Hi, my name is Rob McCaffrey, I was diagnosed with ALS in July of 2022. I’m honored to be the 2024 Edmonton Walk Together for ALS Ambassador.
It’s hard to tell when exactly my symptoms started; they were extremely subtle and not very consistent, but it could have been as far back as 2018. My speech was the first thing I noticed; talking a little slower than normal.
I decided on my own to see my doctor who arranged a neurologist's visit to see if there was a reason this was happening to my speech; the outcome had no red flags, and nothing looked abnormal. So, I continued my daily life, I was a semi-retired 63-year-old locomotive engineer, and besides having a heart attack in 2017, I was relatively healthy.
Over the next couple years, friends and family started to express concerns about the changes they were noticing in both my speech and mobility, those close to me were starting to really worry. I went to my family doctor a couple of times over the coming months, and only after asking again, was I referred to another neurologist. What followed were many tests; blood tests, electromyography tests, brain scans, and MRI scans, which led to an initial diagnosis of PLS (Primary Lateral Sclerosis).
As weeks passed, my speech continued to worsen, along with my mobility; my right foot had started to drag as I walked, causing me to trip and sometimes fall. After a couple of bad falls at work, I had to make the difficult decision to fully retire. The decision was heartbreaking, I loved my job and all the people I worked with, but operating a steam engine with public safety to consider, I knew I couldn’t continue.
Shortly after my initial diagnosis of PLS, I was re-diagnosed with ALS in 2022, a diagnosis that devastated everyone. ALS was scary & unknown; many of us knew little about it, and even fewer knew someone who had lived with this disease. We were put in contact with the ALS Society of Alberta, they got straight to work on assessing what was needed right away. So far, I’ve been provided with a porch lift, ramps, a hospital bed, lift supports & a mobility chair, allowing me to stay as independent as I can, and in the comfort of my home to be cared for by my wife & family.
The ALS Society of Alberta has been an incredible support for me and my family since this journey started. Their empathy, compassion, experience, and connections have helped immensely and are invaluable for families dealing with this disease. Please consider donating to fundraisers like the Walk for ALS, the funds raised are crucial for research, and providing much needed equipment for people like me.
Each year there are an estimated 400 Albertans living with ALS, and more than 200,000 people worldwide.