Man uses CMT condition as inspiration, not excuse

[Guest guest]

Man uses CMT condition as inspiration, not excuse

http://www.lansingstatejournal.com/apps/pbcs.dll/article?

AID=2008811040338

When he was just a fourth grader, Steve Santer of Haslett was

diagnosed with Charcot-Marie-Tooth, or CMT, a condition that causes

people to lose normal use of their feet, legs, hands and arms. CMT,

the most common among inherited neurological disorders, causes nerves

to the extremities to degenerate and muscles to weaken because of the

loss of stimulation by the affected nerves.

" I was cramping up when taking tests, and was always very clumsy, "

Santer said. " When I got diagnosed, I was told that I was never going

to be physically active and that I should focus on academics. "

Couch potato, however, was not a prognosis the 27-year-old Santer was

willing to accept, and his actions reflect dedication to an active

and participatory life style.

Two weeks ago Santer completed the Free Press Marathon in 5:03:25. He

admits that this was not a great performance, and that he didn't

train all that hard for the race. His major motivation for running

was that he liked the official race jacket.

Santer's personal best in the marathon was more than an hour faster.

In May 2007 at the Bayshore Marathon in Traverse City, he ran a

4:01:51.

Later in 2007, Santer ran four marathons in 45 days: the North

Country Trail Marathon in September, the blistering hot Chicago

Marathon (Oct. 7), the Free Press Marathon (Oct. 21) and the Grand

Rapids Marathon (Oct. 28).

Overcoming adversity

CMT has affected nerves in Santer's hands and feet. He experiences

numbness, has high and rigid arches, and there has been some muscle

wasting in the lower leg.

After being diagnosed, Santer wore a leg brace that went almost all

the way up the calf, and his legs weren't strong enough to hold his

feet out at a normal 90-degree angle. The condition does limit

flexibility, so he stretches more and does yoga four times a week.

His decision to become something more than just a spectator came

during his freshman year in high school. Much to the chagrin of his

doctor, Santer tried out for the Northville High wrestling team.

" This was the first time that I ever really challenged myself, "

Santer said. " I wanted to find out if what the doctors were telling

me was true, that I couldn't be physically active. At my school, they

didn't really cut anybody from the team. We had three weeks of tough

conditioning. If you made it through, you were on the team. About

half of the kids didn't make it. "

Santer made it and wrestled through all four years of high school,

where he set a record for most consecutive losses with 175, and for

the most losses ever. He had one win which occurred during his senior

year.

" Just because you're bad at something doesn't mean that you don't

enjoy it, " Santer said. " I enjoyed the physical challenge of

wrestling, and all of my teammates were incredibly supportive. "

To recognize his tenacity and dedication, the high school where he

wrestled established the Steve Santer spirit award in his honor.

Moving up a level

During his college years at Eastern Michigan University, Santer moved

on to bicycle racing.

" I was reasonably competitive and did primarily road racing on hilly

courses because I could climb well, " Santer said.

Next came triathlons, where Santer found running to be quite

difficult.

" Biking came to me fairly easy, but running was always a challenge, "

he said. " I wanted to see if I could make running easier for myself,

and gradually started to enjoy it. "

Santer notes that he is a bit of an anomaly in the CMT community,

because most of his peers are not physically active.

" I believe that it's more of a mental thing than a physical thing, "

he said. " You can be an athlete with CMT. You just have to know your

limits. I believe that having this condition has made me a better

marathoner. It's very much in a mental way. I know that I've come

through something that is much more difficult to deal with than a

marathon. "

When not out running, Santer works for the Playmakers store in

Okemos, where one of his functions is to help coach novice runners

and walkers for Team Playmakers. " I find it enjoyable to talk to

people and watch them go through changes, " Santer said. " They

ultimately do things that they never thought that they could do. I

enjoy seeing that, because I was in that situation myself. "

CMT is degenerative condition, but generally does not limit life

span. " It effects me in lots of little tiny things, " Santer said. " My

writing is poor, I'm still clumsy and I trip all the time. "

He says that as his life goes on, his condition has the capacity to

get worse, but Santer seems determined not to let CMT get the best of

him. This coming spring, he plans to run two more marathons,

including the Flying Pig Marathon in Cincinnati, which is know for

being a hilly course.

[Guest guest]

Gretchen

Now this is what I call inspirational. I guess I too am somewhat of an anomaly

in the CMT community, because I've used this disease as an inspiration to push

myself even further. Having been physically active most of my life, the initial

onset of this disease did begin to affect me tremendously.

After years of being poked, prodded, and misdiagnosed, I was

finally able to learn what I had and then went about finding ways to live with

it and find ways around it as well. I'm no spring chicken, but thank God I don't

look or act my age.

If I had decided to just sit at home and give up, my life would have ended then

and there. Of course I realize that this disease manifests itself in all of us

differently, and that some

types are much more debilitating.

Just the same, I've recently met someone's son who has

scoliosis, kyphosis, and a host of other problems, but he is so full of life and

won't let most things stand in his way. His mental attitude and outlook are

incredibly positive, and as a result, he excels where most people normally fail.

I really believe that a very positive attitude can help you overcome a lot of

obstacles if you stay focused on your desire to live

life to it's fullest. I hope this doesn't come across as being arrogant or

aloof, but rather serves as a wake up call to many who have just basically given

up. Yes Virginia......there is

a Santa Claus.........and yes guys.........there is life with CMT.

Mark

[Guest guest]

Amen to Marks post! ;-) Everyone has issues, but not everyone has a good

attitude or even tries to have one.

Kay

[Guest guest]

Thanks Mark, that truely was a good read I remind myself of that alot.

Elaine in Florida