Over the last 2 years, I’ve been blessed to be able to connect with some resilient athletes. I’m talking about those who have rare and even incurable diseases.
One such athlete I’ve gotten to know is Joshua Cohen. He was diagnosed with Huntington’s Disease about 7 years ago and continues to give his all in triathlons in Florida.
First, a bit about Huntington’s Disease, in case you don’t already know. HD as it is commonly referred to, is a fatal genetic disorder which progressively attacks nerve cells within the brain. There are around 30,000 people in the US with the disease. Worldwide, it affects 3 to 7 people out of 100,000 people (of European ancestry).
Huntington’s Disease is described by many as ALS, Parkinson’s and Alzheimer’s combined. It’s easy to see how anyone could crumble under such enormous pressure, let alone participate in competitive athletics.
And so, we come to Joshua Cohen. He was kind enough to answer some questions I had about his situation and his journey with HD. Here’s the interview:
Mark: What did you think when you were first diagnosed? How did you feel about it?
Joshua: The moment they drew my blood I knew I had it. My doctor is the same neurologist who took care of my dad. He and my wife were both crying and I was numb.
My brother never wanted to deal with the reality of us being at risk for HD when our parents told us about my dad. I read whatever I could about HD back in 1990. In ’93 they discovered the gene that causes HD and had a mouse model of it by ’95. It was a very exciting time and I got a B.S. in experimental psychology so I could be as involved with everything HD-related. I ran a support group and went to the national convention every year. I even moved to Boston to work in an HD lab with the mouse model.
When I tested positive I did hope that I had it and my brother would not. He has two daughters who were born with in vitro so he still doesn’t know.
Mark: Most people with this diagnosis would be apt to feel sorry for themselves. What flipped the switch?
Joshua: My dad was so mellow about his approach to making the most of his life. Now that my disease is progressing, I try to do the same.
Mark: When did you decide that doing triathlons was the way forward?
Joshua: My father was always the cool nurturing athletic parent. 26 years ago the Huntington’s Disease support group in Miami put on a triathlon to raise money HD research and awareness. We were all involved in some ways or another. My dad worked out as much as he could and did the race every year until he passed in ’97. My brother and I did that one race or volunteered almost every year.
Mark: How long have you been doing triathlons?
Joshua: About 26 years. I started before my diagnosis. I do the HD triathlon every summer.
Mark: Is there a difference between the Joshua Cohen pre-diagnosis and Joshua Cohen today?
Joshua: I have come to terms with my life my abilities and limitations. I have daily exercise routines. On a good week, I exercise every day. My wife helped me set up my weekly routine and a workout room. My wife filled out all of my disability papers and she is happy that I have time to workout every day. My job is to exercise. She also takes care of my diet so I can eat gluten and dairy free. She also convinced me to get a job at a grocery store.
Mark: What keeps you going?
Joshua: Being there for Lynn (his wife) and exercising.
Mark: Speaking of Lynn, your wife has MS (Multiple Sclerosis). How has that changed how you view and deal with your own disease?
Joshua: My wife has secondary progressive MS. She uses a cane and a walker to get around the house. My wife is an amazing woman, we are lucky to have each other. We can appreciate each other’s challenges. We do as much we can for each other. She handles all the planning memory and details. She was a nurse. She still has a great heart and head on her shoulders.
Mark: How do you train for a triathlon? How does the HD affect your training? Are there any things that are more difficult for you and how do you overcome those obstacles?
Joshua: I get dizzy, have trouble with balance and attention, my reflexes are slow. I have trouble breathing eating and drinking when exercising. Everything I eat and drink makes me gassy and belchy. I make a lot of funny noises all the time.
Normal people wake up, have coffee and are able to eat and drink to cover their needs during exercise. They have a quick breakfast and spend their day at work.
It takes me about two and a half hours to get up and ready. I have 3 tablespoons of sunflower seed butter 2 cups of protein shake and 2 cups of water.
Immediately after exercising I have 3 tablespoons of sunflower seed butter and electrolytes. I don’t eat or drink while exercising. Sometimes even being perfectly still I can choke or vomit.
After coming home, I eat a lot of my wife’s homemade ice cream and pudding.
I like to sleep a few hours after exercising. I filled out the paperwork so, when I compete it’s under a different category called para-triathlete. I compete against people with injuries or other brain disorders.
Mark: What’s your advice for people who just got diagnosed?
Joshua: Don’t just sit there, do whatever you normally do. Testing positive can be the best thing to happen to you. Find ways to keep your brain and body going.Thank you for getting me involved with your blog!
I felt grateful to have the opportunity to talk to Joshua Cohen about his journey and share his insights with you. Hopefully, this small interview will inspire you through your own struggles.
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