Coping with CMT
86Charcot-Marie-Tooth syndrome is a genetic disorder that can affect anyone, regardless of gender or race. It is one of the most common inherited disorders of the peripheral nervous system affecting about 1 in 2,500 people, and yet it is relatively unheard of. This may be due to the manner in which the condition is first noticed, or the fact that sufferers tend to just get on with things.
Of course none of that matters when you or your child has the condition, and life has to continue as close as possible to normal. And this may be one of the reasons that it is so unknown - normal life can be very normal. I have this condition, so the following advice is very much based on my own experiences. If you are in any doubt, seek proper medical advice.
Perhaps the most difficult time for anyone with this condition could be before the diagnosis is made. CMT is a progressive disorder, where the muscles in the feet and hands weaken, and inhibit movement. Children can appear to be physically normal, except perhaps being prone to trips and falls – but what child isn’t? I went through school, totally unaware that anything was wrong, but looking back the signs were there.
As the muscles weaken in the foot and ankle, the feet tend to point downwards while walking. This is called foot drop, and can be caused by a number of conditions. This leads to the toes hitting the ground first, rather than the heel. Now this may not sound too bad, but if your feet are always pointing down, then the chances of tripping over is greatly increased. To over come this, the child will naturally learn to lift their legs higher, resulting is a peculiar walking style. There is a tendency to pay far more attention to the ground ahead, with the head always looking down rather than up. These are the first signs that I recognise from my school days; I was always falling over, and being made fun of because of the way I walked. It is important to remember that this does not happen over night – if it did, it would be blatantly obvious to all. Rather, it is something that develops over years, so slowly that a parent, teacher or even the child may not notice. This can mean that a child has to put up with taunts by fellow pupils, which can affect self-confidence. If the condition were more obvious at an early age then schools would be in a better position to monitor such behaviour. My experience was that I was just known for being a bit clumsy, and not much good at running.
There will come a time when something happens that indicates that things are not right. For me, this was whilst at a kung-fu lesson, trying a particular move. It involved putting the weight on the heels, lifting the toes up, and twisting the feet outward. Try as I might, I just could not lift my toes up and complete the move. My instructor was willing to over look this, but a second blocking move also caused problems – this time with my hands, keeping the fingers straight, pulling the hand backwards to 90 degrees. I could only do this with my fingers curled. I am thankful to the instructor for saying I should get it checked out, as I would never have noticed it. I was 18 at the time.
Whichever way the condition comes to the fore, seek proper medical advice. There are a number of diagnosis methods that they can use, including DNA tests and electrical stimulus of the nerves. Whilst there is no cure for the condition, you can take preventative measures to help elevate the effects.
The day-to-day effects of the condition when you are older, can be more difficult to define. This may sound strange, but remember, this is a slow progressive disorder. You will not notice a change from one day to the next, or from week to week, or even year-to-year. In my experience, I need to compare myself to how I was perhaps 5 years ago to notice any changes. Over that time things gradually get worse, but the body will adapt remarkably well. When doing something becomes difficult, you will find – quite naturally – another way to do it, and then life goes on as before, with little fuss. This becomes the norm, and the behavioural change may be missed. There will come a time when something becomes impossible, and that’s when help will be needed. Something as simple as unscrewing a bottle top can be impossible due to the lack of strength in the hands. In fact anything involving fine finger dexterity or strength will become increasingly difficult. Eventually, the fingers may become curled in, with no ability to straighten then except with external pressure. The only exception for me is the index fingers, which can be moved almost normally. However, with the other fingers curled, it can appear as though I’m always pointing at something.
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The biggest problem that I have experienced is one that’s not noted in much of the literature, but I’m sure it is down to CMT, and that is the loss of balance. As the muscles in the ankle deteriorate, it becomes increasingly difficult to judge the angle the ankle is at. This has a profound affect on your balance when standing still. Without the ability to make the small adjustments in the ankle, needed to stay upright, standing stationary and unaided is very difficult. But as suggested above, coping mechanisms are developed. The first is the bending of the knees when standing. As the muscles in the upper legs are not affected, the angle the knee joint is at can be judged relatively easily and balance maintained. This can lead to a strange stance that is tiring. A more common way of dealing with the balance problem is to just hold onto something. Looking back, I have been doing this for years without realising.
