August 13, 2020 at 4:00 pm #16018Leah LeilaniKeymaster
Today’s Member Spotlight features Pete Barron
Can you start off by sharing a little about your life with Muscular dystrophy, the type of MD you are diagnosed with and at what age you were diagnosed?
I have Myotonic Muscular Dystrophy type 2. It is not actually related to type 1 which is much more common and more debilitating, it is on a different chromosome. Myotonic type 2 is adult onset and comes usually from one parent and affects 50% of their children. In my case it looks like my dad had it although he died 10 years before the genetic disease was figured out. He had 7 kids, 3 of us have it and 3 do not, and one of us is an asymptomatic carrier. I was finally diagnosed via genetic testing when I was 52.
What symptoms did you experience that lead you to believe you had Muscular Dystrophy?
In my mid 40’s I started having problems that didn’t make sense with my age and conditioning. I was losing balance and strength and injuring my connective tissue when I tried to workout. My older sister was having similar symptoms so when she got diagnosed they did the same genetic test on me and I was positive.
In what ways has Muscular Dystrophy changed and/or affected your life?
In 2008 with the economy crashing and my mounting physical problems I lost my job and was unable to land another one. I applied for SSDI and became retired on disability. I also “fell” into a power chair then and realized how much easier and safer it was for me to get around then, so I became an active volunteer and continued my work just without getting paid!
What has life with Muscular Dystrophy taught you about yourself and the world around you?
Walking isn’t so important, getting there is! I feel immensely grateful that I was able to run, ski, swim, and wrestle when I was young… I know so many people who never had that opportunity.I reminisce about those times, but they are in the past. Now is the time for other joys and there are so many of them!
What sort of language do you use when describing yourself with MD? For example, do you prefer first person language, being described as disabled or chronically ill, wheelchair bound or not?
Pain is necessary, suffering is optional! I don’t suffer from anything even though I struggle with many things. I am just a guy living my life, none of those terms describe me.
What are some ways you maintain your mental and physical health besides taking medication and visiting doctors?
I enjoy visiting with friends and family, we all take care of each other in so many ways! I enjoy travelling and spending time in other cultures, which I’m sure I’ll get back to once this “damnpenic” is over. Physically, I swim when I can, (not regularly right now), I ride my recumbent trike and I push myself around in my manual chair. Repetative low resistance exercise works well for me and gets my breathing up and my heart pumping.
How has a lack of education about disability, media stigmas and old ideas about people with disabilities affected your life?
I get constantly surprised by people who believe I am being punished by my disability, and why don’t I just ask forgiveness and get over it! The more of us that are out there just doing our lives, the better folks learn to understand. Everybody gets disabled if they live long enough, the only way to get spared is to die young, and who wants that?
What is your current or past job and how does your disability affect it?
I worked as a teacher and a counselor, I also did building construction when I could. I never did consider myself as a disabled teacher, counselor, or builder.
What advice would you give other people with Muscular Dystrophy to live a happy and fulfilling life with a disability?
I think everybody is disabled in some ways, just like we are all geniuses in other ways. I know people who are disabled in math, or drawing, or dancing, but are geniuses in cooking, writing, or chess. Concentrate on what you can do and do it well!
August 14, 2020 at 4:56 pm #16027LaylaParticipant
Thank you for sharing your story, you’re positivity is inspiring. Look after yourself
September 3, 2020 at 1:47 am #16093CarlospParticipant
I would advise trying to use medical cannabis. I have the same problems and it really helps me.
September 14, 2020 at 8:56 am #16136
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