Living with Spinocerebellar ataxia type 2

By Allan, Spinocerebellar ataxia type 2, Canada, October 3, 2018

Rowley Potrait

Hi, my name is Allan Rowley. Thanks for taking the time to read my story.

I’ve started a GoFundMe campaign because I suffer from a condition with no known cure. It’s a disorder called Spinocerebellar Ataxia Type 2. Unlike other diagnoses, there is no provincial or national society in place for people with movement disorders and who may require advocacy for equipment or financial help.

In the simplest of terms, this condition affects my coordination - specifically my gait and balance, as well as my hands, speech and eye movements. In the past these movements used to be automatic, but I now need to think about every step and this can change in different environments. This made my job in the plumbing trade impossible and I was forced to retire in 2012 at the age of 41. 

I now move with the assistance of a walker, and will eventually require a wheelchair and help with daily tasks such as eating. 

I’m no longer able to participate in all the things my family and I love doing - camping, hiking, mountain biking, and playing hockey. The camaraderie of sports is now gone from my life, and socializing has become difficult as I struggle with thoughts of self-awareness and the desire to lead a “normal” life. Even seemingly simple things are a challenge - things like setting the dinner table, driving, and typing on a computer.

As I’ve come to terms with my diagnosis, I now have an eye on the future. Despite our best efforts and planning, my wife’s earnings and the savings we have amassed are not enough to sustain our four-person family. Soon, there will be immediate costs to help me maintain strength and endurance to prolong my independence and mobility.

But we have bigger mountains to climb - such mountains as modifying our home and vehicle for accessibility, my future personal care costs, and our daughters’ education and well-being.

My family and I have a long road ahead of us, and I wouldn’t be as healthy and happy as I am now without them. Your generosity will help pave the way.

- Allan.

Allan Rowley - Me, My Diagnosis & My Family
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