Charcot-Marie-Tooth (Funny Name-Serious Disease)

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by Melinda Lang

How do you start your day? I begin most days by getting out of bed, taking a few steps and falling splat on my face. Then I crawl over to the dresser and struggle to pull myself up off the floor with my weakened, muscle wasted arms. After 47 years of wondering what’s wrong with me- why do I keep tripping over my own feet, spraining my ankles, and continue to get weaker and weaker?  Finally I have a diagnosis. I have CMT or Charcot-Marie-Tooth disease.

Melinda with friend Cheryl at ValleyCats fundraiser for the CMTA

Melinda with friend Cheryl at the ValleyCats fundraiser for the CMTA
http://www.cmtausa.org

CMT, a genetic neuromuscular disorder ,  affects approximately 150,000 people in the US and perhaps up to 6 million worldwide.  Although CMT is the most commonly inherited peripheral neuropathy, many  are not aware they have it or have been misdiagnosed.

With this blog I’d like to change that.

If you have CMT, and would like to be interviewed for this blog please contact me, or leave a comment. Like this page The Time Is Now! End CMT and raise money for a cure!

What is CMT?

CMT, or Charcot-Marie-Tooth disease’s funny name comes from the three physicians who first described it in 1886: Jean-Martin Charcot and Pierre Marie of France, and Howard Henry Tooth of the United Kingdom.

CMT damages peripheral nerves connecting the brain and spinal cord to muscles and sensory organs. This nerve damage, or neuropathy, leads to muscle weakness and wasting, mostly in the lower legs, the feet, forearms and hands.

Other symptoms include loss of sensation in the feet, lower legs, hands and forearms; loss of balance; muscle cramps and contractures; and scoliosis or curvature of the spine. The loss of nerve function is often accompanied by tingling and burning sensations in the hands and feet, sometimes causing severe neuropathic pain.

Although weak ankles and foot deformities such as foot drop, hammertoes and high arches are symptomatic of CMT, this rare neurological disorder often goes unnoticed until lower-leg weakness becomes pronounced.

What is CMT? by Melinda Lang

Read More: Times Union, LiveSmart article by Melinda Lang

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Although symptoms appeared early in my life,  frequently spraining my ankles and falling, my diagnosis of Charcot-Marie-Tooth disease was not confirmed until my late forties. After my neurologist ruled out a number of possibilities, I searched online for an answer. Based on my symptoms: tripping over my feet and falling, weakness in my legs, numbness in my hands and feet, I asked to be tested for CMT1A. A genetic blood test confirmed the diagnosis.

Soon After being diagnosed with CMT, working as a pharmacist became increasingly difficult. My hands  became too weak to open even the easy off caps and my falling seemed to alarm the customers. I also became easily fatigued standing for hours and could not work the required overtime. After trying various types of pharmacy; mail service, infusion and a nursing home pharmacy, I felt forced to retire.

To keep busy I volunteered with the American Foundation for Suicide Prevention and Soldiers’ Angels. Then in April 2010, I started a support group to help others with CMT.  With help from the group, we compiled a list of CMT knowledgeable practitioners, along with recommended shoe store and pharmacies. Our group shares information and resources, and invite guest speakers to our meetings.  We also provide up to date information on the promising research being done by the CMTA. With their STAR (Strategy to Accelerate Research) initiative they hope to have a treatment within 2 to 4 years.

https://secure.charcot-marie-tooth.org/Donate_STAR.php

http://help4cmt.com/articles/?id=72&pn=cmt-awareness-melinda-lang-helps-the-cause

Upstate NY CMT Support & Action Group: CMT Support & Action group-Upstate NY
The Upstate NY CMT Support & Action Group was started in April 2010 to offer support, resources and information for those living with CMT. Also, to let others know about the CMTA’s promising research initiative- STAR™ (Strategy to Accelerate Research). We are action-oriented (community awareness, education, fundraising).

Am I physically challenged, incapacitated, disabled or just broken?

