nicole the royal treatment. And Muhammed is bringing pizza this afternoon! Hopefully, it will be warm enough for Nicole to go outside. There’s a lovely patio area on the bank of the Charles River.
My niece, Pam (the family “activist”), attended a “Cure Paralysis” rally on Capitol Hill on April 12th to lobby for the passage of the Christopher Reeve Paralysis Act. This legislation (which is expected to be adopted) is about advancing research and improving the quality of life for people living with paralysis. People with varying levels of disability attended and Pam reports that it was a very rewarding and eye-opening experience, and she was deeply touched by it.
There is a golf outing at Widow’s Walk Golf Course in Scituate, MA, on Monday, May 16. It looks as though the outing will be well attended. Randy and his friends are busy working out the details. Interested golfers can contact Randy at (617) 953-5719 or Nick at (516) 635-8456. Keith is handling tee sponsors and can be contacted at (617) 577-1581. Donations of raffle prizes would also be appreciated. Many of Nick’s golfing buddies will be attending from Long Island and we are so grateful for their support.
Playcrafters Community Theatre Group in Bellport, Long Island (of which I have been an active member for 30 years) have been so kind as to run a raffle to benefit Nicole’s Trust Fund. They are raffling off (2) season tickets to the Gateway Playhouse (donated by Paul Allan) with dinner for (2) at the Old InletRestaurant in Bellport (donated by Walter Roe). (The raffle tickets were donated by my cousin, Ken Searles, of Searles Graphics.) Many thanks to all of my dear friends at Playcrafters for their continuing concern and hard work in this behalf, and to all those who have donated to this cause. The raffle will be drawn at the final performance of Playcrafters’ production of Agatha Christie’s “The Mousetrap” on May 15 (shameless plug). For more info. on the raffle, or to procure raffle tickets, call Playcrafters’ voice mail at (631) 748-7863 and leave a message.
Please continue to keep us all in your thoughts and prayers. And if you visit the website (www.nicolegregory.com), please post a message. Nicole enjoys hearing from everyone.
Happy spring planting!!
Michele’s update:March 26, 2005
Greetings this month from Long Island!(We get around, don’t we?)It’s good to be home again for a little while.We’ll be visiting with relatives and friends and spending Easter with our families (including Michael, the webmaster, who will be making a rare visit to Long Island).
I won’t lie by saying things are going along smoothly at Spaulding because this week was a particularly disappointing and aggravating one:
·Nicole had another UTI (urinary tract infection),
·The Stim Master bike (her favorite therapy) is out of commission,
·Her favorite respiratory therapist quit to go to another hospital,
·Her regular nurse is off the case, having decided to work part-time instead,
·Some of the staff is speaking prematurely about Nicole’s discharge, which is giving her unnecessary anxiety and sleepless nights,
·Everybody’s tired and frustrated,
and the list goes on….
It saddens Nicole to go outside right now.The weather is getting warmer, spring is here and she’s still there.Hopefully, she’ll change her mind soon as there’s a nice terrace that she can go out on and have lunch or visit with friends (if it ever gets warmer).
On the other hand, Nicole is glad to be getting more time in the gym.In addition to her regular therapy, her father and I (and Randy, in our absence) work with her on the tilt table a few times a week in the late afternoon.By dinnertime, we’re all exhausted on those days!
Sometimes, with the new things the therapists are trying, they assume really funny positions with her and we all get to laughing!(I should have my camera there, but Nicole won’t let me take her picture anyway.)We go with her wherever she goes because we’re generally needed to help with transferring her, etc.That gets really hairy sometimes, especially with the portable vent having to go everywhere too.Then we’re entangled in tubes and hoses…it’s a logistical nightmare!
They’re still finding new muscles in her right arm showing up little by little.(Wish something would happen with the left one.)Things aren’t happening fast enough for her though (as you can imagine…it going on five months now).
Progress is being made with the vent weaning (again, not fast enough for her, but progress nevertheless).
