20 years ago, our first fundraiser was an “End of Tax Season Bar Crawl”. We sold t-shirts with the proceeds being donated to the FSHD Society. The past couple of years, people have been asking me to organize another bar crawl.
My sister Katie and I decided what better time to do this than the 20th Anniversary Year!
Hello, my name is Chris Stenmon
and I was diagnosed with FSH muscular dystrophy at age 16. I was on the wrestling team at Boston College High School and was working as hard as others on our team, however, I was not getting stronger and thought something was wrong. In some ways the diagnosis for me was a relief. At least I knew what was causing me the strength problems. I look at this like other things I had, have, and will have in life. Let’s work through this and continue to fight. I, along with family and friends organized fundraisers for 16 years to raise research funds for grants specifically for FSH. Over those years, we raised over $300,000. In addition to raising funds, we were spreading awareness about a disease many were not aware of. By beginning these fundraising efforts and spreading awareness, others with the disease around the United States also began similar type fundraising events.
Over the years, the disease has progressed and 4 ½ years ago I needed to begin using a scooter. I purchased a Toyota Sienna with a lowered floor ramp. I needed this van so that I could continue to work to support my family by commuting to work and visiting clients throughout New England. I have been employed by O’Connor & Drew for 23 years. I love the work that I do helping people and our community.
A year and a half ago, I had a few panic attacks and decided that it was time that I needed to explore additional adaptive equipment to remaining driving. It has been 18 months since I have driven, and it has been very difficult relying on others and public transportation to get around. Even though I have continued to go to work every day, not having my driving independence has been tough.
What is it like living with FSH muscular dystrophy?
Somebody once asked me to describe what it is like living with FSHD muscular dystrophy. Below is how I describe it.
FSHD slowly tries to knock you down.
- It starts in Babe Ruth baseball on Adams field in Quincy, when you're not being able to make the throw from short stop to first base.
- Then you continue lifting weights trying to get stronger and work harder, but the muscles just won’t cooperate.
- Then you start to have trouble running down the full court and shooting a basketball.
- Then you go for a job interview and meet new people and they say, 'why don’t you smile' or 'why is is so serious all the time?'.
- You continue to not tell people about for FSHD because you don’t want to be treated differently.
- Then you start tripping and have some falls and realize you need leg braces to help with your foot drop.
- You realize it’s time to let people know about your FSHD and begin to ask for and allow others to help.
- Your walking and mobility gets worse. You are unsteady when it’s windy, rainy, icy, or there is sand on the ground.
- You think about every step you take in fear of falling.
- You realize you need a cane to help you walk.
- You fall a few more times, this time it happens at work. You are embarrassed but know people will be there to help.
- You start to need help getting up from a chair.
- You continue to have more trouble walking and now it’s time to use a mobility scooter and walker.
- Then, you need to get a van with a ramp to accommodate the scooter.
- You have several more falls. You must call the fire department to assist with lifting you up as it takes more than one person to do this and you don’t want other family members and friends to get hurt as you have very little core and leg strength.
- You start walking much less frequently due to the fear of falling. You begin using a power wheel chair.
- You continue to fight, but the progression of the disease is punching you harder and harder each day.
- The key is to try to keep getting up after being knocked down.
- Surround yourself with great friends and family, keep a positive attitude, don’t be afraid to ask for help, and continue to remain mentally tough.
- Never give up!