I believe one of the most important steps that can be taken for someone with this condition is to have well lit areas. With the balance issue described above, an important aid is having well defined horizontal or vertical lines. I have found that this visual clue is needed to maintain balance; I have real difficulties if the lights in a dark room are turned off, balance being lost almost immediately. This does cause some problems if travelling by boat. Whilst there are plenty of horizontal lines in the cabins, they do not remain so with even a gentle rolling when at sea!
For anyone who has CMT, it is important to understand that it is not the end of things. You may never be a professional footballer, or tap-dancer, but it does not stop you from doing most things. If you maintain regular exercise, and a good diet, then the effects can be slowed. However, it is a condition that will always be there, and how it affects you may be more down to you as an individual. Don’t let it worry you or let it get on top of you. Seek medical advice and find out as much as you can.
And don’t forget to enjoy life.
If you wish to find out more, please see the links below.
- Charcot-Marie-Tooth Association - CMTA
- CMT United Kingdom - [1]Home
CMT UK - Charcot-Marie-Tooth Disease , UK Charity
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Peggy
Thanks for your comments.
Not sure what to say about the hand brakes. I've had foot splints since my early 20s, so have driven with them for a long time. I was getting to the point where I didn't have enough fine control of the clutch, so now I drive an automatic.* My car isn't modified, so I can't give any advice about handbrakes. Have you tried the 2 cmt links above, perhaps they can give you some advice.
I wrote the article to try and spread the word about CMT - perhaps you could write one too? I would certainly be interested in reading another's experience.
Let me know how it goes
Paul
* For those without cmt, let me explain about the clutch. A foot splint holds the foot at right angles to the leg - great for walking, but not for driving. Most people use a car clutch by mainly moving the ankle. With a foot splint, you need to move your whole leg - i.e. lift it up, put your foot on the clutch pedal, and push down with the leg. Now imagine a hill start, in rush hour traffic and controling the clutch just with your leg!
I see. At present you would type with just those two fingers, and do you think you will be able to continue doing that? I think however that there are programs that let you dictate a text to be typed by a computer, and the results are acceptable.
And cooking? And making your bed? My COPD friend attaches her sheet and blankets to 3 legs of her bed, two at the bottom and one at the top, to prevent things from sliding.
I too siffer from CMT.
I am 26 and have had it from birth.
I too was mocked at school, and i did not take part in sports at school as by 11 it was diagnosed and i was excused as i was at risk of injury to myself and others.
I have adapted very well considering my recent decline in mobility. having said that I still cycle 4 miles a day to and from work and keep a 9 to 5 job.
I too have balanceing issues, and have noticed myself holding onto objects and when out in pubs/clubs its worse.
but i try to lead as normal a life as possible, and have some VERY supportive friends!
Hello my name is Glenn I am a 30 year old man I live in Alabama USA, I have CMT disease as well it is a rare type called Roussy Levy Syndrome. this means that as well as having all the problems of CMT I also have serious hands shaking like you would excpect from parkinsons disease.
I am adopted with no idea of family history when I was 3 I started walking with difficulty and I had speech problems. at the age of five I had healcord surgery becuase I walked tip toed. All through school I had to be in special education for learning disability which seem to make math much more difficult for me. I did graduate from school with a regular degree and I went to collage and earned a 2 year business degree I also went to a computer school to become a Computer technician.
I spent most of my life being misdiognossed by doctors they said I have Cerebral Palsy. when I was 13 I started having severe pain in my feet and legs. This was in 1995 and the idea of genetic testing was unheard of. the test was an amount of electriciy going though the nerves and timming how long it takes to go from one end to another. this test is still done today to judge if the disease is worsing.
When I turned 25 I started having severe pain in my arms and legs my toes curl over,my feet bones become deformed as well as ankles. I also started having much more balance problems and hip pain but the most sad part is I started having my hands lose strength and shake real bad.
I was also teased and made fun of. I wore braces on my legs and always got called Forest Gump. I tried to play sports with children but I just couldent. I had trouble catching the ball and I couldent run very well. I had a special PE(physical education)class and a normal PE class. the other kids in the normal class always made fun of me and some kids would try to trip me or push me down.I never had anyone with this same disease that I could talk to and I felt real lonely it is always hard for kids with disabilities to grow up and the emotional scars run deep.
