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