There had been some difficulties during the night with the staff coming in to turn her and being quite disruptive to them, but she and Randy resolved that problem.Now Randy sets his alarm and wakes up every 3 hours to turn her himself, which has been working out better for both of them.(He’s better at it than they are anyway.)
A fundraiser was held in Georgetown, MA (Randy’s hometown) on March 12th, one of the worst nights this winter.It snowed all day and night and the roads were horrendous, but nearly 100 people showed up and a considerable amount of money was raised for her trust fund.Particular thanks go to Kelly Diamond (Nicole’s good friend from SomervilleHospital who handled the raffle and catering) and Jared and Jen Curtis, to name but a few.Thanks also to all those who donated and solicited raffle prizes.Nicole, Jenny and Debbie had a “Girl’s Night” back at the hospital.
[Hey, Bill W. and Dave S. –we would love to see some of the photos you both took at the fundraiser on the website.Please send to:Michael@nesbitsalon.net.]
We wish to extend our condolences to the Belson family in the loss of their son/brother, Robert, who was killed tragically in a hiking accident.In lieu of flowers, etc., they requested donations be made to Nicole’s trust fund in Robert’s memory.We want them to know how much we appreciate their benevolence.
The Nicole Gregory Charitable Golf Classic is being planned for Monday, May 16th at Widow’s Walk Golf Course in Scituate, MA (www.widowswalkgolf.com).Check-in begins at .The cost is $150 per golfer which includes a light breakfast, golf cart and a two-hour cocktail reception with hors d’oeuvres.There will be a raffle, silent auction, and skill prizes will be awarded for the golfers.All proceeds will go to the Nicole M. Gregory Irrevocable Trust.Informational flyers are available by calling Randy at 617-953-5719 or Nick at 516-635-8456.For tee sponsorships, call Keith at 781-577-1581.Arrangements are being made for out-of-towners to play golf at Widow’s Walk on Sunday afternoon, May 15th.Lodging information will be available.
Nick and I can’t believe we made it through the worst winter Boston has seen in years!!(It is over, isn’t it??)Pretty soon baseball season again!Time to dig out the ole Yankees cap and await the familiar refrain …“Yankees Suck!”(Well, last October we all agreed.)
A Happy and Blessed Easter (and Passover) to all of you.
Message from Nicole – 3/14/05
Hi everyone, it’s Nicole. I just wanted to fill you in on what’s new with me. You all write me, so now it’s my turn to write you!
There is nothing fun about being in a rehab center, but I am beginning to make some progress…. finally! It’s slow, but things are happening and my days are now filled with physical therapy and occupational therapy. My body is beginning to give the therapists something to work with.
Let me walk you through the past six weeks here at Spaulding. It all started with my right shoulder. My therapists said they felt a flicker, and within a week I could shrug my right shoulder, and supposedly once muscles start moving, they “recruit” other muscles. Little by little those shoulder flickers began a chain reaction that has led to muscle return that has spread on my right side. It began in my back, expanded out through my chest and is now starting to move down my right arm. Everything happens very subtly. However, my muscles do fatigue very easily.
My days tend to be repetitious; however, I manage to get what fun is to be had out of them. My therapists and I now use a wide variety of strange contraptions. Just to give you an idea, we use a large balance ball, full arm “swimmies”, arm “skateboards”, the torture “tilt table”, and an electric strim bike for which they put electrodes on my hamstrings, quads and my bum.
I’ve also begun the process of weaning from my ventilator. I am now able to initiate 12 or more breaths per minute on my own for 4 hours (up from 2 hours) which was tested for the first time this past Saturday as my two friends, Jenny and Debbie, treated me to a spa day. I don’t know if it went well because having a spa day is so relaxing, or if my mind was preoccupied with worry about whether or not they were turning my hair orange, or if they would leave me with eyebrows. I am happy to report that the weaning went well, my hair is blonde, and I still have my eyebrows. The next step in the weaning process is turning the ventilator down overnight.
