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  • Writer's pictureALS Double Play

Living through COVID19 and ALS

We first introduced you to our friend Mark last year. Mark was diagnosed with ALS on October 31, 2013. He was strong and vibrant, a store manager who loved eating pasta, and quiet nights in watching tv and sports.

Mark has now lived with ALS for seven years. Mark, his wife Asmaa and their daughter Veronica live in the Greater Toronto Area. Mark relies on round the clock care, his wheelchair, his computer to help him communicate and browse the web and the love of his family and friends.

While we really wanted to visit Mark in person, due to COVID19, we converse with Mark via messenger.

When you ask Mark how he’s doing, his answer is always, “good” or “well”. I am always impressed with Mark’s positivity and his amazing outlook on life. This time when I asked how he was doing he responded, “I feel blessed to wake up every morning.”

How beautiful! How many of us take time to be grateful just to wake every morning?

I asked Mark how he was doing through COVID19, what he and his family had been doing to keep safe, and how he was coping.

Mark’s biggest fear about COVID19 was his inability to recover if he somehow caught the disease.

Mark has had a tracheostomy that helps him breathe. It would be devastating for him to become ill with COVID19.

Mark and his family have stayed home for most of 2020. He says that he has probably only left the house five times since March.

So while many of us explored the great outdoors this summer, or took up a new fun sport like cycling, the best Mark was able to do was go for the occasional drive with his family. It is, after all, all about keeping Mark and his family safe and away from the illness as much as possible. Going for a drive allowed Mark to see the world a bit and enjoy the sunshine.

So how does Mark fill his days?

Mark uses his computer to see what is happening in the world. He likes to keep up with what’s new and makes plans to follow up on new tv shows or the latest news stories. He also likes to play poker online; he says it makes the time pass faster.

When I ask Mark why it’s important to him that people donate to ALS he responded, “ALS is not a disease that gets a lot of attention. It would be great for people to donate because the disease needs help.”

Mark would also like to see a cure for ALS. One of his hopes is for all world governments to focus on finding a cure for ALS, after all, if they were able to come up with a vaccine for COVID19 in less than one year, think of the possibilities for ALS…

Donate to this year's GIVINGTUESDAY campaign today!

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