Tag Archives: Neuromuscular disease

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

Advertisements
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

Rare Diseases Deserve Access to Accelerated Approval – Call Congress TODAY!

Rare Diseases Deserve Access to Accelerated Approval – Call Congress TODAY!
http://www.congressweb.com
The FDA recently issued a draft guidance on the Expedited Approval Programs which they say fulfills the FDASIA mandate on Accelerated Approval for Rare Diseases, however the guidance does not address specific issues related to rare disease drug development as required by FDASIA. This is unacceptable! Continue reading

Posted in Charcot-Marie-Tooth disease | Tagged , , , , , , , , , , , , , | Leave a comment

Meet fellow CMT blogger, Ashley Pomykala

Meet The Blogger Behind Parsimonious Pash Interview by Melinda Lang How did you decide to become a blogger? Honestly this is probably one of the toughest questions you could ask.  I tried my way with a couple of blogs before … Continue reading

Posted in Charcot-Marie-Tooth disease, CMT, CMTA, Health CMT, leg braces, neuromuscular disease, peripheral neuropathy, personal stories | Tagged , , , , , , , , , , | 3 Comments

We have all lost a wonderful amazing friend.

Hold Your Loved Ones Close

Time speeds by, sometimes in a flash. Before you know it the years have passed; the children you’ve held in your arms are cradling you now, in theirs…roles are reversed, and there is never enough time. Never, EVER enough time. By Christine A. Hook Continue reading

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

Proclamations & Resolutions Approved For CMT Awareness Month

After months of writing letters, sending emails and visiting with NY state and local representatives, we now have received the City of Albany, NY Office of the Mayor, Gerald Jennings, Proclamation encouraging residents to join in observance of Charcot-Marie-Tooth Neuromuscular … Continue reading

Posted in Charcot-Marie-Tooth disease, Health CMT, neuromuscular disease, peripheral neuropathy | Tagged , , , , | 3 Comments

Raise Money For CMT research with iGive

Raise money, just by shopping online at stores that you know and love. Just click, sign up for free and have fun shopping! Raise money for the Charcot-Marie-Tooth Association when you search or shop online! Raise a penny (or more!) … Continue reading

Posted in Charcot-Marie-Tooth disease, neuromuscular disease, peripheral neuropathy | Tagged , , | Leave a comment