Hello, my name is Graeme Drysdale and my road to being diagnosed with ALS started in early 2022. I would wake at night with severe cramping in my feet and calves, and my stomach would tighten up whenever I would bend over to tie my shoes. I later noticed some soreness in my left foot when walking to work and not being able to move as fast when running. I chalked this up to being 45 years old and not drinking enough water or stretching. My left foot soreness progressed over the coming months, and I started to walk with a slight limp. On August 10th, I read a news release that told the story of Börje Salming and his ALS diagnosis. I closed the door to my office and decided to do a little research on what the signs and symptoms of ALS were. I was shocked to learn about ALS-related drop foot, muscle cramps, and muscle spasms (fasciculations)… all of which I had. The realization that I possibly had ALS sunk in, and when my wife saw my face later that evening, she knew something was wrong. I was able to see a neurologist within a week and then spent the following week in the Foothills Hospital waiting for an MRI, EMG, and other diagnostic tests. It was a difficult time, and I was unfortunately diagnosed with lower lumbar onset ALS. I let my manager know the bad news and stayed up late many nights with my wife trying to figure out how to tell our two young children that their dad had a terminal illness. I struggled with an inability to sleep, depression, and hopelessness.
My amazing wife, family, close friends, and co-workers got me through the next couple of months until I felt like I could breathe again. I now have foot drop in my right foot, a loss of muscle/strength in my legs and my hands cramp up frequently. Stairs are very difficult to navigate, and I typically walk with an ankle-foot orthosis and a cane. My lifestyle has changed, but I’ve chosen to focus on all the positives in my life. I can no longer actively participate in my kids' sports, but I can still cheer them on and volunteer in other meaningful ways. I had to step away from a rewarding career, but have an opportunity to pick away at my bucket list. Hiking in the mountains, camping, and playing hockey (some of my favourite activities) are too difficult, but I can still travel, sit in the sun, and visit with the people I love. I have bad days and know there are going to be difficult times ahead, but keeping a focus on the present has really helped my mental health and enabled me to be thankful for the memories I get to create each day.
I’m extremely lucky to have an outstanding support system around me. I could write pages on everything my wife and children have done for me in the past 9 months, and I would not be here without them. My employer has been so supportive and has gone out of their way to help me and my family out. We have amazing family, friends and neighbours who are always checking in and keeping things light and fun. The ALS Clinic at the Calgary South Health Campus and the dedicated team there are true professionals, and they make going through this process as worry-free as possible.
I’m thankful that I live in Alberta and have the support of the ALS Society. Karen Caughey and Michelle Savard organized a Flames game for my family, and we had the absolute pleasure of meeting Michael Backlund. We have also utilized the ALS Society’s Support for Champions program that helped fund my children’s hockey and swimming activities and a recent research update which was extremely valuable. I also had a motorized chairlift installed in my home that was 100% covered by the ALS Society.
My plans for the future include participating in Betty’s Run for ALS this June, more travelling, and creating as many memories as possible. We are going to try and stay in our two-story home and will be making some home renovations to accommodate a wheelchair. I’m also looking forward to a couple of fishing trips this summer and teaching my soon-to-be-teenage daughter to drive.
Working with the neurologists at the ALS Clinic, we decided to start taking two medications to slow the advancement of ALS; Riluzole and Albrioza. I’m also in the process of applying to take the new pill form of Radicava. I have not yet participated in any other drug or treatment studies as I’m focusing on getting myself into a good routine and feeling my best before adding anything else to my treatment plan.