How knowing my father, another CMTer, has changed my life
Our relationship meant I never had to live with this disease in a vacuum
I’ve often looked to my father as an example. That’s been true in many contexts, but it also includes his living well as a person with Charcot-Marie-Tooth (CMT) disease.
From a young age, I’ve known that both my father and I have CMT. Throughout my childhood, I was neither aware of anyone else with CMT nor any disability advocacy organizations. So it was my father, whom I love and respect, who made CMT normal to me. Because of him, I wasn’t affected by the many silly narratives out there regarding folks with disabilities. My relationship with my father inoculated me from all that.
Thanks to my father, I believe that character is demonstrated by how a person loves and cares for others. I think that’s more foundational than other types of achievements, be they financial, professional, or academic. Love and caring are aspects of life that are untouchable by CMT or any disease, chronic condition, or disability. Everyone can find ways to practice them — and learn to accept them from others.
My father is one person whose life demonstrated that truth. I saw it in the way he spent his time and energy in service to friends, family, and members of his church community; he was always measured and careful with his communication, always trying his best to show respect.
Because of my father, I never felt that folks with CMT were incapable of success or that their lives were defined solely by their disease. Of course, at times I was frustrated by my weakness or clumsiness, but I generally felt they were hurdles I could manage. After all, I could see my father achieving a form of goodness while having CMT, so I felt CMT wouldn’t inhibit me, either — not if I didn’t let it. Thus, I had no paralyzing fear that CMT would diminish who I was.
A new awareness
I’ve recently realized that I’ve perhaps taken this aspect of my relationship with my father for granted. Having a positive example of someone living with CMT has had a profound impact on my upbringing and outlook. That’s not something all CMTers can say.
While I’d still like to see many improvements for folks with disabilities, I’m thankful that we’re lucky enough to live in a time when it’s possible to establish connections with members of the greater CMT community. We have some great CMT organizations, many with members who live in various parts of the world. I’ve established quite a few relationships with other CMTers by attending group meetings and conferences, through social media and video chats.
We’re in the last week of CMT Awareness Month right now. During this time, when I spend extra moments reflecting on what living with CMT can mean, I look forward to seeing more growth, more awareness, and new connections forming within disability communities because I believe that building those relationships is important.
I’m lucky to have had, in my father, another CMTer in my life from the beginning. I can only imagine how difficult and challenging it can be to live alone with a disability in this world. And while I’m sure many strong people may be able to manage alone, I hope we can create a world where that won’t be a necessity for anyone.
Note: Charcot-Marie-Tooth News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Charcot-Marie-Tooth News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Charcot-Marie-Tooth disease.
About the Author
Phil
This was a very insightful sharing. At 66 years old my CMT became apparent in my mid 50’s. I am the father of 4 wonderful girls and they along with my wife have witnessed the progression. My faith in God gas strengthened with this CMT affliction. Thank you for the article.
I’ve posted several times about my nightly Rebuilder Medical device and my DGYAO infrared treatment. These devices calm the pain and allows me to sleep at night. Supplements, vitamins and a good diet all help. I use zero big pharma drugs. I excercise regularly. I try to be an example of grit, determination and fortitude for my family.
Jean Krogstad
I too watched the advancement of my CMT over the years but have worked hard with good supplements, good dietary choices, exercise like chair yoga, circuit training and walking so very grateful now at 77, I am still upright and moving!! Disappointed as is mentioned with muscle weakness but stay positive and try hard to be an example to our son and grandson who also are showing symptoms but encouraging them to remain active, wear good shoes and move forward.
Mary Anne Schinkel-Venema
Diagnosed with CMT at age 60 and still upright..(CMT2A) Balance is becoming very poor and using a roll at or more often especially for sitting for brief periods of time
. Any advice on lessening night time neuropathic pain would be appreciated …
john stinger
I use a hand rub of olive oil and fanikincense every night after massaging my hands,arms and feet with a hand held massager for 10 mins.Use this mix every night-takes a week to work ( 2 drops of frank to 10 drops of olive oil).I also take one tylenol every four hours during the day-one before bed.No more than 6 pills a day.Some days I take a day off from all pills just for fun!
I also light exercise arms and hands every morning-not on Sunday. Also after a hot shower riinse my hands arms and feet with cold water.Im 87 -been fighting this since I was 60.Hope you feel better! PS- Light exercise legs a feet three times a week-in the am.