In the first 44 years of his life, Cory Gallipeau was able to do what the other kids could as well. Cory has always been an active guy, engaging in many different sports. Recently, he started having physical difficulties and was diagnosed with spastic paraplegia 7 (SPG7). Cory tells us about his journey to find the correct diagnosis and how his changed life also changed his view on routine things in life.
I was 45 when I got formally diagnosed in May 2021. The specific type of Ataxia I have is called SPG7. This type was determined after two rounds of genetic testing. The first round examined eleven genes and no mutations were found. The second round looked at four hundred fifty-five genes and identified two mutations. Genetic material from my parents was requested to confirm a diagnosis. Since my mother was deceased, my father’s genetic material was analyzed and confirmed that SPG7 was the type I had.
For the first full 44 years of my life, I lived a “normal” life. I always did 99.9% of the things that other kids did growing up and never felt that I was too different or challenged.
From an early age, I always had more trouble with balance and coordination tasks than others did. As a youth, I played group sports – including soccer, baseball, and football. When I was in high school, I ran cross country and track and was on the tennis and basketball teams. After college, I continued to be active and hiked, backpacked, walked, rode my bicycle, and traveled to foreign countries. Things were never too noticeable or difficult or seemed like I couldn’t do most of what others did.
When I turned 45, coincidentally it was 2020, everything changed for me and the world. For a few years, I had noticed a gradual decline in my ability to do some physical IT tasks that were occasionally required of my jobs such as climbing a ladder, running cables, and other tasks. Some of these tasks required agility and balance that became difficult to perform easily such as navigating small, narrow, and tight spaces in an office environment. My cognitive and rational thinking skills were not and have not been affected. In July 2020, I was let go unexpectedly after 12+ years of service for COVID-related financial issues. While this was a heavy blow, it was completely unrelated to my condition, which hadn’t been diagnosed yet and at the time was unknown to both myself and my employer.
After a camping trip in Oct 2020, I was concerned to the point that I felt I needed to see a doctor. When on the camping trip, I was pounding in the tent stakes and missed the stake entirely with the hammer 4 out of 5 times. That’s when I knew something was going on. Upon returning from that trip, I mentioned it to my primary care physician who referred me to a local neurologist. The neurologist performed some coordination and function tests and then recommended an MRI be done in an effort to narrow down what was going on in my brain. He was able to identify that I had cerebellar atrophy and that I needed to see an Ataxia specialist as he wasn’t an expert in movement disorders.
Currently, I’m unemployed and am doing everything I can to try to stay active every day (including walking three miles a day and doing an hour of yoga a day). While I can’t recreate now at the same level I did before, I’m still able to hike and watch sports and root for my favorite teams and players. I have seen my condition decline over the past nine months and have noticed that some of the mundane, domestic tasks around the house have become more challenging for me including navigating through doorways, down halls, opening the fridge, walking downstairs, getting in and out of the shower, etc. I have become more unsteady, clumsy, unbalanced, wobbly, and uncoordinated in my movements.
My condition has taught me that every day is a gift and a challenge and to take life one day at a time. I have a new appreciation for the simple and routine things that I took for granted before and just performed but didn’t even think about such as walking and talking.
I have learned that it is important to accept the reality of a situation and what science tells us even though we may not like what we hear. It can be a disappointment to think of things changing when you had nothing to do with making the change happen in the first place.
One of my favorite sayings is “If life gives you a bunch of lemons, make lemonade!”. This philosophy has helped me to make the most of any situation that comes my way and not to get too upset with the cards you’re dealt in life whether you like them or not and to put on a positive attitude.
While I am disappointed in how my new situation has unfolded, I maintain faith and hope that one day, things will improve for people with Ataxia and that research and science will find a cure to this condition that strips away people’s independence and affects so many vital human functions.
Thank you Cory Gallipeau for sharing your philosophy and view on living with Ataxia!
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