Input from American RN

[esereht]

Am 85, late onset CMT. Several years ago began breaking bones (balance problem) and was diagnosed. Have several other med. problems as well.

The worst thing about the disease is that Drs. admit that the money and energy being put into it by their group is with cause and not treatment.

When I was told this "in all honesty" I was livid but since have developed my own treatment plan and am doing well.

Bought a rowing machine (cheapest) and after very slow start now row 15 minutes every day. After two years have developed muscles in thighs, arms (upper) backside that help a lot to prevent falling.

Began to paint. When you are in the process you sort of phase out like meditation.

Take long nap every afternoon and many times have family members over for dinner (easier than going out). Enjoy cooking and love my family and vice versa

Live alone in a big, old house and intend staying there. Got a large coonhound for company and safety and most of the time am content and quite happy.

[Theplantlady]

Thank you for sharing this.

[beachwine]

I'm 72 & I am with you. It's all about the cause, but no one seems to care about any treatment. So working with various doctors I do the best I can.

[Amanita]

Hi, Esereht,

I like your attitude!

Sounds as though thanks to your proactive approach you are doing a great deal better than just keeping going.

But how on earth do you cope with a great big dog that surely needs long walks....

[Ladywonder]

I love that you have a coonhound I have a bluetick he is a hunting dog so stays outdoors. Many of our other hounds had been house dogs/hunter though. I truly believe that they should engage everyone with cmt in physio therapy from a young age and do a 2 year refresher . I was amazed at what my physio did for me