I want to walk like you do

I want to walk like you doWhen a representative of the Charcot-Marie-Tooth Association visited our support group, he said, “Whenever I speak to CMT groups, I ask how many think of themselves as disabled.” He finds very few raise their hand. He went on to say, “If we can’t button our shirts, we just buy a button hook. If we can’t open jars, we buy special jar openers.” He indicated people with CMT just adapt. Further, he believes CMT’ers don’t consider themselves as disabled.  So, then when he asked our group,”Does anyone here ever think of themselves as disabled?” As expected, no one raised their hand. However, I have to admit I was too afraid to respond truthfully.

Whenever I lose my balance or trip over my own feet and fall, while sprawled on the ground, I feel disabled. When I cannot open things, especially those items labeled “easy open, tear here,” I feel somewhat challenged. When I find it impossible to keep up with my husband, who walks quickly, I feel disabled. Worse yet, when I feel like I’m holding up my friends, due to my leisurely pace, I feel lame.

However, what bothers me the most is when people swear at me, because apparently I am in their way moving too slowly. And yes this makes my feel disabled, but more so angry. When I lose my balance or stumble, I worry people may think I am drunk. I prefer they realize I am physically challenged. To me, being disabled just means that I am no longer capable of doing what I used to be able to do. To me, disabled is not a shameful word. Disabled is my reality. Next time, when asked I will raise my hand.

ducklings

These ducklings triumphantly clambered up the steps, after several attempts, similar to the way CMT’ers struggle to climb stairs.

Yes, that hurts!

The medical community tends to downplay the extent of pain associated with CMT. Some doctors may dismiss their patients complaints about pain, or tell patients their pain is not from CMT. Yet, many people with CMT experience similar neuropathic pain. We need to let the medical community know about our pain and urge that more research be done to effectively treat CMT pain.

I have CMT1A, and as my condition worsens so does my pain. Almost daily, I experience nerve pain, which starts below my fingers and extends up my forearm. It feels like a buzzing pain. I first noticed this pain after a long drive. Then my hands and forearm became numb and tingly, making it difficult to grasp the steering wheel. Now, this pain begins after a short 15 minute drive.  Additionally this pain, numbness and tingling kicks in when typing on the computer, gardening or chopping vegetables. Now, that I think about it, my hands pretty much hurt most of the time. So now, I carry Lidoderm patches and naproxen in my purse, as I have found these somewhat effective in relieving the pain.

Similarly, I develop tingling, and burning pain in my feet to the point that it is difficult to become comfortable enough to fall asleep. Many nights I have to kick the covers off, even when it’s freezing, because the weight of the covers aggravates my neuropathy.

I also frequently get painful cramps whenever I try to exercise. My physical therapist is helpful in stretching the affected muscle to relieve the cramping, but this is more difficult to manage at home by myself.  In addition, my hands frequently cramp up and become stuck and unusable.  However, I enjoyed my first pool therapy today without any muscle cramps.

Though, the worst pain I have ever experienced occurs whenever my hands or feet become really cold. This pain is excruciating and takes some time to subside even after my hands are warmed up. Once cold, my fingers are useless and just collapse.  Therefore, I wear fingerless gloves in the house during the winter. Because, although I’m warm enough in my sweater, my hands still hurt from the cold.

Moreover, many days I become afflicted with aching pain in my lower back, hips and knees due to my awkward, off-kilter gait. Occasionally, out of nowhere a stabbing pain in my ankle stops me in my tracks. Luckily, my neurologist asks about my pain and offers suggestions, and prescriptions to help.

Sharing the Challenges of CMT with Future Physical Therapists

Physiotherapie

by Melinda Lang

Every year, for the last 3 years, I have been invited to speak to physical therapy students at a local college about living with CMT.

I met the college professor, Diane, while completing a six-week course for certification as a Health Peer Leader, to assist seniors coping with chronic health conditions. Diane invited me to participate in her class at Sage college to discuss the psychosocial aspects of loss and grieving with chronic health conditions.

