Local residents will be gathering to support a tremendous cause June 2nd at the Red Deer Walk for Muscular Dystrophy.
The event, slated to take place at McKenzie Trails Recreation Area, kicks off with registration at noon.
The walk begins at 1 p.m.
Event Ambassador Aaron Tarnowski said funds raised go to a number of initiatives that bring amazing support to local folks with muscular dystrophy (MD).
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 Tarnowski, 46, being a part of a group like this has helped to make a significant difference in his life as he deals with the challenges of MD, of which there are more than 100 different forms.
He is also one of the original members of the Central Alberta chapter formed back in the late 1980s, as there was little in the way of support for those with MD at that time.
Since the establishment of the chapter, that has changed significantly.
“It’s about knowing if you need any kind of advice or support, you’ve always got someone willing to be there and to help you out in whatever capacity you need.
“Another big thing, as far as the chapter goes and the fundraising, is that it’s huge for (helping with) equipment. Without our fundraising and our chapter, I never would have been able to make my house as accessible for me the way it is.”
This in itself makes a world of difference for those with MD, helping to vastly improve their lives via bolstered mobility and access.
“All of that is paid for by MD fundraising through the equipment program,” he said. “It really helps. And other chapter members, whether they need walkers or wheelchairs, or any kind of special equipment – the support is really big when it comes to that.
Looking back, prior to his diagnosis, Tarnowski recalls being an active, healthy kid.
“When I was five, my parents noticed that when I was tired I would tend to walk on my toes which is actually quite a common sign for some of the forms of MD,” he said. “But we had no idea about that.”
He was ultimately diagnosed in his teens.
“They referred me to some specialists. At first, they thought I had cerebral palsy. Then they thought I might have had multiple sclerosis.”
Eventually, an Edmonton specialist was able to diagnose the FSH form of muscular dystrophy.
“By the time I was even 16, I couldn’t run anymore. I was collapsing all of the time. My knees would just give out and I’d come crashing down to the ground,” he recalled. “I couldn’t get back up on my own, unless there was someone there to lift me up or something I could crawl to to try and prop myself up.
Around the time of the diagnosis, he also recalled feeling a huge sense of uncertainty about what the future held.
“The doctor told me that I would be in a wheelchair in the future. But he couldn’t really give a time frame as to when, because everyone progresses differently. So I wasn’t sure if I’d be in a chair at 30, or the next month.”
To this day, he experiences progressions with his MD which can last anywhere from a week to two months without letting up. “Then it kind of levels off and stops.
“It will never stop progressing. It’s always ongoing.”
Meanwhile, Tarnowski credits a solid support system of good friends and family with helping him adjust to all the changes.
“Family and friends are the biggest (support) without a doubt, because without them, who do you have to talk to? You know that you can divulge all of this personal information to someone and not have them be judgmental.
Ultimately, Tarnowski maintains an amazing attitude through it all.
That’s not to say he hasn’t had his share of bad days, but he exudes an upbeat, forward-focused stance that is remarkable – and deeply inspiring.
“I have good days and bad days, but the dark times for me were when I was initially diagnosed because it was a scary time. You are younger, you are getting in that stage where you are self-conscious. There are definitely moments of doubt and frustration, but you kind of get that mantra of ‘get busy living or get busy dying’.
“There is no real gray area when it comes to that. The hardest part is constantly adjusting,” he explained. “When it comes to a progressive disease, you are constantly learning how to adapt.
Visit www.muscle.ca for more about the Red Deer Walk for Muscular Dystrophy.