With June approaching, organizers are gearing up for the annual fundraising walk for muscular dystrophy which is set for June 6th.
The Red Deer Walk for Muscular Dystrophy takes place at McKenzie Trails, starting with registration at 1 p.m. The walk starts at 2 p.m.
Besides the walk, there will be entertainment, face painting, photos and food, organizers say. Muscular dystrophy is the name of a group of genetic muscle disorders that are characterized by progressive weakness and wasting of the voluntary muscles that control body movement. Currently there is no cure.
People with CMT usually have problems with their feet and hands, including feet deformity, foot drop, abnormal sensations and loss of fine motor skills. Not everyone with CMT is affected in the same way.
There is a Red Deer group that meets throughout the year, plus it hosts social get-togethers. For City resident Aaron Tarnowski, 43, being a part of a group like this has helped to make a tremendous difference in his life as he deals with the challenges of MD, of which there are more than 100 different forms.
“I was pretty much a healthy kid,” he explained, recalling his early years. “I didn’t really have any problems, except for a minor surgery because I was having trouble keeping my heels on the ground. We thought it was just a typical tightening of the heel cords.” A few years later, he had to have another surgery. After that, things were normal.
“I played hockey, baseball – did all the things a kid does – camping, dirt biking,” he said. “But I started to notice problems with fatigue, and getting tired easily. I was starting to have more problems climbing stairs, my knees felt weak and I would start just collapsing and finding it very hard to get back up. Eventually, over time, I would have to crawl over to something to grab onto to get up. If there wasn’t something around, I’d have to ask for someone’s assistance, if they could literally boost me up.”
This started when Tarnowski was in his early teens. Over the next couple of years, he saw numerous specialists. “At first they thought I had cerebral palsy, then they thought I had multiple sclerosis.”
Eventually, an Edmonton specialist was able to diagnose the FSH form of muscular dystrophy. He was diagnosed in the mid-1980s when he was in Grade 8.
According to Muscular Dystrophy Canada, anyone can be affected by these disorders. Principal symptoms include progressive muscle wasting, weakness, and loss of function.
The severity and progression vary depending on the exact diagnosis and the individual.
“When you are first diagnosed, it’s pretty devastating – you don’t know what your future is going to hold,” he said. “You do what you have to do to deal with it at the time.
“I was so scared about what my future might hold, I didn’t want to think about it.”
But along the way, he started making better, more positive choices about how he was going to handle it. “I got through with the support of friends helping me see the light.
“It’s also about finding the motivation to know that you can still get out there and make a change and make people aware of things like MD and the need for equipment. And nowadays, nothing is cheap – especially when it comes to anything medically-related,” he added, referring to the aids and equipment that those with MD typically need.
Today, Tarnowski is confined to a wheelchair, and has been for about 20 years. For all the challenges he lives with, he is extremely positive and engaging, and eager to reach out and help others who have had and are facing similar health battles.
“I transitioned slowly to using a wheelchair – I tried using my legs as much as I could. Being a young guy, I was kind of in denial – you know what’s going to happen but accepting it is not an easy thing, especially when you are at that age, in your mid-teens. You are playing sports and being active, and all of a sudden you’re sitting on the sidelines watching all your friends. You were in there with them, and now, you just can’t do that.”
Sadly, he was also bullied in those years. “I was poked fun at lots, but that’s just life. There are always going to be bullies. But it makes you a stronger person, and it makes you very good at conflict resolution,” he added with a laugh. “I think people who go through life with a disability are stronger in character in a way because they have no choice but to be.
“The focus also changes to what can I do, and what more can I do? And how far can I push myself to be able to do it?”
Tarnowski credits a solid support system of good friends with helping him adjust to all the changes. And that support remains a critical part of staying upbeat. He was instrumental in starting the MD chapter in Red Deer more than 20 years ago.
“We started it more as a support group, but over the years it grew and we got more involved in fundraisers. Anyway we could build awareness and raise money for both research and equipment was our biggest priority. We know how limited it is to be able to get some of the specialized equipment and there isn’t a lot of funding out there government-wise.”
Meanwhile, Tarnowski is steadfastly optimistic about the scientific advances being made in research, and his outlook on life no doubt fuels his joyful spirit.
“Everybody has a story, and everybody’s story deserves to be heard – no matter how sad or how happy it is. It helps others gain a new perspective on life in general – life as a whole and what people have to go through on a daily basis.
“It could be one story from one person that could strike a nerve in someone and change their life. It could make them want to do more to raise awareness. If you can really educate people and make them aware – make them aware of what MD is, what it’s all about, how many people it really does affect – people would be a lot more open.
“If I can open up even just one person’s mind, then my job is done. That’s all it takes – because it just takes one person to change the world. I love educating people on that.”
Visit www.muscle.ca. Sign up for the walk online at www.walkformusculardystrophy.ca or call 1-800-661-9312.