Image via Wikipedia

On my first visit, the other guests included a women with MS and a young mother, who had lost her baby to Sids. I felt out-of-place, as if their grief was far more to deal with than coping with CMT. On the other hand, I was devastated when diagnosed with CMT1A, worried about the future. Also, I had been losing my balance, struggling to climb stairs, and had lost significant hand function.

This year, my discussion group included a women, who after suffering numerous strokes followed by brain surgeries, required a wheel chair and spoke with great difficulty. Although I need leg braces, walk with a cane, and frequently fall, in comparison my level of impairment did not seem as serious. So, at first I felt uncomfortable talking about the challenges of living with CMT.

However, the future physical therapists showed a lot of interest in learning about CMT, a disorder they never heard of. The students, always polite and compassionate, asked intelligent questions, giving me a chance to truthfully describe my degenerating condition. On the contrary, with family and friends, I feel the need to pretend that I am fine.

In addition, the professor invited me to participate in their lab as a mock patient. During the lab, the students performed some of the same tests my neurologist administers. One student checked my range of motion and loss of sensation to hot and cold. Another attempted to locate my nonexistent reflexes. Finally, a third student clutched a belt wrapped around my waist, while I attempted some high-stepping across the floor.

Conversing with the students has been very rewarding, knowing an entire class of physical therapists now understand how to help people with CMT. I encourage anyone, interested in sharing their experience, to contact a local college and offer to speak with students or participate in a PT lab.

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66 Responses to Charcot-Marie-Tooth (Funny Name-Serious Disease)

  1. Golda says:

    I like the valuable info you provide on cmtnyus.wordpress.com . I will bookmark your blog and check again here regularly. I’m quite sure I will learn lots of new stuff right here! Best of luck for the next! and Happy New Year!

    Like

  2. Very nice post. I just stumbled upon your blog and wished to say that I
    have really enjoyed browsing your blog posts. In any case I will be subscribing to
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    Like

  3. Eldon says:

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    Like

  4. Brenda says:

    Wow… I thought I was reading about myself when reading your blog … I am going to be 41 in May, I have been having a horrible time for two years with pain and weakness sometimes paralyzing pain or spasms…and being passed around like a hot potato everyone having a different opinion… and then finally on March 21st, I got my genetics back confirming CMT … but my story of the last two years of my life unfold almost exactly as yours does above. Thank you for helping crate awareness.

    Like

    • Brenda says:

      ooops…. typo sorry!! thank you for helping create awareness of CMT is what I meant to type.

      Like

    • cmtny says:

      Hi Brenda, Sorry you’ve been through such a terrible time on your journey for a diagnosis. Half the battle is finding the cause of your symptoms, then getting your family & friends & doctors to understand that, yes, this pain, weakness and fatigue are real. Everyone, who calls about joining our support group, is just so relieved to finally meet someone else who has CMT, & understands what they’re going through. Thanks for sharing your story.
      Melinda

      Like

  5. John says:

    I was wondering if anyone else has learning disabilities as well as depression and anxiety as well as CMT. I was born with CMT had a clubbed foot fixed after getting diagnosed at 15 with CMT. I wish I wouldn’t of had it done to be honest it hurts all the freaking time and doesn’t flex now.
    I did manage go get a GED.. but have only had minimum wage jobs till I couldn’t work anymore, torn rotator cuffs after falling at work caused this issue. I am just soo tired of being alive. All my friends have moved on with their lifes, I was just a weight that dragged them down. I always pretend to be happy but anyone who really knows me, knows how much I hate myself. I can’t do ANYTHING right.. even using a knife.. I cut myself every time.. dang hands anyway. It sucks so bad not being able to work.. it was the only thing that helped keep me sane. I worked from age 16-27. Now I have to scratch by on SSD.. 690 a month.. I can’t afford rent yet alone utilites. My dad is kind enough to let me move home I still pay rent 350 a month and buy my own food. So that leaves me 100 for medical and ANYTHING else I need. If any of you great people can help point me towards some hope in life I would appreciate it.