Also, in my last posting I mentioned that I was up in my reclining wheelchair for 2-3 hours. I have now extended that time period to 5-7 hours.
In addition to my physical progress, I have incorporated some “normal” things back into my day to day life. For example, Friday night we have pizza parties, then there is Scary Movie Night, and, as I mentioned above, spa days.
I thought you would all like to know that I have finally cut back on my Fruit Loop intake, but my sweet tooth has grown. I now enjoy a mixture of Swedish Fish, Jelly Belly’s, Mike & Ikes, Sour Patch Kids and Gummy Bears.
Lastly, I want you all to know how much I appreciate all of your support. Words cannot express how much it means to me.
Michele's Update - February 25, 2005
I thought I'd send a short update because I will be out of touch for awhile. Nick and I are flying to our home in North Carolina tomorrow morning for a little break. Nick needs to get on the golf course real bad and we're looking forward to seeing our friends down there whom we haven't seen since October. Randy's aunts and Nicole's friends will be keeping her company during the day in our absence...a nice change of pace for Nicole.
Nicole's appetite is much improved, thank goodness (but still not for hospital food). Her favorite lunch is her Dad's turkey, ham and muenster sandwiches, so he's made a few to leave for her for the next few days.
She's had more muscle recruitment in her back, according to her therapists, and she will be doing some new things in therapy starting next week to strengthen her even more. She's doing really well on the Stim Master and will be up to maximum parameters next week.
The ventilator weaning is going pretty well. They've lowered the vent settings even more when they do her daily testing and she continues to initiate breaths well over the settings, which is a good sign. Time will tell.
Emotionally, she's still on a roller coaster ride, with good days and bad days. But even on her "bad" days, she's doing far better than most would in her circumstances.
As for me, I've found a fibromyalgia specialist associated with Massachusetts General Hospital who will, hopefully, help me with my constant pain problem. I will undergo a series of tests when I return from North Carolina. As Nicole put it, there's a reason I needed to be in Boston.
For those of you in our hometown area on Long Island, Brian Curry of the Long Island Advance will be featuring Nicole's story in his column in a couple of weeks so be on the lookout for it. That's all for now.
Michele's update - February 16, 2005
I’m writing this update from my home on Long Island. I took off for a few days and left Nicole in Nick’s and Randy’s capable hands. (I wonder if I was missed at all?)
The last several weeks have found us battling more staff issues….it never ends! Randy has been taking on more and more duties as he and Nicole are frustrated with the medical staff. Consequently, he is exhausted and we’re concerned about him as well as Nicole.
Our visit with Pam and Michael a few weekends ago was too short, but we enjoyed having them here. They are a wealth of medical knowledge. (Michael was a physician’s assistant in a former life.) We get more information from them than we do from the Spaulding medical staff. Unfortunately, Nicole had some medical issues while they were here and wasn’t at her best, but that allowed them both to see how things are done around here (or not done, I should say).
Nicole had her trache tube changed unexpectedly at 10:30 one evening and, according to her, it was her worst experience yet. Obviously, it wasn’t properly done and was quite painful. She still complains about the discomfort. She also had some intestinal problems that prevented her from getting out of bed. The good part is that Pam feels there are some positive changes in Nicole’s condition since the last time she was here.
Michael brought more of his special body lotions. He was fascinated by all of the hanging cranes (which he is responsible for because of his website). The large birdcage he sent for Christmas is packed full with about 1,000 of them.
This past weekend my sisters and other niece (their sister, Suzy) visited. Unfortunately, once again, Nicole had some off days. It may have something to do with her being off her schedule for the weekends, but this is the third weekend in a row that she was not feeling up to par and didn’t get up.
On the positive side, Nicole has been doing well on the tilt table and the Stim Master (she’s up to 20 minutes now). Her appetite had been off for a while, but it’s gradually coming back. Unfortunately, it’s not for hospital food. She’s beginning to move her left shoulder now as well as her right, and the therapists are working with some subtle movement of the fingers of her right hand.
