Category Archives: personal stories

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

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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

Taking a Break

As sole caregiver for my mom and step-dad, I took a much needed break from CMT to help look into assisted living facilities for my step-father, in between visiting doctors, pharmacies and grocery shopping. We’re exploring ways to finance the $12,000 per month cost of assisted living, and trying to find out more about obtaining home health care, in the mean time. Continue reading

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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

A Race For The Brace by guest blogger Amy

As a child I always knew I was different, but never really knew anything was wrong. I was always the last one picked in gym class, could never run a mile in the amount of time that is required to even pass gym. To this day I am sure that the teacher “fudged” my time just to get me out. Continue reading

Posted in AFO, Charcot-Marie-Tooth disease, CMT, CMTA, fundraiser, Fundraising, Health CMT, leg braces, neuromuscular disease, peripheral neuropathy, personal stories | Tagged , , , , , , , , , , | 6 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

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

PROFILES IN CMT Interview with Amy Gander

Amy’s mother worried something was wrong with her when she was just 3 years old. “My mother said I began throwing my right leg out when I was 3. My right leg would go out from under me, and my gait was off,” said Amy. Continue reading

Posted in AFO, Charcot-Marie-Tooth disease, CMT, CMTA, Health CMT, leg braces, Neurologist, neuromuscular disease, neurotoxic drugs, peripheral neuropathy, personal stories, physical therapist | Tagged , , , , , , , , , , , , | 4 Comments