    Like

    • cmtny says:

      John, Many of us with CMT get anxious and depressed especially when we get weaker or lose more function in our hands. I’m sorry you’re having such a difficult time. It must be terrible with your foot hurting all of the time. Is there another DR, who may be able to help you with that. Try reaching out to your friends let them know what your going through they may surprise you, many people want to help.

      The CMTA has a facebook online community where you can talk with others with CMT and we all help each other visit here:
      https://www.facebook.com/groups/12765525026/10151507119820027/?notif_t=group_activity

      Also there is hope! Dr.s and scientists are making great progress with the research working with the NIH and expect to have a treatment within the foreseeable future.

      You may have a CMT support group near you where you can meet others with CMT so you won’t feel so alone and overwhelmed.
      check here for a group near you: http://www.cmtausa.org/index.php?option=com_community&view=groups&categoryid=9&Itemid=15

      Please let me know if any of this is helpful.

      Like

      • Trev says:

        Didn’t know about the facebook group as I never go on facebook anymore.
        Yeah there is nothing that any of the docs who will take Medicare can do for my foot. I refuse to take pain pills as all the ones I tried make me nauseous and dizzy.
        I never had much use of my hands they never did what I told them to.. shake all the time and now I can’t even open a pre tear package hahaha 🙂 I am not the only one in family with that issue,have a uncle that is almost the same effected with this junk 🙂
        He isn’t much help as he is a drug addict and is in prison last I heard.
        I will try the support group thing. I honestly have never done support groups.
        I have zero friends, as the ones I had growing up have moved away or are dead now.
        I suck at making new friends.. I always feel so awkward and stupid, and or worthless around people.

        Like

      • cmtny says:

        John & Trev There’s a great discussion group on http://www.cmtausa.org
        which you can join for free for great advice in dealing with difficulties we face wit CMT http://cmtausa.org/index.php?option=com_community&view=groups&task=viewgroup&groupid=201&Itemid=15

        Like

      • John says:

        No there aren’t any disability offices or advocacy groups where I live. I did find health and welfare’s advice of doing manual labor to be insane though. I can barely walk anymore without falling and they want me lifting and carrying heavy things all day.. nice.
        State industrial told me to work for a call center that has higher turn over than any other job in this area. I applied got told they went with someone else.. Heck even walmart wouldn’t hire me. Medicare only pays for 3 visits a year to physical therapy I was told by my physical therapist, that helped with my torn rotators work injury.. so it doesn’t help much.

        Thanks for listening, and the suggestions. 🙂 Its such a relief to just be able to be open with and communicate about things.

        Like

      • cmtny says:

        John,
        Maybe this site for job seekers with disabilities can help you: http://myemploymentoptions.com/for-job-seekers/

        Melinda

        Like

      • John says:

        Thanks the site looks a bit shady… but I will give it a shot as long as they don’t ask for money or my ss number lol

        Like

    • Jess says:

      John, I am 20 and was diagnosed at 5 with CMT. I was diagnosed at 13 with depression and social anxiety disorder. I don’t believe CMT causes learning disorders, but I definetly noticed in my past that CMT made me not want to go to school because of the fear of being bullied, which caused the anxiety and depression. I found that starting college definetly helped my depression because not being able to work and sitting at home did not help my moods. Also, volunteering for short hours at places helped.

      Like

      • cmtny says:

        Jess, Thanks for writing. I too find volunteering and taking classes helps beat depression. Anything that can keep your mind busy, so you don’t have time to worry works well. Reading, listening to music, talking to friends, going to a comedy show, or going for a walk & enjoying nature. Whatever you enjoy, do more of it!

        Like

      • John says:

        Depression and social anxiety disorder I thought came hand in hand with CMT> I could be wrong but I have never meet anyone who it who doesn’t have both. Thanks for your response, I dropped out of high school due to being physically and mentally assaulted on a daily basis. It started in junior high.. I became suicidal never knowing when the next assault was coming in high school and dropped out. I did work for fast food job for 7 years.. 20-27 which is how I get the low SSDI payment that I do now.. I hear I would of gotten more having never worked. lol
        I do volunteer at food bank 10 hours a week. Yes it helps a bit.. but to be honest I still feel worthless.

