My name is Rob Markley, and I have Bulbar-onset ALS.
In February 2021, I visited my family doctor about occasional muscle cramping and twitching in my neck, lower face, and arms. He suggested magnesium for the cramping, but by early summer, the symptoms hadn’t improved. I had started slurring my words (and, no, this wasn’t from one too many beers). I was referred to a neurologist who ordered an MRI and Nerve Conduction Study. On September 14, 2021, I was diagnosed with ALS.
I was connected to the ALS Society of Alberta and the ALS Clinic at the South Health Campus in Calgary. Both have proven invaluable resources and provide a sense of community. The ALS Society of Alberta provided me with essential equipment, including a bidet, an adjustable hospital table, and neck braces that help with my day-to-day needs. More importantly, these organizations have helped us feel less alone.
After the initial shock of the diagnosis, I was left with more questions than answers. No one could tell me exactly what to expect, other than the hard truth that there is no cure, and that the average life expectancy is just 2-5 years. At first, my thoughts were consumed with how I would face my own pending death and how much of a burden I might become on my family. I still think about these things, but I now try to take life one day at a time.
Before the pandemic, I was very active, playing soccer and golfing a couple of times a week. When some of the restrictions were lifted, I considered returning to playing soccer. My lung capacity was still strong and I could still run. But after talking with my OT and PT specialists at the ALS Clinic, I realized the muscle loss in my arms put me at a high risk of injury. So, I gave up soccer. Then golf. Then driving. Then cooking. And so on, and so on.
I’ve volunteered for every research study offered to me. I participated in two clinical research trials, both of which were unfortunately unsuccessful. My wife Maria and I even donated spit, blood, and poop samples for a microbiome study. As I like to say now, “a couple who collects poop together stays together.”
Maria is my caregiver. She prepares and cuts up my food, helps with personal hygiene, trims my beard and even clips my nails. I haven’t needed a feeding tube yet, but I know that day will come.
Still, we have so much to be thankful for. My ALS has progressed more slowly than many others. Fatigue is a daily reality, but I am still mobile and my breathing is still unaffected. We’ve been encouraged by our ALS community to resist giving in to the disease, and to keep doing what we can and love, for as long as we can, even if it’s difficult.
In Spring 2022, we took a bucket list trip to Australia. That Fall, Maria officially retired and we sold our family home. We bought a new 2-bedroom condo with a large balcony so Maria can still enjoy planting her flowers, but does not have to shovel snow or mow the lawn. While waiting for our new home to be ready, we became nomads for 9 months, travelling and visiting loved ones often.
At this stage of our lives, we’re grateful. Grateful for our two amazing children, our wonderful grandson, and the most incredibly supportive and encouraging group of family and friends. Earlier this summer we participated in the 29th annual Betty’s Run for ALS. We’ve shared so many beautiful experiences and have many more to look forward to, including our daughter’s wedding this fall. Over the next few months, we’ll host visits from friends and family (I always tell our guests that Maria feeds me cat food, and I will never admit it isn’t true!), and take a few trips to the Okanagan and west coast.
Our motto these days is simple: Just keep doing! ALS may take a lot from us, but Maria and I choose to meet each day with shared humour, love, and deep appreciation for all that we still have and all that is still possible