I was Diagnosed a little over 3 years ago and like you did not lose
mobility. my scar is at C4-C5 and I suffered hand weakness for
almost 2 years, I'm a chair caner so I have "worked "my way past it
but my over all physical strength is much reduced. I have "central
nerve pain" from the chest down and a sensation called "Lhermittes
sign" I shock myself whenever I tip my head down, thats on top of the
feeling of electric current buzzing through my body 24/7 I don't have
banding. this is very different from most TM sufferers but I have
found 2 others like me (one lives in India) my balance is poor but I
do okay without a cane these days (it took 2 years) I need some light
to stay upright. In total dark I can't tell which way is up.
I am sole in the care of my family DR. in my case this works out fine
she has read up on the disease and writes my prescriptions based on
what I've found others taking here. sorry you've had the need to
find us but this is your best resource for help with coping with TM
Mindy King (a PK)
[email protected]
On Jul 26, 2010, at 12:09 PM, Rev. Craig Crossman wrote:
I was diagnosed almost exactly a year ago. I had gone to the ER
because someone at church noticed I was dragging my left leg and
thought I might be having a stroke. No stroke, but after all the
tests were done my doctor came in to tell me about TM. I was
fortunate because he is well-known as one of the best neurosurgeons
in the Pittsburgh, PA area.
I haven’t had a lot of mobility issues until this
summer. Like you I can get around the house OK but I do use a cane
in public. My balance is off enough that I tend to lose it quite
often. It wouldn’t do for people to think the new Baptist preacher
had been nipping at the bottle!
Over the last year there has been a marked decrease in
feeling and function in my hands. I have a lot of trouble even
picking up a pill.
Eleven years ago I broke my back in an accident and
have a partial spinal cord injury, so even on the best days I only
have 20% nerve function from the waist down. The doctor could not
rule out that the injury sort of made me more vulnerable to
something like TM.
One thing… I have read in these messages people talking
about “banding” and it seems they know where on the spinal cord the
damage is. What is banding? I never asked my doctor about where I
am most damaged but I am not sure it would make any difference to
me if I did know. I also know I am older than most (57) to be
diagnosed for the first time.
I’ve had a couple of messages from Gunny. And I read
about his friend who said “It’s about ability, not disability.”
Actually, I have never thought of myself as disabled. I just have
some health issues which means I must do things a bit differently
than others. But so far it has not been a big deal. I am just
stubborn enough to refuse to let it get to me.
From: Patricia Cooley [mailto:[email protected]]
Sent: Monday, July 26, 2010 9:17 AM
To: 'Rev. Craig Crossman'
Subject: RE: [TMIC] TM Info request
WELCOME TO OUR TM CLUB. I AM SORRY THAT IT TOOK SOMETHING LIKE TM
TO BRING YOU TO US. YOU WILL FIND A LOT OF ANSWERS TO YOUR
QUESTIONS, SO DON’T BE AFRAID TO ASK ANYTHING. WE HAVE HEARD IT
ALL AND MOST OF US HAVE EXPERIENCED IT ALL AT ONE TIME OR ANOTHER.
FIRST, LET ME ANSWER YOUR QUESTION. A LOT OF US DO SUFFER IN THE
HEAT, AND WE HAVE TO BE VERY CAREFUL NOT TO GET OVER HEATED. I AM
FORTUNATE IN THAT WAY. HEAT DOESN’T BOTHER ME AT ALL, BUT THAT
MAY BE I AM USUALLY COLDER THAN EVERYONE ELSE. WHEN EVERYONE ELSE
IS WARM, I USUALLY REACH FOR MY SWEATER. HOW MOBILE ARE YOU. I AM
ABLE TO WALK UNAIDED IN THE HOUSE, BUT WHEN I GO OUT IT IS USUALLY
WITH A CANE AND/OR WALKER. I DID PURCHASE A 3 WHEEL ELECTRIC CART
OVER A YEAR AGO, SO I CAN GET OUT TO FUNCTIONS THAT REQUIRE A LOT
OF WALKING.
IT HAS BEEN 2 YEARS THIS PAST JUNE THAT I WAS DIAGNOSED WITH TM. I
HAVE COME A LONG WAY, AND THEY SAY THE FIRST 2 YEARS IS WHEN YOU
WILL GET MOST OF YOUR IMPROVEMENT. I HAVE FOUND THAT EXERCISE IS
VERY, VERY IMPORTANT TO KEEP UP WHAT MUSCLE STRENGTH YOU HAVE AND
TO MAYBE INCREASE IT.
YOUR RIGHT, MANY DOCTORS HAVE NEVER SEEN A PATIENT WITH TM. I HAVE
RECENTLY MOVED SO WILL HAVE TO FIND ALL NEW DOCTORS. I AM NOT
LOOKING FORWARD TO IT, BUT YOU HAVE TO DO WHAT YOU HAVE TO DO.
GOOD LUCK WITH YOUR NEW DOCTOR, AND KEEP US INFORMED ON YOUR PROGRESS.
GOD BLESS AND TAKE CARE.
PATTI - WISCONSIN
From: Rev. Craig Crossman [mailto:[email protected]]
Sent: Sunday, July 25, 2010 12:26 PM
To: [email protected]
Subject: [TMIC] TM Info request
Hello,
I was very glad to find this e-list. I am “new” to TM
having been diagnosed one year ago. We moved from PA to Kansas in
April. This has been a hot summer with 20+ days straight of temps
in upper 90’s to low 100’s, and I find I am having a greater number
of symptoms than normal. Does anyone know if TM patients are
adversely affected by heat? My doctor is not very familiar with TM
and I won’t see a neurosurgeon until September.
Thanks, and God bless.
Rev. Craig Crossman
First Baptist Church
615 W. Webster St.
Colby, KS 67701
W - (785)462-2867/ Cell - (785)443-5154
[email protected]
www.firstbaptistcolby.org
