When Shelley first started to notice a change in her gait, she had no idea that an ALS diagnosis was on the horizon. In fact, up until her neurologist confirmed the diagnosis in early 2016, Shelley didn’t even know what ALS was. For many people and families living with ALS, the diagnosis can come as a shock; that was certainly true for Shelley’s family. However, she has made the conscious decision to remain positive and grateful for everything life throws her way.

Shelley has always lived her life with an unwavering positivity, a trait she says she inherited from her mother. She is the youngest of three girls and believes her unique strength is her ability to make friends, which has helped her achieve fundraising goals for her local WALK for ALS. Last year, Shelley participated in her first WALK, where she rallied a team of 120 friends and family members and raised over $17,000. This year, her goal was to raise $10,000; she surpassed her goal days before the WALK.

A year and a half into her diagnosis, Shelley has lost the ability to walk. Even though she now relies on a wheelchair to get around, she jokes that she “always has somewhere to sit!” and that travelling has become more convenient, because she always jumps to the front of the line.

Not everyone shares Shelley’s bright outlook – her husband and two children were devastated when they heard the news, all three breaking down in tears. It was Shelley who reassured them that she was still the same person, that her humour would never fade, and that she was lucky for all the support she has around her.

When asked about the most difficult part of living with ALS, Shelley cites the role of caregivers, family and friends. Over a year into her diagnosis, Shelley is still the “happy goofball” she has always been, but the situation is often most difficult for the ones on the outside.

“I remember one day I fell and couldn’t get up,” says Shelley, “so we called the paramedics. One of the paramedics’ fathers had ALS. When I assured her that I wasn’t in any pain, her response was ‘It hurts the family.’”

Shelley’s advice to caregivers is to take a break for yourself, even if you don’t think you need the respite, because you need to be “in good shape” to come back and care for your loved one.

ALS Canada has helped Shelley access a wheelchair, a hospital bed, and a power chair. She says her Regional Manager, Laurie, has been a source of invaluable support and credible information that doesn’t come from “Dr. Google.” This year, Shelley was the Ambassador for her local WALK for ALS, MC’ing the event and introducing ALS Canada CEO, Tammy Moore and the Mayor to the stage.

When thinking about how to write her speech for the WALK, Shelley says she had to deliberate carefully on how to communicate her story to others in the community: everyone’s journey is different, and she acknowledges that her upbeat outlook might be uncommon or even unusual. While she feels like her personal situation could be much worse than it is, she focused on encouraging people living with ALS to “do what they can’t,” giving them tips and tricks to help them along the way.

For example, Shelley’s daughter dreamed of taking her mother to Rome, but they were told they would only be able to see 20 per cent of the Roman Forum in a wheelchair. Shelley approached this as a challenge, and was able to see 80 per cent of the Forum. “It was a little bumpy,” she says, “but it was fun as anything!”

Shelley believes that she is able to face her ALS diagnosis because of the support of her family. She says that “without family, this would be a very difficult disease.” Her husband, Jim, continues to care for her on his own in the evenings, her daughter comes home every weekend, and her son lives at home and does everything he can to help his mom.

“I’m so fortunate,” she says. “Everyone has their battle to fight; mine isn’t so bad. I have no pain. I’m a little limited physically, but that’s it. And on top of that, my power chair goes really fast!”

During the month of June for ALS Awareness Month, we will be sharing the stories of people living with and affected by ALS who have chosen to seize each day in whatever way they can. You can also share your own stories and reflections on Facebook, Twitter and Instagram and hashtag #SeizeTodayALS.

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