Do you start your day by falling on your face?

Posted on November 12, 2012 by cmtny
 CMTA Zazzle store raise money for CMT
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 and spraining my ankles? Why can’t I  get up out of a chair without my husband grabbing me by my belt loop to pull me up? Why do I need to crawl up the stairs if there’s no hand rails? Why am I getting worse?

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
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!

This entry was posted in AFO, Art de Cure, Charcot-Marie-Tooth disease, CMT, CMTA, Health CMT, human clinical trials, leg braces, Neurologist, neuromuscular disease, neurotoxic drugs, peripheral neuropathy, personal stories, physical therapist, STAR, stem cell research and tagged , , , , , , , , , , . Bookmark the permalink.

2 Responses to Do you start your day by falling on your face?

  1. Pamela Finney says:
    November 18, 2012 at 11:25 pm

    I start my day praying I will get my rather large lifeless right foot up onto the bottom of my 3 wheel scooter before my bladder decides the weakened muscles have held Long enough for this particuluar morning and then the reality of I should have used my bucket instead of taking the chance of making it on time this morning. Last year this wasn’t such an issue but that’s the beauty of this disease….we never know what new plateaus we will have to adjust to within the next 365 days. I Thank God every day I have left what I have and really do stay fairly upbeat even though it might not sound that way! Reality is reality and I have learned in my 47 years that you appreciate what you have while you have it because it literally could be gone in a blink of an eye! I was diagnosed much earlier in life with CMT than seems like with most on this forum at 18 months but have never met another face to face. Someday I hope…….

    Like

    Reply
    • cmtny says:
      November 19, 2012 at 6:37 pm

      Hi Pamela, Thanks for writing. It amazes me when I learn that so many were diagnosed early. I love your upbeat attitude and try to focus on what I can do rather that what I have lost. My purpose in writing here, is to let people know some of what we deal with on a daily basis. If you would like to meet someone else with CMT, don’t know where you live, but if in the US, the CMTA has more than 50 support groups across the country.

      Like

      Reply

Leave a comment