John: Getting by with a little help from his friends


John has always had a positive outlook on life. For many of those living with ALS, the diagnosis can often bring a shift in perspective in what is meaningful and important. For John, it simply reaffirmed the way he has always chosen to live.

John is a 63 year-old retired animal and agriculture research worker who, prior to his ALS diagnosis, led a very active lifestyle. Not only was he active physically, he was also active in his community, singing regularly in his local church choir. He noticed his first symptom of ALS while he was singing in that choir. He began to feel a slight tremor in his abdomen, which he mistook for the common cold. Over the following months, John started to notice changes in his balance and difficulty in zipping up his clothing, due to a weakness in his thumb. As someone who had always been athletic, John was very aware of his body and knew something was wrong, so his ALS diagnosis was a confirmation of what he had already suspected. His mother passed away from ALS, so he was aware of the signs and symptoms associated with the disease.

John is “humbled” by the disease and acknowledges the blessings he has in his life despite the rapid progression of his condition. “I would qualify my support as ‘amazing,’” he notes. “My wife, my daughter, my brother, my neighbours, my wife’s family…everyone has been amazing. There are very few days where I don’t have someone visiting.”

John and his family will be participating in their local WALK for ALS this Saturday, June 3. As a self-proclaimed “large” man (6’2 to be exact), John will require a lot of support to get to the WALK. His sister in-law and brother in-law are bringing a van to help transport him to the location. Due to his weakened diaphragm, John struggles to breathe in the confines of a low car. A wheelchair and a ramp will also accompany him, but he plans on walking as much as he can with the support of his walker.

Despite the difficulty he will face leaving his home for the WALK, John stresses the importance of getting out, talking to people and sharing experiences. John’s best advice?

“Live each day. There will be good days and bad days, but do your best to do what you can while you can.”

Through ALS Canada’s equipment program, John has accessed a sit to stand chair, a superpole for his bathroom and a shower seat that helps him to bathe independently.

During the month of June for ALS Awareness Month, we will be sharing the stories of people living with and affected by ALS who have chosen to seize each day in whatever way they can. You can also share your own stories and reflections on Facebook, Twitter and Instagram and hashtag #SeizeTodayALS.

Posted in: Stories