Craig,
I was diagnosed over 3 years ago. I was paralyzed from my shoulder blades to
my toes. With steroids and massive physical therapy, I walk around the house
sometimes unassisted, sometimes with my cane. I use a wheelchair for any
distance walking. I was 60 when I was struck with TM. Many of the
others were
in their 40's, 50's, and 60's. We also have some children that have TM.
My doc's have told me where, specifically, my spinal cord damage is, but, like
you,
I don't pay much attention to it. I just keep on persistently exercising my
legs and being in rehab. Rehab is a tremendous help to me. I also see a
pain-management
doctor for nerve pain and pain from severe arthritis in my lower back. Nerve
pain and arthritis really irritate each other!
The doctors could find no reason for my getting TM. They said most people
who get it have had a really bad cold or severe flu a couple of weeks before.
I had neither.
The banding is a tight, squeezing feeling on some part of the body parts with
TM. Mine is minimal, but some of us have a lot of pain with it. Don't
know why it
occurs. Keep us posted on how you are doing - especially with your hands now
being a problem. Great hearing from you again.
Janice
From: Rev. Craig Crossman
Sent: Monday, July 26, 2010 11:09 AM
To: 'Patricia Cooley'
Cc: tmic-list@eskimo.com
Subject: RE: [TMIC] TM Info request
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:patticoole...@gmail.com]
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:revcross...@gmail.com]
Sent: Sunday, July 25, 2010 12:26 PM
To: tmic-list@eskimo.com
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
revcross...@gmail.com
www.firstbaptistcolby.org
