High top sneakers do the trick too. Rosalie
In a message dated 10/31/2011 8:46:08 P.M. Eastern Daylight Time,
jcs...@yahoo.com writes:
and another benefit Dalton is that you can feel cool wearing them
again,,(i like your trade mark sign for TM) ’¿¨
When I was in hospital with Tm 6 years ago the first question everyone
asked was whether I had a flu shot. They thought that that may have been the
cause of my TM. I did not have the shot however. I was in rehab for at
least 6 mos. and every nurse I met said they would never take the
Parking is my biggest gripe. I use an accessible van and need to get out
using the ramp on the passenger side. 3 times this month someone was
parked on the stripes adjacent to the parking spot. One time I called the
police and he didn't even know how to write a ticket and for what
My husband purchases drugs from Canada. He uses a company in Florida who
orders them for him with a USA prescription. But , these drugs are also
available here. You can also order from the internet. Take care, Rosalie
In a message dated 9/14/2010 4:13:12 P.M. Eastern Daylight Time,
Is it quiet or am I knocked off the list.
Hi Bernie, I am back in Woodbury. Hi to everyone also. I Dont write too
often but missed all the emails. This weekend in NY on Long Island there
is going to be an independence expo sponsered by United Spinal. It is very
informative and shows all the new innovations in wheelchairs,
testing
I have had good success with Activia yogurt. I also take acidopholus
tablets. It might help.
Godd luck and Happy Holidays. Rosalie
I guess I am the oldest. Age 67 in 2005
Candy, I am going to be at the Marriott on Marco Island the last weekend
in Oct. (31-3). Celebrating my 50th Anniv with friends. Come on by and
I'll cut your steak. Never been to Naples but will probably do some
sightseeing there too. What is a good restaurant there? I live for most
Deb, where do you live in Suffolk county. I live in Woodbury but am
leaving for Florida in 2 weeks. Did you or your husband work at Stony Brook
Hospital - I seem to recall I once spoke to someone out east in Suffolk.
Let me know. Rosalie
In a message dated 9/19/2009 7:38:31 P.M.
Rosalie Green Delray Beach, Fla. from Oct. to May.
In a message dated 9/14/2009 6:49:16 P.M. Eastern Daylight Time,
cakal...@embarqmail.com writes:
Candy K. - SW FL - Naples, FL
Prayers and thoughts for you and yours,
Candy K.
- Original Message -
From: Debi
check out the video from Scott Chesney.
From: peter.wilderot...@christopherreeve.org
To: aca...@aol.com
Sent: 6/29/2009 7:16:09 P.M. Eastern Daylight Time
Subj: You can help find the cure for paralysis
_Click to view as a web page._
just a test
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I have hand controls in my van although I do not use them. Tobe, I live in
Woodbury , Long Island and use a company called Accessible Vans and Mobility
in Bethpage (J. bussani, Inc.) tel # 516-938-5207. They would be able to
tell you where to go in Brooklyn. I think the cost was about
Hi Bernie, Rosalie here, now in sunny Florida. Just went for an
evaluation with the bioness system (walk aid). It is used for drop foot and
helps to
lift your ankle up so you dont drag on the floor. Didn't work for me.
However my foot doesnt really drag so much. I thought it might
I have had strange sensations with my sense of smell. Sometimes I smell
things similar to the smell of smoke. First I thought it was coming from my
air conditioner in Florida but when I got to NY it was the same. Neuro sent
me for brain eeg and mri. Both showed nothing. I guess I
Its funny you should talk about cold sores and herpes virus. I never had a
problem with that in the past and that was the first thing I was asked when I
got sick (Sept. 05). Right now I have sores on my tongue which is probably
some sort of herpes. Very annoying. I am taking an
Hi Tobe in Brooklyn (where I was born and grew up and went to Brooklyn
college), Too bad the discussion is in Feb. I will be in Fla. at that time
or I
would have tried to make it. Sounds like it would be interesting. I hope
you go and report back to us about it.
