Re:It IS about the Bike!

[Guest guest]

Gretchen:

Thank you for all the work you do to keep this forum going. It is a great place

to learn and find fellow travelers faced with similar struggles in CMT.

In response to your note about biking: I recently completed several week of PT

after my neurologist did a nerve conduction test and determined my CMT had

progressed to what he called " severe " in my ankles and feet. He insisted I get

leg braces and do PT with an eye toward developing a regular exercise routine.

He is not an expert on CMT but he seemed quite familiar with the basics.

I followed through and got braces (I've had them for about 2 weeks now). And

when my PT completed its course I decided to continue the exercise routine the

PT Tech developed for me at their gym. Even though the neurologist discouraged

me from adding cadio exercises using the lower half of my body, the PT tech

persisted with him to get me on an exercise bike. Yes, I know it's not the same

as getting the fresh air outside, etc., but there is minimal risk that I will

fall over hitting a rock!

This was the first time I've had a gym develop a CMT specific exercise regimen

with continuing follow-up. Wow. They are trying to help me hang on to what

muscle I have without injuring myself because of the CMT. I'm 55 and up until

now I've been ignoring my CMT, telling those who asked that it was very mild and

didn't slow me down (that's called denial!).

CMT certainly is no friend of mine but I believe I can fight it best by actively

working to keep what function I have as long as I can.

The new exercise bikes in the gym are way better than they used to be. And while

I'm not enjoying the great outdoors riding my bike sometimes the scenery is

pretty good anyways

:-)

The best thing that happened to me in this series of PT visits was that the tech

taught me a very simple thing I'm not sure how I missed all these years: balance

can get better with practice. Up until now I thought you either had good balance

or you didn't. And I didn't. But with the work I'm doing my balance has improved

a lot in just a couple of months. I now look forward to going to the gym to get

a good workout.

As for the braces... yuck. I mean it is great they can make them so light and

inconspicuous but I'm having trouble admitting to myself that I am handicapped.

The interesting thing is that I think the braces are actually helping me. And

given another week or two the way things are going I'll probably be able to wear

them without even thinking about the fact I have them on.

So... enjoy the ride. The bike is a great way to keep some of what CMT is trying

to take from us.

Thanks again for your work.

-carl-