As a former business analyst, James is accustomed to planning for the future. He has lived with ALS officially since 2013, but his doctors believe he has had ALS for over 20 years. James has an exceptionally slow progression of the disease, which has given him time to do what he does best: plan for what’s to come.

James is an avid hockey fan and has been a goaltender since the age of 16. His symptoms first appeared whenever he tried to put on his chest protector and mask for a game – both pieces require the use of the upper body and James felt his arms getting progressively weaker over time, making it difficult to lift up his equipment.

“The last straw came in a game,” he says. “A younger fellow had ripped a shot at me. I threw out my glove hand to make the save. The puck did go in the glove; however my arm was just weak enough that it got pulled back with the force of the shot. The puck popped out of the glove and went in the net.”

After years of questions, James’s diagnosis was confirmed in September of 2013…something he considered to be a relief. While the news was difficult to wrap his head around, James says that once he knew what had been going wrong all those years, he could find ways to move forward and make adjustments along the way.

Everyday tasks like mowing the lawn, putting the dishes away or lifting a pot of water off the stove are now what James calls “adventures” that have required small changes. For example, the dishes are now on the counter rather than in the cupboards, and his wife has begun leaving things at waist level so James can access them more easily.

While he believes he is fortunate to have a slow-progressing form of the disease, James worries about the burden his symptoms will be on his family over time and the friends with ALS that will pass before him. Whenever he begins to dwell on these thoughts, James redirects his mind and reflects on how lucky he is to be able to watch his young sons grow up and “convince his wife to take over the finances,” he jokes fondly.

In his spare time, James produces two podcasts related to World of Warcraft. Last year, he coordinated his first 24-hour live-stream to raise money for his local WALK for ALS, which he and his family have participated in since 2015. They were able to raise $1,000 through this event. So far this year, James’ second live stream has raised over $3,000 and he plans to raise more in November by dyeing his beard purple to support ALS Canada.

In 2015, James was able to complete 4 km of his local WALK. In 2016, he did his part by handing out gifts to other teams. This year, he is planning on doing a short walk around the track and cheering on his family as they complete the 5 km on his behalf. These are just some examples of how James readjusts his expectations to adapt to life with ALS.

James stresses the importance of making the most of the time we have. He admits that when he was first diagnosed, he was very angry. “Being angry is okay,” he says. “But don’t let it rule your life. It will affect everyone around you. Deal with the anger and move forward so you can enjoy the time you have left with your loved ones.”

James continues to take his young children to school every day despite the progressive mobility challenges he faces. Instead of walking them to school like he used to, he now uses the scooter provided through ALS Canada’s equipment loan program, or drives the car. He tries to set the example that he is not defined by his limitations.

In addition to living with ALS, James has stuttered since he was very young. He used to be concerned with what other people thought about his speech. Now, he uses his two podcasts to overcome his insecurity, offer help to others with similar challenges, and focus on something constant in such unreliable circumstances. This is how James chooses to seize today.

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.

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