Take care,
Hi all, Just met someone through a third party who came down with TM .
She doesn't live too far from me and would like to be added to the list.
Dont know if I gave her the correct way of doing it.
Would someone email her and let her know how to subscribe. Her email
is [EMAIL
where is all the mail
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Hi, I occassionally travel by air with my manual wheelchair. I ride it up
to the gate. However I can use a walker to get to my seat. If you cannot
do that the flight personnel are usually wonderful. They have a special
aisle wheelchair and will transfer you themselves into your
Akua, I cant tell if you are a girl or a guy by your name. Anyhow, we
once ordered a van to take us to the airport with my wheelchair. Well, a van
came but it had 2 huge steps to go up. Fortunately the driver was a big
burly guy and he lifted me up. (I am only about 120lbs.) My
I stepped on a live wire Labor Day weekend (Sept. 05) or so it seemed.
Didnt know what hit me. Couldnt move my legs at all. For the first 5 mos. I
was
in rehab 6 days a week, twice a day. After that I have been faithfully
going to some sort of therapy and training 2 to 4 times a week
* Labor Day Weekend 2005( Saturday) on the way home with a brand new
car and felt tingling in my legs. Stopped at my daughters house where the
tingling felt like I had stepped on a live wire. Went to ER. Was told it
was
sciatica and given a pain pill and sent home.
Next day
Funny. Everyone has a different opinion. Dr. Weil says to cut down on
proteins in the diet. But, I have had several doctors who told me to
increase the protein to help build up muscle. What to do??
Rosalie
**Check out AOL's list of
Hi All, Glad to see people are back emailing. I thought Iwas off the list
for a while. Well I am back to Florida from New York. I need the warm
weather as Iam sure alot of you guys do.Problem is when it is warm, most
places are highly air conditioned. The top half of me is warm
I too, wrote and received emails from Cody and her mother and from Allen
Rucker. Will someone please send me the email address for Oprah I will write
to her also.
By the way, this past week, on one of the news programs (in the New York
area) there was a quick report on an unusual
Trudy, Thank you too.I am sorry you are with pain all the time. My
biggest problem is my rear end. I have a constant burning sensation , no
matter what I sit on. Go explain that to people. Anyhow, no use in
complaining. It wont change things.Just put a smile on your face
For all of you that are Jewish and everyone else, have a Happy and Healthy
New Year. May the coming year bring us all peace and a feeling of well being
and perhaps a little more medical insight into our problems.
I, for one, have not felt normal since Labor Day weekend 2005. If
Anyone out there? Havent seen any email in a few days.
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Hi, I have a Jazzy wheelchair and it is a life saver. I also have a manual
chair which my therapists really wanted me to use to keep upper body
strength and perhaps I would walk with my walker more. However, at this point
in my
life I have to make things easier for me and my husband.
Hi Kevin, I am kind of light weight and flexible so I bend down and can
lift up the foot rest which is pretty heavy. Someone I know uses a pole with
a
hook on the end (actually I got one in rehab which is used for a dressing
aid). He is able to lift it up with that. the foot rest is on
Havent received mail in 3 days. Whats up??
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Yes, I was once told to stand at least an hour a day. Dr. said when I
watch tv to try to stand up during the commercials and it would probably add
up
to an hour by the end of the day.Rosalie
** Get a sneak peek of the all-new AOL at
Ann, Naomi, Gary, etc. My story is pretty much the same too.Was
thunderstruck Sept. 05. Still havent been 100% diagnosed but I am pretty
sure
its TM. Have gone to numerous neurologists - I dont know why. They dont
really do anything. I just figure there may be something new
Hi, When I first went into the hospital 9/05 the doctors didnt know what
the heck I had. So they started me on IVIG. They thought I might have
Guilliame Barre Syndrome. I was on it for 5 days - 3 bottles a day. Very
fine
hospital (teaching hospital) on Long Island in New York. The
Alton, I do have a power chair which makes it easier to get around. I used
to putter with clay as a hobby and work on the potters wheel but you need to
put your whole body into kneading the clay. I cant imagine doing it in a
sitting position. Maybe if I sat on a high stool. As far as
I dont think coincidences really happen. There is something more to it. My
next door neighbor in a condo (we shared a party wall) was diagnosed with TM
about 12 years ago. He was around the same age that I am now (a little bit
old). Same symtoms that I had and spent the rest of his life
HI, I had been seing a neurologist - in New York- about every 3-6 mos.