        Like

    • John says:

      cmtny I joined those sites you recommended one went down and is changing their address so I got a email today lol.
      I guess I have more issues than you can shake a stick at besides CMT. I just thought it was all caused by CMT. As alot of my extended family have the same issues, and all also have CMT. I would so love to just have a job again. But now just standing is so hard.. those helios would be awesome but are so far out of any possible hope of getting. LFO’s don’t work and actually got me to where I am now.. falling all the time and not being able to stand very well. They caused extreme muscle atrophy… I fell before but not anywhere near the issues I have now.

      Like

      • cmtny says:

        Hi John, So sorry you’re having such a difficult time because of your CMT. I know how difficult it is too have to stand for long periods with CMT legs. That is part of the reason I had to give up my career as a pharmacist. Also, my hands don’t work well enough. Is there some sort of disability office or advocacy group near where you live, which could help you find a job where you can comfortably sit. Have you tried working with a physical therapist and an occupational therapist? They have been very helpful for me. Hopefully you have insurance which would help pay for that?

        Yes, the CMTA was just updating & redoing there website just as I was sending you there.

        Like

  6. Amy says:

    So glad to find your blog, I have one as well. Its nice to find others that understand what we are going though on a day to day basis. If you want to check it out here it is 🙂

    http://www.aanglin.com

    Like

    • cmtny says:

      So glad I found your blog. Great way to support your daughter. If you’d like to be a guest blogger and contribute info about your fundraising efforts for your daughters braces, I’d be happy to post it here.

      Like

      • Amy says:

        It’s actually me that needs them, so far we don’t notice she has any symptoms.I would LOVE to be a guest blogger and give you any info you need 🙂

        My daughter is a great support system from me and I felt the need to write about how helpful and conciderate she is of my needs on the “tuff” days!!

        Like

      • cmtny says:

        Whoops. Just found some time to read more of your blog. Love your “Hello World” which really shows the world what it’s like to live with CMT.

        Like

  7. Susan says:

    Hi Elliot, thanks for your kind comment on http://howtorecoverfromdepression.blogspot.com/.
    I am a pen pal of Melinda, a co-author of your site. It is a pleasure to get to know kind hearted people like you and Melinda. I wish great success for your work.

    Please log back to my site and refer friends to my site for further peers support on depression. I update contents all the time and more resources will be added continually.

    🙂 Susan

    Like

  8. Susan says:

    Very well presented here Melinda. Keep up the good work!
    Susan K., Ma.

    Like

  9. jane278 says:

    I have my own blog about CMT and have just found yours so I am now following.

    Like

    • cmtny says:

      Hi Jane, Thanks for stopping by. I just tried again to check out your blog , but the link did not get me there. Feel free to post a link to your CMT blog again please.

      Like

    • cmtny says:

      Jane I was just looking through old comments on my CMT blog and tried to click on your link to check out your blog, but it didn’t work. Are you still blogging?
      Melinda

      Like

      • cmtny says:

        Hi Jane, I took a break from blogging for a bit after my mom moved in and I was having some health difficulties, so went offline. However, I am blogging again & still add posts when I find the time. Thanks for visiting.

        Like

  10. Rose Sempris says:

    If enough people vote this week Chase bank will donate $25000.00 to help find a cure for CMT. Please pass the message to all your friends and family.
    https://apps.facebook.com/chasecommunitygiving/charity/view/ein/22-2480896

    Like

  11. Terra Lanka says:

    Very nice post. I just stumbled upon your blog and wished to say that I have really enjoyed browsing your blog posts. After all I’ll be subscribing to your rss feed and I hope you write again very soon!

    Like

  12. Corey Staff says:

    Very nice post. I just stumbled upon your weblog and wished to say that I have really enjoyed surfing around your blog posts. In any case I’ll be subscribing to your feed and I hope you write again very soon!

