Be True to Yourself–Living with Charcot-Marie-Tooth

If you’ve lived with CMT long enough, you’ll likely realize that there are things you can do and should not do to make life easier and not exacerbate your condition.

My CMT showed itself when I wasn’t yet a year old. That means I’ve lived almost 70 years with it. During those years I’ve learned a few things I’ll pass on:

Educate yourself – Early on in my journey with CMT, I went to a physiatrist who was badly disabled. He wasn’t very sympathetic and helped me toughen up and realize that I wasn’t the only person to ever have a neurological disease.  I had to learn to face it and live with it; to play the cards I was dealt at birth as best I can because there is no going back. He also said that people with a disorder like ours usually either learn all they can about it and become a lay expert on their disease or turn to religion and wait for a cure from God. I don’t know about the latter but I sure have educated myself as my CMT plays out. There is power in knowledge. Google has a neat little item called a Google Alert that let’s you search a topic and they’ll look for everything published on the internet for you. Type in Charcot-Marie-Tooth and you’ll see just what’s happening every day. It’ll pop up on your e–mail.

Get an education – Not the same as educating yourself about CMT. If you get a decent education, you’re more likely to not have to work with your hands, stand up all day or be required to walk miles every day in a huge factory.  Wearing yourself out doing something manual or physical that drains you can be avoided if you can use your brain instead.  And, no one says you can’t go back to school. I’ve been taking online courses for years from the State University of New York at Buffalo and just found out that, at my age, our local university doesn’t even charge tuition.

Know your CMT – And I mean your CMT type. I used to think it wasn’t important to know what type I had, but once I found out I had CMT Type 2A2 and set my google search to it, I learned that it affects the mitochondria which is the energy producer in the cell. Now, it’s clearer why I haven’t walked in 20 years, am losing my hand strength, why I can’t lose weight and why I tire so easily as I go into my 70s.  I’m still learning about CMT2A2 but would never have even glanced at it if I hadn’t had my CMT genetic makeup done. Knowing what type of CMT you have does have benefits even if they just help you understand what’s going on.

Get connected – There’s no reason that you have to feel alone with your CMT. There are hundreds of thousands of people around the world with some type of CMT. No matter where you live, there’s always someone, somewhere that you can talk to who has CMT. Online, there are many organizations and websites with CMT discussion forums. Do a fundraiser and CMT people seem to come out of the woodwork. Talk to your local muscular dystrophy chapter. They likely have CMT people registered with them. And, if you don’t mind everyone knowing that you have CMT, write a letter to the editor of your local paper looking for people with CMT to talk to. I did this once and ended up with 700 families in two countries all wanting to talk. This led to the formation of the former CMT Newsletter and now my CMT and Me blog on wordpress.

Minimize stress – There are all kinds of stress. If your marriage or your job is stressing you out, try to remedy the situation. Doing nothing won’t get you anywhere.  There is also what I call ‘doctor burnout.’ You can go from doctor to doctor ad infinitum and never really get anywhere. There is no cure for CMT and physicians can only look at symptoms and try to treat them. At some time you’re going to have to learn to live with what you’ve got. This doesn’t mean you have to stop searching for help for something that bothers you, but trying to make it all better isn’t going to happen.

Don’t overdo it – This is just my opinion but I think pushing yourself physically to achieve isn’t the way to go. I read about CMT people running marathons, cycling miles and climbing mountains and wonder how they feel afterwards.  And, are there any lasting effects from these overachiever activities?  We know that as CMT progresses we can lose movement. Why push that loss?  Push your brain instead. Run mental marathons. Your brain likely won’t atrophy with use.  Although surprise, surprise! The odd person with CMT 2A2 can have brain atrophy.

Look after yourself  – Ignoring your CMT and just getting on with life is one of the ways that some people deal with a CMT diagnosis. Everyone would love to just get on with it but it’s smart to keep your CMT in the back of your mind.  Always.  It might help you keep your weight down, say no to too much alcohol, forget the cigarettes and think twice before you quit school or have 10 children who could have CMT.

Don’t believe everything you’re told – Physicians can test you for CMT and you can have your genetic makeup done to find out what type you have, but no one can predict what your life with CMT will be like.  Having children, what you choose as a profession, the stressors you experience, everything you go through in life makes a difference as to how you deal with your CMT.  Your CMT can also plateau for years where there are no changes and then it starts again for what reason? It could be major stressors such as a death in the family, a divorce, a job that has become too stressful or just plain ageing.   When a healthcare professional predicts something for your life, (for me it was that I’d be dead by 12 and using a catheter by 50), if you believe it, it could become a self-fulfilling prophecy. But, if you believe in yourself, you’ll not take anyone’s prophecy as gospel. No one can predict what another person’s life will be like.

Keep the faith – Every time you lose some of your ability to CMT, you grieve.  You can no longer move your toes, you can’t feel the gas pedal under your foot, your thumb won’t move, you’re tripping more often, it’s harder to lift yourself off the toilet, you’ve gone up a dress size or two because you aren’t out there walking the dog like you used to. So many little things and they are all cause for grieving.  But, you’ll get over it.  The problem is there’s always another reason coming at you. We have to keep the faith and believe in ourselves. Believe that no matter what CMT throws at us, we can live with it.

Keep hope alive – I used to think that hope was for sissies, but I know now that I have to have hope to keep going. Hope keeps me wanting to get up in the morning. Hope that my CMT won’t take everything I need to help others or look after myself. Hope that I won’t have so much pain that I can’t see beyond it and hope that I can find solutions for what is happening as my CMT progresses. But, most of all, like most other people, hope that my life with CMT will not have been lived in vain.

These are just a few of my thoughts on CMT. CMT and I have been together for 70 years now and it doesn’t get easier, but I don’t hate it; I just take it as it comes and have faith that my brain will figure out a way to allow me to cope.  I wish the same for you.

Linda Crabtree founded and ran CMT International from 1984 until 2002. She worked with thousands of CMT families and draws her knowledge from past and present experiences. She has CMT2A2. Currently, Linda moderates a CMT yahoo forum CMTCAN.

Written by Linda Crabtree, CM, O.Ont., O.M.C., B.A., LL.D. (hon.) 

The information contained in this article is the opinion of the author and does not necessarily reflect the official views of the Hereditary Neuropathy Foundation or the Centers for Disease Control and Prevention. Nothing in this article should be construed as, nor is intended to be used for, medical diagnosis or treatment. This information should not be used in place of the advice of your physician or other qualified health care provider. Should you have any health care related questions, please call or see your physician or other qualified health care provider promptly.