Today I am 30 my doctor has been able to determin that I did not have cerebral palsy but simply CMT disease I have almost no motor skills at all my hands always shake, my legs and feet many times have no feeling I cant tell tempature with my legs feet or hands. I have come to find that pain is just part of my life pain is allthe time. I had been demoted from my job continuously until I had to quit becuase I just cant do my job. My doctor says I cant make sustainable income due to my disability so I am going to be filing for disability benifits. I am not happy to do so I presued education and training to find work to match my skill set but as the disability advanced it just became too much and my doctors all say the disease has become more than anyone could realisticly keep a job.
It is really hard for me, growing up was a nightmare trying to make friends was never easy at all. As a child I prayed every morning before school that I would not trip,fall,Get made fun of or picked last. Childhood was hard but in my mind I made big plans of how I would make my adult life and career really worth it only to find out it would just get worse. I am single I always wanted a son but with a 50% chance of passing on the disease I have chosen I cant have kids, I cant take that chance of them having these problems. since the disease is more agressive for me the genetisist has been able to speculate my odds ar higher than 50%.
Girlfriends have been few and far between, this disease has really hit my selfesteem hard. My disability is pronounced enough that my limp is seen before they get to know me. being on government welfare it feels hard to offer a lot.
I dont want people to think I am just self-peity or negitive I struggled to not be depressed but it is hard and life has been disappointing but not all bad. I have friends and I live at home with my folks whom are well off enough to help me out and have provided a caring support system. I always wanted to be a historian but chose not to becuase of lack of job oppertunity well now that I am not working I am studying Ancient History like I always wanted. I have also been writing a book, It is a horror story another passion of mine. well I hope I can shed some light of how CMT disease can effect people if you have questions please let me know and thank you.
I am a 43 year old male diagnosed with CMT at age 14. It really effected me in athletics. I was always a pretty fast runner, had good motor skills, and fairly athletic. That all changed as I reached Jr. High, I noticed I could no longer keep up with friends on the football field, my ankles and feet had noticibly turned in and my arches were very high, friends said that it looked as if I was running on the outside of my feet. lol, becuase I was. My hands began to shake, little things that were easy now become tasking. I had tendon transfer surgery when I was 35, but notice that my heels and toes are starting to curl inward again, my hands are cramping up, my feet are always cold and itchy to the point where I can only warm them in hot water. My knees ache constantly becuase when I walk my knee joints turn awkwardly. I am seriously thinking about what my future will be like. And am contimplating going about getting signed up for disabillity benefits, or at least starting the paper trail for the future. I work as a probation officer but not sure how long I can keep doing the work.
Anyone out there in a similar situation? Have you received benifits? Should I wait as long as possible to get my ssi benefits? Just weighing my options.
HAI..
Im 24 yrs old diagnosed as Roussy levy syndrome,from birth itself.
I have CMT1-A along with 5 other family members. My sister passed away from CMT with no other complications, and I most likely will too. CMT also affects breathing, but yet it is seldom mentioned. I try to eat right, exercise, and focus on the good things in life. It is, what it is.
Thanks for that comment ilovewater
Sorry to hear about your sister. I had no idea CMT could prove fatal, although I suppose it can affect the muscles controlling the lungs. Regular exercise is important as well as a good diet. And above all enjoy life.
hi every one my name is shirley i was told my son has cmt 12 mounths ago its affecting his hands he is a great hurler but cant hurl anymore he is playing football now he is 17 years old
I want to encourage all of you to check out Bernadette Scardizio on facebook and youtube she is a dynamic woman with cmt who is trying to raise awareness for research and treatment. Also on facebook if you put in charcot a page will show and you can become part of that community. We are not alone and there is nothing like talking to other folks in the same boat. It helps me and I have been dealing with this my whole life 50+. God Bless
Peggy 2 years ago
Paul, What an encouraging article.
I am 55 years old with CMT. I have had three ankle reconstructions and hammer toes straitened. I am a registered nurse and have been working for 35 years in a family birthplace.
Just in the past few years my hands have become painful and difficult to use. My legs and feet are at the point that the doctor wants me to consider having my car equipped with hand brakes (I wear braces on both legs). If you have any advise on hand brakes, I would appreciate hearing it.
Thanks so much ,
God Bless,
Peggy