since I was hit with TM (Labor Day Weekend 2005) - still a question of my
diagnosis. I have no idea why I go because he looks at me and says what's
doing.
Tests the strength of my legs, watch me try to walk with a
Naomi, I was told by one neurologist that it takes a year to to see where
you are at and that is probably where you will stay. I am in a wheel chair
although I can drag myself around with a walker. I can walk with it but
cannot
stand on my own so that when I get anywhere in my house I
Hi, cant believe you are talking about an itchy, burning scalp and
forehead. Before I was hit with TM (Sept. 05) I was getting itching and
burning
down my back and then on my scalp. I also dismissed it as dry skin. But now
I get really itchy scalp and little itching bumps on my
Does anyone know anybody who actually went to China for stem cell therapy.
If so, do you know the results. Thanks, Rosalie
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Hi, This does seem the norm for those of us with TM. I find that it is
very difficult for me to be in an air conditioned room. If any cold air hits
my upper body my legs seem to be in a bucket of ice. I live in Fla. and my
house is always kepton the warm side as I cannot take any cold
Dear Susan, Wow, its been a long time. I have been in Fla. for the
winter. My core muscles couldnt get any stronger. I have a personal trainer
twice a week in my fitness center and I go to aquatic therapy twice a week
too.
Being in the water is the absolute best. I walk backand
I too had a fairly quick onset of TM (still not fully diagnosed) Labor Day
weekend 2005. Felt like i was standing on a live wire down both legs and
became paralyzed from the waist down. Now can move my legs and even drive but
cannot stand alone or walk without a walker. My primary neuro
Leaving for Fla.from NYOct. 14 in the new minivan - my husband will
do most of the driving. I dont know how I will sit so long but we will
see. My biggest problem is my rear end. Because I lost alot of
muscle tone in my glutes I am sitting on bone - no matter what I sit on.
Any suggestions
Thanks for the advice on sitting for my trip. Will let
you know how it works out. Rosalie
Hi Deb and everyone else on the list. I too, stay in the
background. I just recently got a new minivan. I get in with a
power chair but I can get into the front seat on my own. I took hand
control lessons but hated it. I can, however, drive with my right leg but
put the hand controls in
Hi Krissy, I dont usually write but I can relate to your
driving. I drove last week for the first time in a year also. I
learned hand controls but hate them so I do drive with my foot. Dont you
just feel great. Rosalie
Hi Bernie, I live in Woodbury and am seeing a neuro from North
Shore Manhasset Hosp. I was taken ill this past Sept. As of yet not
really diagnosed. First thought it was GM, then TM or a spinal cord
stroke. This Neuro (Jeffrey Nelson) took on my case after all the neuros
in the hosp. threw
Hi Heather, Thanks for the input. Fortunately, I do not have
alot of nerve pain now but do have crazy feelings of heat and cold. I too
am just coming to an acceptance. Can't believe it because for the past 30
years I was an A tennis player and then a fairly decent golfer (thats where I
was
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Hi, Anyone out there knows who I can contact to redesign a home office for special needs. I live in New York. Thanks, Rosalie
Can anyone give me an address to contact this Mr. Graves that you are all talking about. I would like to know what the Miami project is. I stay in southern Florida for the winter and am thinking of going to the Cleveland Clinic which is near Miami. Maybe they can tell me what I have. Of course
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