Charcot Marie Tooth Disease

[lisamarief]

Hello, I am interested in speaking to someone else with CMT I assume I have 1a, I was never told, recently have been experiencing foot pain, just ordered in shoe orthoses,hopefully this will help, I am 42, I was diagnosed at 21.Lisa

[kasales]

CMT has ran in my family. I have recently over the past few years been experiencing increasing muscle weakness in my feet and hands and my knees. My knees were never affected before and now it is hard to stand still and talk to someone. When I have something to help me with my balance like a wall it is great but out in the open is becoming increasingly difficult. I was diagnosed in the teens and had multiple foot surgeries at the Shriners Hospital in St Louis Missouri to help.
Kathleen

[hma14424]

I am now 43 years old, and am in a long line of family members who have CMT in different stages. My biggest complant and worry is the weakness in my hands. There are days when I cannot hold an empty coffee cup, pen, nor type. This is making working difficult, as I often cannot pull a folder from a cabinet, and at only 43, I am becoming very concerned about the future. My balance has always been terrible due to my high arched feet. Wearing heels has never been an option for me, and a bit of staggering and inability to walk any distance is tough.

I experience some type of body ache in my legs or arms just about every day, and have discovered a hot tub and stretching in it of great value. It beats destroying your stomach with high doses of motrin.

I seem to also be suffering from a great deal of fatigue in the past several months. I am not sure if this is a result of CMT or perhaps a bit of depression from the increase in symptoms I have had over the past 6 months. Personally, I have found over the past 20 years since my diagnosis that if I am experiencing a great deal of stress, my symptoms will increase, and never go back to the previous place.

A young doctor friend of ours had suggested that I find something I can do to keep me as physical as I can be. I recently found a woman with lupis who has been willing to train me in riding horses. (Dressage) No brut strength is necessary. I need help in buckling the saddle etc, however, my balance has become much better in only a few months.

I look forward to having the forum as a way to connect with others who have CMT. It's always great to share info with others who are in your boat.

[kasales]

I too have found great freedom from my disabilities while riding my horse. I can let him do the moving while I get to enjoy the ease of getting around. It is also a stress relief since I enjoy doing it. I have muscle tingles and discomforts almost daily and am too thinking about what my future looks like as my disabilities get greater. I am 35 and act as if I am just like everyone else and that is not possible. I am seeing more limitations as time goes by and am increasingly tired and possible depressed as well. My grandfather had CMT and so does my mother. I have it the worst. I try to turn my fears, concerns and disappointments to prayer and focus on my blessings which are many.
Kathleen

[Argonaut]

Hi Kathleen,

I have servere drop foot on the left side and loss of about 50% of my calf muscle. My right side is on its way also. The only thing that is saving me now is the pair of 9 inch military boots I bought for stability. I feel weakness in my hands when trying to button the top button on my shirt. I still play ball with my son. I bought the McDavid ankle braces so I can wear my sneakers. Oh and I am on my feet all day walking and some times some manual lifting. I manage a large retail store. My first time e-mailing anyone about my disability.

Lane

[cookie4020]

Try going to a good shoe store and trying on some S A S. they come in wide widths and r very good shoes. I have found that it is worthwhile to spend $!00 for a pair of shoes which will last me a year or longer & give me much needed relief. I was diagnosed in my early 30's, I am 56 now. I see my grandkids other grandmother who has reumatoid arthritis & is in much worse shape then me & realize how lucky I am. But it still isn't easy living in constant pain. Both my rotator cuffs are torn so I have had 2 shoulder surgeries & 2 foot surgeries. the feet are a lot better & I take a cane if I am going to walk very far. I see that I am not the only one with balance problems from reading in this forum. My family always thought I was clumsy as a child, then as a teen & it just kept going. I don't fall as often as I use to. I think we can learn to deal with this if we really work at it. But after all the alternative isn't acceptible. I'm raising 3 young grandkids so I can't just sit on my butt, darnit! :)
cookie

[kasales]

Lane,
Thank you for your reply. I am really benefiting from hearing from others who share the same struggles. I checked out McDavid's website. I had not heard of them. It looks like they have some great products to help. I work part time in a Childrens Hospital and it is a long walk from my car through the hospital to my lab. I got tired of people staring at me as I walked down the hall. One day I was coming back to my lab after talking to a nurse at the bedside and I tripped and fell in the hall. No one was around thankfully. After that I decided to go to our local MDA clinic and they prescribed me with AFO's. I was not happy to get them but they help me get around when I am at work. I also fit in better and am less "different" when I walk throught the hospital. The AFO's won't be good for the summer though because they are plastic and I have to wear a full cotton socks with them and that just won't work for my activities! I will be seeking an alternative support like those ankle wraps then or some other drop foot help. Boots are a favorite of mine as well and I love to wear them.
Kathleen

[Argonaut]

Kathleen,

The McDavid ankle braces are great in the summer they come in black and white you can wear them with regular crew socks. As for the winter I found a great pair of military boots that give me great support. As for the AFO"s in my book the more you wear them the quicker you will lose calf muscle although most of mine is gone already. They do help you walk properly but they hurt me after a while and all the cushioning they put in didn"t help.

Lane

[kasales]

Lane,
That sounds like good advice. I will look for some boots for the winter. I love to wear them anyway. I agree with you about the AFO's. I could not wear them much because they work and hurt my hip muscles. They make me feel clausterphobic and confined. I love to sit in a chair with one leg under the other or indian style and with those it is not possible.
I am sticking with doing the best I can on my own as much as possible. I am thankful that it is not my heart muscle deteriorating or something like that. When ever I get down it seems I see someone else so worse off than me. I have had some people say some really hurtful and mean things to me in the past few months. They are usually curious strangers that have no tact. After all when you sit and watch everone no one walks exactly the same.
Take care, Kathleen

[Argonaut]

Kathleen,

I have had plenty of people stare at me I just keep going on with my day. I have no pain anywhere like other people who have posted on the site just loss of feeling in my feet. Y ou must continue to walk and exersize each day to try and limit the muscle loss and keep up your strength, I can still run and play ball with my son and go bike riding. Although I cannot move my small toes to much but keep pushing on every day.

Lane