Local man discusses challenges of muscular dystrophy

The Red Deer Walk for Muscular Dystrophy takes place June 4th

  • May. 25, 2016 3:05 p.m.

With June approaching, organizers are gearing up for the annual fundraising walk for muscular dystrophy which is set for June 4th.

The Red Deer Walk for Muscular Dystrophy takes place at McKenzie Trails, starting with registration at 11 a.m.

The walk starts at 1 p.m.

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.

There is a Red Deer group that meets throughout the year, plus it hosts social get-togethers. For City resident Aaron Tarnowski, 44, 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.

This year, he is the Walk Ambassador for the Red Deer Walk for Muscular Dystrophy as well.

“Basically, my role is about promoting the event, saying what it’s all about,” he explained. “If anyone has any questions or wants to know any more about it – I can always help with that.

“Also, if folks need information about anything to do with MD in general or our Central Alberta chapter and any resources we can make available to them.

“I became involved in the walk when the Central Alberta chapter began hosting the event in Red Deer,” he noted on the www.muscle.ca web site. “Having an event like this has definite benefits for things like my family and community as well. It a chance for people in the community to meet with families, clients and others involved with the association. As well as having a fun time participating in a great event!

“I also look forward the seeing people and participants from past walks, as well as new faces. I absolutely like meeting new people on the walks. It’s a chance to get to know them, and thank them for their participation towards a good cause.”

Tarnowski was diagnosed with MD at around 13 years of age.

He said a lack of awareness still exists in the community to a certain degree. Sometimes, there is confusion between it and multiple sclerosis, for example.

“It’s a neuro-muscular disease, not a neurological one,” he said. “There are also more than 100 different forms of MD. So trying to get diagnosed with an exact form can be a real chore sometimes.”

Looking back, prior to his diagnosis, Tarnowski recalls being an active, healthy child.

“One of my my very, very first symptoms – which we didn’t at first attribute to MD but it probably was – was that I would walk on my toes when I was little,” he explained. “Basically, what was happening was my bones were growing and my muscles were growing, but my tendons weren’t growing quite as fast.

“So I was walking around on the balls of my toes,” he said, adding he did have a corrective surgery but it wasn’t helpful.

But whatever the obstacles then, they didn’t get in the way of him diving into typical youth-oriented activities.

“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.

“The first really major sign of any weakness was also when I would be climbing stairs,” he recalled.

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. He recalls dealing with the physical aspects of it as not being as hard as dealing with bullies. “My whole junior high and high school years were nothing but being picked on and teased,” he remembers. “It was fun for some people to come up behind me and put their foot behind my leg and push so my knee would unlock and I’d fall to the ground.”

Being in a wheelchair also brings its share of challenges as well what with the sometimes awkward reactions people show to it. “People can ask me about it – I’m not going to be offended by it,” he said. “It’s nice to actually have people come up and say, ‘You don’t mind me asking what happened?’ I’ll talk to them for as long as they want and give them any answers.”

Also, in his earlier years, there wasn’t much of a community support system at that time either.

“When I was diagnosed back then, we didn’t have anything like Calgary, or Central Alberta or Edmonton chapters or groups like that,” he said. “We started up the Red Deer chapter as members over 20 years ago. It started out as a networking group with other people who had MD. It’s a support group for each other where we can find out about conferences with doctors to get research updates, or trying to bring awareness to the public in any way that we could,” he said. “We started out with four or five members – just a small group. And only two or three of us were from Red Deer. The others were from Olds, Stettler and Rocky. They would drive in from all over Central Alberta.”

Today’s membership in the local chapter numbers about 25-plus.

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.

Meanwhile, Tarnowski also credits a solid support system of good friends and family with helping him adjust to all the changes. And that support remains a critical part of staying upbeat.

“I think when you are able to learn to accept the fact that you can’t do some things anymore – you retrain yourself to do it differently – what works best for you,” he said.

“It’s all attitude. If you don’t have a positive attitude or outlook towards it, the negativity will build up and it will eat you up. And the more that happens, the harder it will be for you to move ahead.”

Visit www.muscle.ca. Sign up for the walk online at www.walkformusculardystrophy.ca or call 1-800-661-9312.


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