“What CMT Means To Me”

by Melinda Lang

CMT means sometimes I start my day by getting our of bed, tripping over my feet, and falling on my face.

CMT means to me that I found new friends after starting a local support group.

CMT means giving up my career as a pharmacist, because my hands don’t work and I cannot stand for long hours.

CMT means I can enjoy my “early retirement!”

CMT means I have to wear ugly braces and can’t find any shoes that fit, other than sneakers a size larger and wider than I used to need.

CMT means I have time to write articles to raise awareness of the signs and symptoms to help others get the proper diagnosis.

CMT means leg cramps and nerve pain in my arms and hands with excruciating pain when my hands or feet get really cold in the Winter.

CMT means overcoming my shyness to speak up and advocate for awareness and fundraising for a treatment and facilitating a support group.

CMT means that most of my dishes are chipped or cracked because I keep dropping them. I’m on my third coffeepot in 6 months. They don’t bounce very well.

CMT means I worry people will think I’m drunk because of my off kilter gait.

CMT means I worry about the future: will I be wheel chair bound; will I have more difficulty swallowing; will I be one of the few who develop breathing difficulties?

CMTA means Charcot-Marie-Tooth Association, which to me means HopeHope for a treatment!   Hope for a cure!

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Find out more here: www.cmtausa.org

Strategy to Accelerate ResearchDonate here: Donate for CMT Research

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This entry was posted in Charcot-Marie-Tooth disease, Health CMT, neuromuscular disease, peripheral neuropathy and tagged , , , , , . Bookmark the permalink.

4 Responses to “What CMT Means To Me”

  1. Pamela Finney says:

    Nice!! I wish you weren’t having to deal with CMT but on a selfish note it is refreshing for me whom has never met anyone else that has this disease to read that I am not alone in this fight! My husband and son threw me a 1,000,000th drop party 2 years ago complete with banners, balloons, a crown, a cake and gifts! I can so relate to alot of what said….I was diagnosed at 18 months with CMT and had my 1st surgery at 5. I am in a wheelchair since 1999 due to being down for a month with double pneumonia, lost what muscle control I had left. I also do have to wear a CPap to sleep but breath fine sitting up, i started using this after my left diaphragm decided to stay paralyzed in an up position out of the blue. within the last 2 years I have started playing the choking game as I refer to it where I will choke on taking in a breath or a drink of a beverage but never on food and not all the time just on occasion out of the blue. In spite of all this I have a great life-, different from others but very full and satisfying! I look at every day as a blessing and feel grateful to partake in it whatever may come. I am blessed with a wonderful family and friends that see me as Pam and will say quite often that they forget I am so called handicapped because they see through all my differences. Humor keeps me strong along with the understanding of how lucky I am as there are others in this world that suffer so much more than I. Every one on this earth has some cross to bear and this just happens to be mine! Thank you again for sharing your words and story! I would love to meet others that would know what it is we go through. Live, love, laugh……..Sincerely, Pamela Finney(Minnesota)

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    • Melinda Lang says:

      Pamela, Thanks for writing. You have an amazingly positive outlook. Having a wonderful family and friends makes all the difference in keeping us going. They must have excellent Drs. in Minnesota for you to be diagnosed so young. The CMTA has support groups where you can meet others with CMT and get a lot of helpful information. I don’t know if Chesaning, MI is near you, but one of the groups meet there. Here’s the link to see if there’s a group near you.
      http://www.cmtausa.org/index.php?option=com_community&view=groups&categoryid=9&
      Itemid=15
      Come back and visit and let us know how you’re doing. We need to hear from someone who sees the humor in dealing with CMT!

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  2. Melinda Lang says:

    Thanks Lenka. Trying to stay positive!

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  3. lenka says:

    Well said! I love the ‘early retirement’ :). I have the same story from teaching, not by choice of course. But always good to look at the half-full glass 🙂

    Best wishes!
    Lenka

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