If you were to have asked Kimberley a couple years ago the definition of Amyotrophic Lateral Sclerosis, she would have admitted that she did not know. Medically speaking, the word “lateral” identifies the area where nerve cells in the spinal cord that nourish the muscles are located. As nerve cells die, the muscles receive no signals from the brain and waste away from lack of use. Sclerosis occurs as the area affected deteriorates. For individuals and families living with ALS, the definition is much more personal than that.
Kimberley`s father, Thomas, passed away from ALS in June 2016, only five short months after his diagnosis. He quickly progressed from needing the help of a cane, then a walker, and finally a wheelchair. Family dinners at the dining room table first involved eating from a lift chair, then being spoon-fed and eventually relying on pureed food. A man who used to sit on the couch cheering for his favourite sports team became a man who could only speak in short sentences or, single words and, near the end of his journey, he relied on blinking to communicate. Most people diagnosed with ALS receive a prognosis of two to five years, but Thomas’ doctors said his was one of the quickest progressions they had ever seen.
His ALS diagnosis took away many things for Thomas in terms of mobility and communication – but what it never took away was the love he received from Kimberley and the rest of his family and friends.
“Comfort was our main priority,” says Kimberley, as she reflects on memories of her father. “As to be expected, we only wanted the best for him for the remaining time we had.”
Five months is a short amount of time to process an ALS diagnosis, making every moment precious. ALS is a debilitating disease, but a father is always a father, a mother is always a mother, and each moment you are given with a loved one is a blessing.
Today, Kimberley and her family walk in memory of Thomas at their local WALK for ALS. Forty per cent of proceeds from the WALK go towards research and 60 per cent go towards client services. ALS Canada supports the Canadian ALS research community and uses best practices in research funding to award grants with the greatest promise to slow down ALS or even stop it. ALS Canada also connects with people living with ALS and their caregivers to serve as a guide on their journey. Some examples include navigating the healthcare system, identifying community supports, answering questions and providing access to equipment that responds to mobility limitations. None of this would be possible without the support of our donors.
“No amount is too small,” says Kimberley. “Together, we are hopeful for a cure for ALS.”
Thanks to the generous donors of ALS Canada, Kimberley was able to care for her father in their family home. ALS Canada provided Thomas with the necessary equipment, services and emotional support he and his family needed to navigate their ALS journey. Without donor funding and support, this equipment and these services would not have been possible.
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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.