Sault Ste. Marie WALK for ALS

ALS usually moves at a rapid pace but Sharon Carson has been living with the disease for almost 30 years. It started with loss of control in her hands and arms making it difficult for her to manage doorknobs, seatbelts, buttons, and shoelaces – and then restricting her ability to drive, dress herself, and eat on her own. When she first noticed troubling symptoms in the late 1980’s, “there was so little known about ALS,” recalls Sharon, and the ALS community itself was less connected than it is today. It took two years before she received an official diagnosis, and some effort on her part to find a supportive network of people.

Two people living with ALS posing with WALK for ALS participant and friendLike many people who have been touched by ALS, Sharon felt isolated. At the time, support groups like the ones currently offered by ALS Canada were not readily available so Sharon started her own small group. Shortly after, she heard about the WALK for ALS and together with her friend, Evelyn, organized a community BBQ and a fundraiser with the OHL hockey team in Sault Ste. Marie to help raise money for the event. Sharon was highly motivated by the tremendous need for community-based support and for ALS research to help scientists better understand the disease, find treatments, and provide hope for the future.

Over the years, Sharon’s enthusiasm for the cause has never waned. To this day, she and her family remain active volunteers and participants in the Sault Ste. Marie WALK for ALS on June 2, celebrating the “amazing” progress that’s being made as a result of persistent and continued efforts to raise the profile of ALS in Canada. Reflecting on her years of involvement with the WALK, what stands out most for Sharon and her husband, Norm, is an ongoing sense of “belonging, understanding, friendship and hope.” They return year after year to help with some of the many tasks involved in running an event like the WALK.

The fundraising aspect of the event is also important for Sharon because of the critical need Woman posing with ALS Canada CEOto increase the level of funding available for ALS research and support. When her kids were younger, she organized a special “hat day” at different schools to help secure pledges and though it can sometimes be difficult to keep the momentum, she knows it is crucial for building a better future.

When she isn’t volunteering, Sharon tries hard to stay positive and maintain her “what shall be, shall be” approach to life. As a mother and now a grandmother, she says she is thankful her disease has progressed slowly over the years and blessed to have had the chance to make so many family memories. Still, she feels robbed, especially in moments when she would love to play with her grandchildren. She tries to work around her limitations as best she can. For example, she trained one of her young grandsons to be “accessible” to people with disabilities. Since she couldn’t pick him up facing her, Sharon taught him to back up against her knees so she could put her arm under his and slide him on to her lap. “Then every time he wanted ‘up’, he would back into people,” says Sharon. It’s a moment like that when everyone can laugh together, that the challenges of living with ALS can appear just a little bit less overwhelming.

The WALK for ALS takes place in over 90 communities across Canada until September 2018. Register or donate to a WALK near you at Donations for all WALK for ALS events are being accepted until December 31, 2018.

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