Jim has lived with Charco-Marie-Tooth disease, which affects peripheral nerves that control the muscles, since childhood. He was diagnosed with multiple sclerosis at 60 years old. He urges those who are recently diagnosed with a condition to accept, process and move past emotions triggered by the news. These are his words.
Passions & Actions
When it comes to my health, I am most concerned about privacy issues, honesty from my healthcare providers (and from me to them) and about the need for a universal healthcare system like that provided in so many countries in the world.
In other areas of my life, I am passionate about making certain those who represent us in government truly do so. I do this by regular communication with those in government about issues I care about. These include climate change, fair representation, voting rights and disability rights. I am also an avid birder and gardener.
Reactions & Perspectives
My wife has stood with me through the many trials and tribulations of my medical life. She has provided me care when I was at my most ill and continues to provide care as my health has improved, but continues to be a challenge.
Freak out [if you’re diagnosed with a condition]! You will feel the need to do this. If you do not acknowledge your emotional reactions to [your] diagnosis, you risk staying stuck in an unhealthy state.
Get it over with and then, with the help of your support system, figure out how to live your life as fully as possible. There will be many emotional highs and lows. Experience [them], but don’t get stuck there.
A diagnosis is not the end of the world. Many people are relieved to finally have a name for what is going on. You may have to change behaviors and accept limitations. Or you may simply have to find a new normal.
There is life after diagnosis!
Diagnosed with Charcot-Marie-Tooth disease and multiple sclerosis
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