    Like

  13. I like the helpful information you provide in your articles. I’ll bookmark your weblog and check again here frequently. I’m quite certain I will learn many new stuff right here! Best of luck for the next!

    Like

  14. cmtny says:

    Thanks for the comments. I modified the theme with my own picture taken at Bearskin Wharf in Rockport, Ma.

    Like

  15. Keep working ,great job!

    Like

  16. Lou Vratello says:

    I like the helpful info you provide in your articles. I¡¦ll bookmark your blog and check again here regularly. I’m quite sure I¡¦ll learn a lot of new stuff right here! Best of luck for the next!

    Like

  17. Hello! I’ve been reading your blog for a long time now and finally got the bravery to go ahead and give you a shout out from Huffman Tx! Just wanted to say keep up the excellent work!

    Like

  18. Pretty great post. I just stumbled upon your weblog and wanted to mention that I’ve truly loved surfing around your weblog posts. In any case I’ll be subscribing in your rss feed and I am hoping you write again soon!

    Like

  19. Hey There. I found your blog using msn. This is an extremely well written article. I will be sure to bookmark it and come back to read more of Living Well with CMT (Charcot-Marie-Tooth) | Meeting challenges of a rare neuromuscular disorder. . Thanks for the post. I will definitely return.

    Like

  20. acne remedies
    Pretty great post. I simply stumbled upon your weblog and wished to say that I’ve truly enjoyed surfing around your weblog posts. After all I’ll be subscribing for your rss feed and I hope you write again soon!

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  21. Nimesh O says:

    Hi Melinda,
    Just wanted to say the note on “Do you see yourself as disabled” was beautifully written. It captured my feelings exactly. Although Id rather keep my hand down if asked the question, it is true that it is my reality and I shouldnt hide it. I too will raise my hand if asked again.
    Thank you!

    Nim

    Like

  22. shirlry says:

    hi im shirley i was told last year my son have cmt type 2 d genicts came back negitive doc said its still type2 but not d im so confused his doc never heard of it eather

    Like

    • Melinda Lang says:

      Hi Shirley,
      I’m sorry about your son and the confusion about the diagnosis. Perhaps if you ask his doctor to read more information about CMT at http://www.cmtausa.org he may find this helpful to get your son the correct treatment he needs.

      Like

      • shirley sheehan says:

        thanks melinda my son say another doctor and she said he have rpogressive musculer atrophy his hands are affected hes a great guy he just 18 years old now

        Like

  23. Shiranthi Kodagoda Peiris says:

    very Informative information to which my son too could well relate. loosing his balance and falling is the hardest encounter for him. Looking forward to more useful information.

    Like

    • Melinda Lang says:

      I’m sorry to hear of your son’s difficulty. For me, leg braces and walking with a cane helps to keep me from falling, and physical therapy to strengthen core muscles can also help with balance issues.

      Like

  24. VemaRemNbat says:

    Heya i’m for the first time here. I came across this board and I find It really useful & it helped me out a lot. I hope to give something back and aid others like you aided me.
    schody granitowe

    Like

  25. abbey says:

    Hey, I was diagnosed around 4 months ago and not much has been explained, I know what it is but I haven’t talked to anyone since the moment I left the hospital that day, I can relate to your post so much and will continue to read on. Thank you.

    Like

    • Melinda Lang says:

      Hi Abbey,
      It’s very difficult being diagnosed with CMT, especially since we’ve never heard of it. Then when we try to tell someone what we have, of course they’ve never heard of it either. Hope you find some of this information to be helpful.

      Like

  26. simnpledave says:

    Great blog post. Keep up the hard work.

    Like

  27. Through this website, Melinda Lang has provided an invaluable resource. The well written, informative articles provide vital information, but also a great deal of emotional support. Anyone suffering from CMT who visits this sight comes away with the comforting knowledge that he or she is not alone and that work is being done to battle the disease.

    Like

  28. Elizabeth says:

    Love the blog Melinda…..great resource!

    Like

  29. Great job, Melinda! Let’s get the word out and help people to know about and understand CMT.

    Like

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