When Shelly Gregory first noticed her speech was slurred two years ago, she drove herself to the hospital in Belleville thinking she was having a stroke. Eight months later, in May 2018, she learned she had bulbar onset amyotrophic lateral sclerosis – a form of ALS that first affects people from the neck up.

Since her diagnosis, Shelly’s symptoms have progressed rapidly, making it increasingly difficult for her to be independent. She has completely lost the ability to speak and is also losing her ability to swallow, which makes eating and drinking extremely difficult. She cannot clear her throat without the assistance of equipment, which she has had loaned to her by ALS Canada. The disease is also starting to affect her ankles, requiring her to use a walker to stay mobile.

Living with ALS turns people’s lives upside down. The disease means having to continuously give up many of the activities that make life interesting, enjoyable, and fulfilling as the disease takes away mobility and communication ability.

Despite the challenges, Shelly stays positive and remains as active as she can. She draws strength from the support of her children Cindy, Sue, Mike, and their spouses, along with her dog, Bear. “He is always by my side watching over me,” she says. Since retiring from her career as a real estate agent in March 2018, Shelly has been busy making quilts. “I’ve lost count but since being diagnosed with ALS, I’ve made approximately 25-30 quilts for family and friends.” Shelly wants to continue creating for as long as she can use her hands.

As the date for the Walk to End ALS in Belleville-Quinte approaches, her team, “Snoopy’s Gang,” is seeking online donations and sponsorships to help raise awareness about ALS. “I hope by sharing my story people will learn more about the struggles ALS patients and their families face,” she says. “Before being diagnosed, I knew very little about the disease. Now I know that no one is immune. This horrible disease can affect anyone at any age. It’s time we do something about it.”

Shelly admits the day of the Walk will bring a mix of emotions. She’s looking forward to driving her new scooter to complete the 5km circuit. In addition to the excitement, she has some trepidation knowing that some of her past acquaintances will be learning about her illness for the first time since the onset of her symptoms. Regardless, Shelly is eager to reach as many people as possible with her message: Funding ALS research is the only way we can make it to the finish line in the race for a cure. That day can’t come soon enough.


The Walk to End ALS takes place in over 90 communities across Canada until September 2019. Register or donate to a Walk to End ALS near you at www.walktoendals.ca.

Your fundraising efforts and generous donations support the best ALS research in the country and enable ALS Canada to provide community-based support to people and families living with the disease in Ontario. Donations for all Walk to End ALS events are being accepted until December 31, 2019.

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