Hi im new here so hope im doing this right??? i use an electric wheelchair and im just wondering if this is the “norm”? is there many people who is unable to walk? x
Hi Jenny,
Welcome! I'm so glad you posted a discussion for the group!
I'm the only one here who does not have CMT, but suffer from other chronic crippling illnesses. I'm here as a volunteer to support the members.
I'm sure that many others will respond to you, and share their stories.
I'm so glad you found us!
Wishing you well,
SK
Hello Jenny. I can only walk with great difficulty and then for only very short distances. Main problem balance, then feet curling over, then lack of feeling in legs, then fatigue. It is getting that I now, dislike going anywhere and often cancel outings. You are definitely not alone.
I am pretty much like PCM. I try hard to keep going,but I am noticing that my right toes are also starting to curl under. Actually my whole right side is being effected. I worry that this may be the beginning of losing my ability to walk. I,too am unbalanced.so tiring to walk. I find that the effort to walk is causing a lot of fatigue. Jennie,just hang in there. We are all experiencing CMT in our own way. The site is helpful and everyone is here to learn and help each other. Welcome!
PCM said:
Hello Jenny. I can only walk with great difficulty and then for only very short distances. Main problem balance, then feet curling over, then lack of feeling in legs, then fatigue. It is getting that I now, dislike going anywhere and often cancel outings. You are definitely not alone.
Ditto Karen & Jenny. I have gone on 2 outings in the last 2 weeks & feel like I need a month to recover. I will soldier on & keep doing what I can but I am going to ask alot of questions and do more planning before I do things ie I went to a picnic 2 weeks ago up @ 9500 ft altitude & had to walk from the bus to the venue area about 1/3 of a mile on uneven sloping ground & then back 5 hours later. The combination of altitude & my CMT wore me out completely.
We retired to Fort Collins Co. about 10 months ago & yesterday went to an annual music fest called New West Fest--attracts about 100000 people--wall to wall people & a lot of walking--another mistake on my part.I wear AFO'S & they help.Not ready for a wheel chair yet!
Hang in there everyone!
I am still struggling to keep walking but it is very hard. I use a cane when I have to walk a distance or shopping. I also have curled under toes and one of my knees curve inward. I suffered a fracture in my knee in Nov. and cant trust myself to walk without a cane except in my home. Balance is terrible.
Thanks guys 
feel like I’ve been in this group forever already! Xx hugs xx
I use a wheelchair and leg braces when I have allot of walking or standing to do. Also, walking outdoors on uneven surface or in unfamiliar environment; All these affect my balance and reduces chance of falling which I do quite often. It is pretty normal for CMT affected patients to use wheelchairs, scooters or roll-o-matics ( like a walker) I have used an electric wheelchair quite a lot at times also with a lift on it. This was provided by MDA. I cannot use a cane any more b/c of too much stress to the hands, no grip, no use of thumbs and my thumbs are clawed in position that cannot grip the cane; I would drop it and then it would trip me. I do allot of "wall walking" at home so do not lose balance or propreception.
Hi Jenny,
I'm so glad that you posted this discussion, and hope that you continue to do so. This is what makes the group work!
The members here are extraordinary human beings overcoming extraordinary challenges, and I feel very fortunate to know them!
Hi Jenny,
We all seem to have the same issues. I first noticed a problem when my toes curled under. I was planning to have surgery since at that time I was walking a lot for exercise. That was when the orthopedic surgeon told me to see a neurologist. (I didn't have symptoms of CMT that I recognized until I was 70). Instead of surgery, I discovered a toe brace and have been wearing one ever since -- I order it on the internet through "Food Smart".
My problems are that my ankles turn way in and my lower legs get so tired from muscle atrophy, I can only manage to walk a short distance. I also have an arthritic knee that turns out. A cane definitely helps me with fatigue. I find if I sit down, I recover quickly. My doctor recommended P.T., which I did in the spring. I am not sure if the exercised for my legs are helping. The physical therapist did say at my last session that the most important thing is pacing myself, which I try to do.
I did not understand what was going on when my symptoms first appeared. It is so helpful to hear from people who have the same problems and how they deal with them. Thanks to all of you for getting these discussions going.
Phoebe
Hi Phoebe, I replying to your post because I was diagnosed late in life around 69. It's a shame that our feet have to get deformed before Dr's decide to look into our problem. Anyway good luck to you and glad to share with all.
