Tag Archives: Conditions and Diseases

3rd Annual CYCLE 4 CMT

My good friend, Amy, has convinced me to get back on a bike again by joining her in participating in the 3rd annual CYCLE 4 CMT on August 28. Last year, I went to this event to support Amy, raise some money for CMT, and enjoy the party. Continue reading

Posted in Awareness Month, Charcot-Marie-Tooth disease, CMT, CMT Awareness Month, CMTA, fundraiser, Fundraising, neuromuscular disease, peripheral neuropathy | Tagged , , , , , , , , , , , , | Leave a comment

Flying Porta-Potties

Throughout my life I have found that I’ve wasted way too much time worrying about a lot of things that never happen. Now it seems that what I should have been worrying about, is getting done in by a flying Porta Potty. Continue reading

Posted in Charcot-Marie-Tooth disease, CMT, flying Porta-Potty, Health CMT, neuromuscular disease, peripheral neuropathy, personal stories | Tagged , , , , , , , , , | Leave a comment

CMT Awareness Month Challenge

We’ve all seen the ALS Awareness Bucket Campaign and how ALS successfully raised over $109 million, well now comes the CMT Awareness Challenge. I’ve been nominated for this challenge to write 3 things that I am grateful for relating to CMT, over the next 5 days.
I believe the point is to help people understand what it’s like to have CMT, and let them know where they can donate to find a treatment to stop the progression. Continue reading

Posted in AFO, ALS, Awareness Month, Charcot-Marie-Tooth disease, CMT, CMT Awareness Month, CMTA, Fundraising, Health CMT, leg braces, neuromuscular disease, peripheral neuropathy, personal stories, phrenic nerve | Tagged , , , , , , , , , , , , , , , , , , , , , , | Leave a comment

2013 RARE Champion of Hope Community Nominated Awards

The Tribute to Champions of Hope Gala is being held in Newport Beach, CA on September 21st and the Global Genes Project is looking for RARE Champions to be recognized for four special awards nominated by you! Nominations are being accepted April 1st through May 15th. Continue reading

Posted in Charcot-Marie-Tooth disease, Global Genes Project, Health CMT, neuromuscular disease, peripheral neuropathy, RARE Champion of Hope Community Awards, Rare disease day | Tagged , , , , , , , , , , , , | Leave a comment

Do you start your day by falling on your face?

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. Continue reading

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 | Tagged , , , , , , , , , , | 2 Comments

Profiles in CMT: Interview with Christine A. Hook

Christine A. Hook’s Interview with Melinda Lang

You recently received an award from the CMTA, tell us about your award and how you were nominated.

Yes, I recently received the National ‘I am a STAR’ award, for everything I have tried to do to raise awareness of CMT, and money for research…through the CMT blog, Grace Lines, I write, and the Art de Cure gallery I co-coordinate, which benefits the CMTA. My parents nominated me for the award, and I’m still shocked that the CMTA chose me. It’s a great honor! Continue reading

Posted in Art de Cure, Charcot-Marie-Tooth disease, CMT, CMTA, Health CMT, neuromuscular disease, peripheral neuropathy, personal stories, STAR | Tagged , , , , , , , | 6 Comments

Why Making Healthy Lifestyle Choices Can Help Reduce Hearing Loss

Hearing loss sometimes may seem inevitable, especially as we age. For example, according to the National Institute on Deafness and Other Communication Disorders, about 17 million adults in the United States report some form of hearing loss and almost 50 percent of adults ages 75 or older have hearing loss. Continue reading

Posted in Charcot-Marie-Tooth disease, Health CMT | Tagged , , , , , , , | 1 Comment

Wired For Sleep

For some time now, I have been feeling like I’m having difficulty breathing whenever I lie down to sleep. My first concern was that this may be from my CMT (Charcot-Marie-Tooth disorder). However, my doctor said, “What are the chances of you having a rare disease and also the rare incidence of breathing difficulties.” So, I postponed seeing a pulmonary specialist, thinking my doctor must be right; maybe it’s just stress. Continue reading

Posted in Charcot-Marie-Tooth disease, Health CMT, neuromuscular disease, peripheral neuropathy, sleep apnea, sleep study | Tagged , , , , , , , , , | 4 Comments

Upstate NY CMT exhibit at The American Pain Foundation community event

by Melinda Lang, Rph The APF together with Albany Medical Center presented a free community event “Getting the Help YOU Deserve for Chronic Pain,” at the Hilton Garden Inn in Troy, New York on Saturday, October 15. This free event, … Continue reading

Posted in American Pain Foundation, Charcot-Marie-Tooth disease, Health CMT | Tagged , , , , | Leave a comment

“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 … Continue reading

Posted in Charcot-Marie-Tooth disease, Health CMT, neuromuscular disease, peripheral neuropathy | Tagged , , , , , | 4 Comments