I first knew I needed help when I was unable to work the snaps on my new-born son's sleeper. Five months of denial, losing strength in my hands, and deteriorating fine motor skills. This was around the start of 2020, but there were so many things that denial could no longer be an option. I sought medical help with my primary doctor who referred me to a neurologist, who started by admitting me to the University of Alberta hospital. They knew it would be much faster to perform every test under the sun on me as an in-patient, and we would get results as soon as possible. I saw four neurologists in the course of four days. Here I am, 31 years old, with a loving husband, a 2 year old, and a 6- month-old, and I’m sitting all alone being told I have a terminal illness with a short expiry date. My fight or flight instincts kicked in, I wanted to wrap up my loved ones and flee. So, we packed up and went to the lake to absorb and process this devastating news. Two weeks later, it was time to meet the team at the multi clinic and start our ALS journey. June 19, 2020 - it was the hardest day of my life.
I am a mother and wife first. I like to knit… (just kidding, you would need hands for that)! So instead, I started tattooing my arm. I proudly salute ALS [through a tattoo] on my middle finger every day. My family is always numero uno, we just keep living. I am still Jenna, wife, mother, and Bad Ass! I have a young family that needs me. I run my household every day by being present, planning, scheduling, and making sure my kids have a normal upbringing.
I have the best team on this earth. We went the route of self-managed home care, which allows me to remain home until the bitter end. With this program, I have hired my own care team who love me and care for my best interests. We are supported by the ALS Society, with the Equipment Loan Program and support groups for myself and my caregivers. My community continues to support me every day with their generosity.
We are blessed with the ALS Society of Alberta, especially through their Support for Champions program. This program helps to ease some of the financial burden of my children's activities, like swimming, skating, gymnastics, and soccer. Programs like these Make their activities Possible. Over the years, they have provided me with loans of wheelchairs, walkers, porch-lifts, a sit-to-stand hoyer lift, and much more. This Makes living at home Possible. I have been the Wainwright Walk Together for ALS Ambassador for the last three years, and through these efforts we have raised nearly $50,000 for the ALS Society of Alberta.
In the past year I have been a part of a drug trial that unfortunately was unsuccessful. I have participated in research studies for early detection of ALS systems in the brain. I am on all the ALS medication. Otherwise I remain on IV infusion of Radicava and oral Riluzole along with a medical cocktail that could put down a horse. All of those extras keep me from laughing at a funeral, crying at a kids movie, and keeping my T-Rex arms at bay. (insert t rex and laughing emoji)