She still hates the motorized wheelchair but learning how to use it is part of her therapy. She controls it with her tongue (different from the “sip and puff”).
On a sad note, we were advised by the hospital that the fire department wanted the hanging paper cranes taken down. So last weekend, with the family here, we took down almost all of the cranes and lovingly packed them away in containers for storage in her closet. Some of her favorites are still hanging in a special part of her room…for now. Even as I write this, they are still coming in. I received some yesterday here on Long Island.
Nicole has a phone in her room that she can answer by just saying “hello”. I just spoke with her about my return trip to Boston tomorrow via the Port Jefferson ferry and Amtrak (which I have never done before). She proceeded to warn me that I’m going to have to drag my suitcase up and down several sets of stairs, that it’s a long walk from the ferry terminal to the Amtrak station, and that Bridgeport was a dangerous place to be. I’m so glad I called!!
Michele's update - February 2, 2005
As some of you have surmised from reading some of the postings, Nicole has accomplished her first self-initiated movement – her right shoulder! It was amazing for us (after almost three months) to actually see her move something. We are hopeful that the rest of the arm will follow, as she appears to have regained some strength in it. With daily workouts, her neck is getting stronger as are her trapezius muscles.
The ventilator weaning process has finally begun. Every evening, the respiratory therapists turn down the ventilator settings to test her for spontaneous breathing. She has been consistently initiating breaths over and above the ventilator settings. But, of course, this is only the beginning of what we believe will be a long, arduous process.
Nicole is getting over another UTI (urinary tract infection). Last weekend she ran fevers and felt generally lousy so she was bedridden for a few days. It’s always something!
She’s since perked up and has added some new activities to her regimen. She goes on the "tilt table" which gradually gets her body used to being in an almost vertical standing position. With spinal cord injuries (they consider hers to be a sort of injury), this is a very tricky thing because blood pressure can drop drastically, so she must wear an abdominal binder, thigh-high elastic stockings, her legs get bound with ace bandages, and her blood pressure gets continually monitored. She did very well this week and was able to tolerate being at 75 degrees for half an hour. She has also started to use a "Stim Cycle" - a type of exercise bicycle which is used together with electric stimulation of the legs. It takes them 20 minutes to get her ready to go on the machine for 5 or 10 minutes!
Nicole has been attending classes that deal with different issues she is now or may be facing in the future. Being in a health profession herself, a lot of what is taught she already knows. She declined to attend the class on nutrition, knowing full well she could have taught it better herself.
We still have scheduling issues with the staff not doing what they’re supposed to do when they’re supposed to do it, but we’re managing to stay on top of things. We feel sorry for the hospital patients who do not have advocates.
Both Pam and Michael (my niece and nephew) will be visiting this weekend. This is Michael’s first visit and we’re excited to see him. (He’s the brains behind the website and the cranes.) And we’re real anxious to see what Pam has to say about Nicole’s progress.
Well, it’s coming up on Super Bowl Sunday, and here we are in Patriots country. (Spaulding is the official rehab hospital for the New England Patriots, by the way.) Whether they win or lose, this whole town will be in chaos. These people are nuts up here!! (Nicole is rooting for the Eagles. Don't tell Randy!)
Again, thanks to all of you for your contributions to the Nicole M. Gregory Irrevocable Trust.
January 15, 2005
The weeks are turning into months...and the days are grey and cold and bleak...and I watch my beautiful daughter, still lying so still in that bed, and I cry and ask God "why?". But he gives me no answer. I know I must have faith, but it’s so hard.
Nicole’s days are busier lately. She is being treated by the spinal cord team. We get her out of bed in the morning and she is taken to the gym where she undergoes an hour or so of PT. Part of PT is getting her used to different kinds of wheelchairs (which she hates). The rest is electric stimulation, massage, stretching, range of motion, etc. After lunch, she is treated by her OT who puts her through her neck strengthening exercises, and works her arms and hands. She is gradually getting used to staying up for longer periods of time, which exhausts her. By 3:30 PM, she is ready to return to bed for a nap. She is amazed at how quickly the days fly by.