Thank you, Martha, and good luck to you, too.
Phoebe
I am still walking but have fallen several times and my GP referred me to a neurologist in Philadelphia who told me that my legs will never improve and recommended that I use a walker. Meanwhile, I had what I thought was a growth on the bottom of my left foot. I then saw an orthopedic specialist and I was just fitted for a brace (boot) for my left leg and foot. It is very difficult for me to walk,I was diagnosed 17 years and the disease has really progressed in the last three years. I can not keep my balance and have had several bad falls. My fingers cramp and my hands are very week. I take Bacofen for cramping and Pamelor for nerve pain.
Hi Dinny!
I'm glad to hear from you! Sorry you have struggled so! Balance seems to be a big factor in having CMT. I know I"m getting pretty rickety on the stairs lately!
I'm sure the braces help, but carrying around all of that hardware must be tiring too!
I hope it's a good day for you! Always nice to hear from you, Dinny!
Wishing you well,
SK
I have used a scooter for over 20 years due to fatigue as well as pain and balance.
I still use a scooter outside and a power chair inside. I find that my back gets really sore if I use a walker which I only use if I am going out with a friend other wise I use a wheelchair van or Mobility Plus which the city provides for a fee. I also fall a lot due to balance problems. I try and use the wheelchair more and more in my home so I don;t fall as much.
Fortunately I have no issues with my hands. I was diagnosed with Parkinsons disease 3 years ago to I am coping with the effects of that. But I keep on going as we all do to the best of our ability.
Gwen
Hi Gwen,
It's nice to hear from you! Seems you are finding aids for getting around that work best for you. I'm sure there's some trial and error that takes place with that! Constantly adapting is necessary too, I would imagine.
Sorry to hear about the Parkinsons! That just adds to the challenges, but like you say, we have to just keep on going the best way we can!
Take good care of yourself, and please join in when you can!
Wishing you well,
SK
You know we are all struggling with some of the same issues but also each of us might have some different challenges as well; one common thing I see though is that CMT patients are of strong character and keep pushing on! We find ways to continue to have some sort of quality to life and bring some joy to others! Glad to have this outlet to share and support!
CM
hi
sorry it has taken me so long to reply. My vision has been very bad and today is the first one where I could see to read or type. I use a cane around the house and for very short distances but to go shopping or on any outing that involve being outside or on uneven ground I have to be in my wheel chair. But I am finding lately that it is getting harder for my to roll myself in it. It seems that it is too heavy or something now. I do not want an electric chair because I am still having a hard time accepting being in the chair at all. I went from being a paramedic/Rescue to being like this and I have a hard time adjusting. Sorry to steal your link. yes I have problems walking and use my chair when out of the house.
I really feel for you. I too had a hard job accepting that my life would never be the same again. It took me ages to check everything out before I go anywhere, I just used to set off and then find all the difficulties out. I now have everything that I can to make my life easier. If an electric wheelchair will help you: why not have one? Acceptance is part of the process and far less stressful / tiring than trying to fight against it. Be strong jnj2008 you are not alone.
jnj2008 said:
hi
sorry it has taken me so long to reply. My vision has been very bad and today is the first one where I could see to read or type. I use a cane around the house and for very short distances but to go shopping or on any outing that involve being outside or on uneven ground I have to be in my wheel chair. But I am finding lately that it is getting harder for my to roll myself in it. It seems that it is too heavy or something now. I do not want an electric chair because I am still having a hard time accepting being in the chair at all. I went from being a paramedic/Rescue to being like this and I have a hard time adjusting. Sorry to steal your link. yes I have problems walking and use my chair when out of the house.
PCM
Thanks for the encouragement. I will eventually accept and allow the help. To all you out there I am so proud of you and keep up the fight. There will be a cure found someday and we will all be helped. My neurosurgeon said they are making great strides toward finding at least better treatments for us. I just think we all just need to stick together and keep helping each other like we are doing here. I do totally appreciate the support to help me get used to my chair. It IS hard to go from and Ambulance/Fire Truck/Rescue Squad for so many years also raising Special needs foster children to all of a sudden I am the one in the chair and needing the care. I am getting closer and starting to accept it but I also have underlying problems of PTSD and Trigeminal Neuralgia. Again thanks for all the help and I am sorry for rambling but is how my brain works now days.