My ALS Challenge

The last several months have been challenging. December 7, 2024 marked my two year anniversary confirming my ALS diagnosis. I knew it was coming, but when it actually came, the reality of it hit home. I was now entering that dreaded 2-5 year window that 80% of ALS patients do not survive beyond. Reality hits hard. 

Compounding this ‘anniversary’, I had to transition out of the rehab program I was in. I understood that the program was meant to help people improve everyday movement and mobility. For people living with ALS, all we can currently hope for is to maintain our mobility or, at least slow down its decline. I knew my mobility was declining and there was a waiting list to register, so my time had always been limited. The fact that it happened at the same time as my two-year anniversary was just bad timing. Finally, along comes winter. For those of us with disabilities and accessibility issues, winter can be a very trying time. The sidewalks become slippery and there are ever-present challenges of paths and sidewalks not being cleared, all of which impact the ability to navigate a wheelchair. in addition, the colder temperatures having a greater impact since we are not able to move to keep warm. Our need to rely on others to do pretty much everything is compounded since it becomes so difficult to get out.

During the COVID pandemic, we were all under lockdown. We relied on Amazon, grocery delivery and food delivery to survive. It was challenging, but we got through it together. We were still able to go for walks to get out, which helped alleviate the feeling of isolation and feeling confined. But the lockdowns ended and life transitioned back to normal.

For people living with disabilities, the lockdown continues. Except, this lockdown will not end, and for people living with ALS, as our mobility declines, the lockdown gets more restrictive as time passes, and the need to constantly rely on others to do everything increases.

So, needless to say, the last few months have been challenging indeed.

Having said that, there have been a few bright spots along the way. Earlier this month, one of my fellow ALS Canada Community Ambassadors, Lea Storry, published a book called ‘Speaking ALS’. This book is a collection of short stories written by people living with ALS, caregivers, and others associated with the ALS community. I had contributed one of the stories in the book, so I was very excited when it was published. The book can be purchased on Amazon via the following links and all proceeds are donated back to the ALS Society of Canada:

Paperback: $14.99 CAD: bit.ly/SpeakingALSbook

Ebook: $9.99 CAD: bit.ly/SpeakingALSebook

In June, ALS Canada has their Walk to  End ALS. I will be participating in the ‘Walk’ for a second year. Donations can be made using the following link: 2025 Walk to End ALS – Ontario : Andrew Dundas 

I am also continuing to speak about ALS at fundraising events. So, as I continue to deal with my own personal lockdown, as all people with disabilities do, I continue to look for opportunities to still contribute and raise awareness of what it is like living with ALS. 

Hopefully, one day soon, with all the great research currently underway and the grassroots efforts to help it continue, treatment options can soon be made available to help lift this ALS lockdown just a little bit. 

Until that day, I will continue to do my part to share my experiences and raise awareness.  How about you?