The family (Randy, Nick and I) has been trained to assist in her transfers, which we participate in every day. Randy, being the dutiful husband that he is, can tend to just about all of her needs. He can, and has, taken on the duties of the nurses, aides, and therapists in one way or another. He works a flexible work week by day, and stays at the hospital with her at night. He, along with her father, is her greatest advocate when dealing with medical and staff issues (which is quite often). She, however, still calls the shots.
Some days are better than others. There are smiles, and there are tears... Still, no one knows exactly what to expect. Her condition is so rare. Only time will tell.
I wish to thank all of you who have already so generously donated to the "Nicole M. Gregory Irrevocable Trust". Your donations will help to ease the financial burden brought upon them by this catastrophic illness. For anyone wishing to donate to the trust fund, please send your check or money order to:
Nicole M. Gregory Irrevocable Trust
On Long Island, send to:
Nicole M. Gregory Irrevocable Trust c/o DePalo 800 South Country Road East Patchogue, NY 11772
In Massachusetts, send to:
Nicole M. Gregory Irrevocable Trust c/o Gregory 33 MacArthur Road Beverly, MA 01915
(The following message is from Nicole (with the help of her cousin, Pam)
Okay, cousin Michael (my Godfather)…here is my post:
Hi, everyone…Nicole here. (No, I am not typing this, but I am dictating it). In a nutshell, THIS SUCKS!!
I want to say THANK YOU for all the well wishes, prayers, cards, e-mails, flowers and cranes, etc. And as you can see from the updated photo, I have close to 1,000 cranes already hanging from my ceiling, several hundred in baskets, and I hear there’s another flock of 600+ on their way to Boston. Wow!!
Now, for my typical day. Every morning, Randy and I get awakened by somebody banging on my chest. Then they use an “Electrolux vacuum” to suction my lungs to get me ready for my speaking valve and the start of my day at Spaulding Rehab. By that time, several doctors have gawked at me and asked me to shrug my shoulders (Duh!!). Breakfast (of course, the most important meal) is Fruit Loops, donuts and iced coffee. (Yes, I am a Registered Dietitian.)
Now, for the “ladies” (nurses’ aides)… At they sing their way into my room and greet me with “Good morning, Princess”. They get me ready and “moisturized” for my day. Many of you might not know that my cousin, Michael, has been providing me with his own” top of the line” YY skin care products, which I love (wink, wink, shameless plug).
Then my parents arrive. Mom reads me the web postings and scratches my itches, and Dad handles errands, neck massages and postural adjustments. They help me with lunch, and then after lunch, at , despite my desire to see “All My Children”, therapy begins.
Occupational therapists work with my arms and neck, and at the “transfer team” arrives with the Hoyer lift and reclining wheelchair. This ordeal (involving 4-5 people including family) consists of my donning a corset, wrist splints, support hose, boots, neck pillow and dealing with a noisy portable respirator. I am up for 2 to 3 hours, which is critical to my recovery. I get to tour the 9th floor and spend time in the solarium. By then, boredom sets in and I am ready to get back to my room. While my return to bed is now a smoother experience, getting out of bed can sometimes be a bit rough, with the flopping around of my head, dizziness, nausea, chest congestion and some anxiety. My return to bed is around . The therapists call this “Nicole time”.
By , visitors start arriving. Dinner gets served at and socializing happens between and (when I am at my perkiest).
The bedtime ritual starts at with medications to manage and positioning for pressure areas. Randy puts me through my “range of motion” regimen and readies his bed (finally graduating from a recliner to a cot). My speaking valve finally comes off, but I can get Randy’s attention during the night by clicking my tongue. At last I am ready for a night’s “rest”…however, I get rolled every two hours (nothing a bit of medication can’t help me sleep through, but poor Randy isn’t as fortunate. He is sleep deprived.)
After my goodnight kiss and an evening prayer, it’s off to dreamland (…and yes, I do walk in my dreams).