How to deal with the disease as it progresss

anyone out there that wants to talk and discuss how you deal with travelling or going on vacation? over time, it gets more difficult to stay on my feet. how do you deal or cope with it?

Hello, there! The holidays are usually a mess for my body. I try to take it easy, and have gotten better at asking for help from my family. No more in store shopping for me! Everything is done online except for the stocking stuffers. I try to taake it easy with the holidy meal and have cut a lot of things from the menu which has made things a lot easier. For me, making that meal can often be the most taxing part! Simplifying it has been a life-saver.

Also, I used to get really stressed out about getting a gift list made up for my family. Over the year, I listen for things they say they want or if they're really into a new thing, I make a note of it. By the time November rolls around, I've got a great list that I can email out to everyone. It has ended up being a really cool thing because my boys and husband end up getting things that they don't remember mentioning!

I dont take long trips anymore. I am like you, most of my shopping is done on line. I am not able to walk a long time because i have terrible feet and balance. You know what i've accepted my limitations and are ok with it now. Sometime the leg and foot cramps are very bad but i just wait for it to pass. I have type 2 CMT so my symptoms are not as bad as others. Have the best Christmas you can possibly have. My son is doing the cooking.

I tire out very fast if I have to walk using my cane. I have gotten a joystick scooter (we bought at auction) and we got a VMI accessible van--now I can shop and run errands without wearing myself out. To have the freedom to go by yourself when you want and where you want is invaluable. The modified vans are pretty expensive but there are used ones you can find more reasonable.

Don't give up any more independence than you have to!


I am new to this group

. I was very pleased to be allowed to join this group. I hate losing my independence. My 67 yr old hubby has to push me around in a wheelchair when we are outside. I am sure other sufferers appreciate the safety of being in their home though, we can move around more freely, there is always something to hold on to. I do hate talking about it tho cos there are so many people far worse off than us. It is a very debilitating disease tho and I am thankful to my hubby and family for their help. xx

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I have just been diagnosed with severe CMT and i dont understand whats happening i just know i hurt and am in a walker i an scared to death please someone tell me im not alone. My whole life has fallen aoart in frint of me and i dont know what to do to stop it. I dont know how to start a discussion on here but i am so depressed and really need someone to say ill b okay

to me, its just getting used to it. Every month, I have to constantly adjust my movements or walk slower, etc. I have had to slow down on everything and just get used to it, Just prepare to adjust to your situation because it will be changing all the time. Just know that you are not the only one out there with this and we can support each other on these forums.

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My 8 yr. old son has just been diagnosed with CMT1a. (We think my father has it as well, I show no signs of it yet.) My son has a little weakness in his left ankle, trips quite often, bad balance and not a lot of leg strength. I am wondering how progressive it is. My dad didn’t start to show signs of it till he was in his 20’s. My son only started showing signs after his surgery to release his achelies tendons (which I guess was a sign that he may have CMT.)

Does anyone receive services through the Muscular Dystrophy Association?

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I have found in my family that it can show up at various ages and can progress at various rates. The Drs. at Mayo Clinic said to exercise but don't overdo. My physical therapist suggested I start taking Creatine -- which I have. Just a small scoop in a hot driink (I put it in my coffee in the morning and can't even taste it). Also, something that has helped with walking with weak ankles and balance problems is wearing mid top shoes. I usually order Ryka online and try to make sure they are light weight. Also, wearing the ankle supports like you can buy at Walgreens will do about the same thing as the mid top shoes--just a little more trouble to put on. My Mother passed the CMT on to me and she didn't start showing any weakness signs until she was in upper 60's.and then we just thought it was cause she was getting older; she did have a humped shoulder much earlier but it didn' stop her from doing anything.

I have received services for both me and my daughter through MDA--we used to go to their clinic. The have bought leg braces (AFO's ) for my daughter and bought scooter batteries for her in the past. I don't know if they still do the battery purchases; I think they cut back on some things.


Bobby, have you seen Creatine make any difference in your muscles?

I haven't taken it long enough and exercised consistantly to tell yet. I skipped exercise for about 3 weeks during Christmas but I intend to start back Fri. and I think I can tell in about a month. Right now, I think I have seen a little difference but can't say for sure at this point.

p.s. ask me again in about a month