Charcot-Marie-Tooth disease

[Shadow girl]

Charcot-Marie-Tooth disease - Wikipedia, the free encyclopedia




I have this from my knees down so I can't wear certain shoes they have to be flats nor can I walk with out them on,can't go up a lot of stairs very well, raise my self upward, stand on one leg (which is why I prefer punches), or pick up heavy objects and transfer that weight to my legs. I hate to say that I think its progressing since I havn't had the strength I used to have until a few months ago.
Does anyone else have it and how does it affect you.

 

[Wheelin Rev]

Shadow girl,

So sorry to hear of your CMT dx. I'll add you to my prayer list if you don't mind.

I have a hereditary disorder know as MELAS; a mitochondrial myopathy. More info about me and MELAS can be found on my website at

MELAS Journal

I mainly mention that since both of our disorders are part of the overall Muscular Dystrophy Association's programs. I don't want to bore you with information you already know, so I'll keep this post real short. CMT is discussed at the MDA's webpage at

Muscular Dystrophy Association

In case you did not know, you have a lot of benefits available from the MDA. In addition to the MDA's loan closet of equipment; funds for the purchase of new equipment and maintenance of equipment is available to you.

Again, I'll keep this short. Feel free to contact me if you have any questions. I just want to make sure you know some of the benefits available to you. Of course, there are many more organizations that include CMT in their charters.

As a result of my MELAS progression, I am now a full-time wheelchair user. I am not one bit any different than most folks although I do have round legs.

My best to you and please don't hesitate to contact me publically or privately.

Dave

 

[Shadow girl]

Thanks Wheelin Rev I'll check out those links.They sound interesting and useful.

 

[gnulinuxman]

I have this from my knees down so I can't wear certain shoes they have to be flats nor can I walk with out them on,can't go up a lot of stairs very well, raise my self upward, stand on one leg (which is why I prefer punches), or pick up heavy objects and transfer that weight to my legs. I hate to say that I think its progressing since I havn't had the strength I used to have until a few months ago.

Awww... I'm not exactly strong myself, and I have no known physical "disabilities". You'll always have my love and support.