My ALS Challenge

Quality-of-life is a constant focus for people living with ALS. For me, as this disease continues to progress, my mobility is worsening due to my legs getting weaker and my balance continuing to be more compromised every day. This means that using my walker is restricted to short, controlled trips. Using the manual wheelchair helps but does create limitations as I am dependent on someone pushing me.

At my last appointment at the Sunnybrook Hospital ALS clinic, I discussed with the occupational therapist about a power wheelchair. ‘Great idea’, she said. We discussed options and where to test drive portable power chairs. She recommended a store near where we live that deals in mobility devices. After our appointment, we went and visited the store to see what kind of chairs were available. Apart from being easy to manoeuvre or it also needed to be lightweight enough for my wife, or anyone else for that matter, to lift in and out of our vehicle. We settled on a relatively lightweight chair made from carbon fibre that weighed just over 40 lbs, about 20kg.

One of the reasons we were pursuing this is because my wife had a conference in Boston that would be an opportunity both of us to also get away. My biggest concern was, if we use the manual chair how would we navigate the airport, our luggage and, when she was at her conference how would I get around. This is what really drove the decision to get a power chair. Thankfully, we were able to get through all the paperwork and order the chair which we took possession of two days before our flight was to leave.

Not having the chair would have been a showstopper but luckily everything worked out. Our next concern was how are we going to navigate the airport, especially with all the stories of people using wheelchairs and the challenges they experienced in the news recently. I must say that the support and assistance that we received both at the airport in Toronto and Boston was amazing! Shout out to Air Canada for taking the time to make sure all of my needs were met and also making sure the chair was properly stored. They even showed me a picture once the wheelchair was strapped in place once I had boarded the plane. I was very impressed.

When we got to Boston, apart from being tired, I knew I had to push my boundaries in order to occupy my time while my wife was attending the conference.

On the first full day there, I decided to go to the Museum of Fine Art. As it turns out it was only 1.5 km from our hotel. So, I decided to venture out in my new power chair and see what trouble I can get into – well hopefully not too much trouble. It was a flat trip to the museum that took about 20 minutes and all I needed to do was push the joystick.

When I got to the museum, I ended up spending about three hours touring around and looking at the various exhibits. When I got hungry, I was able to navigate to the cafeteria and grab some food. At that point I realized I was getting tired and should probably start heading back to the hotel, but not before I visited the Dali exhibit and stopped at the gift shop. By this time, I realized I was getting pretty tired and then I thought I have another 20 minutes to go to get back to the hotel! Okay better get started myself and off I went.

There were no significant challenges getting back, although at one point I needed to backtrack as there was construction on the sidewalk that I could not get around. When I got back to the hotel I was very, very tired. I got into the room, plug the charger into the chair and preceded to take a two-hour nap. Who knew riding in a power wheelchair could be so exhausting!

The next day I was still very tired and decided Tuesday in the hotel to rest. That evening though, after my wife had finished conferencing for the day, we went out for dinner and decided to go visit Cheers. By the time we got there I was ready to take a nap again as riding over the cobblestone sidewalks was both very bumpy and painful. We did not go into the bar but we did take a picture to show we were there. I even got a T-shirt to prove it!

The next day, we continued our adventure going whale watching. That was an experience! The boat was a big catamaran that was wheelchair-accessible, and I had only minor difficulties navigating the dock to board the boat. The ride out to where the whales were affected a lot of people and the staff had to put out stacks of barf bags. Luckily, I did not up to use one. Whew!

We had a great time well watching and got back in time to pack up and go to the airport to catch our flight home. We flew back on the Saturday and, thankfully, I had taken the following week off because I definitely needed to rest up.

Although I had concerns of travelling while being dependent on a wheelchair, the trip proved to be quite enjoyable and relatively straightforward. It was a good test run and definitely helped to provide the confidence and assurance that doing a bigger trip would now be possible. I had heard the term wheelchair-bound often, but I was anything but bound. I’d like to think of it as now, having my power wheelchair so I don’t need to rely on others, I am wheelchair-enabled!

Hey, I wonder if I could do a 10K, or even a marathon, in my power wheelchair. I wouldn’t go very fast, nor would the battery last the whole race, but that’s just one more obstacle to overcome. I’m sure running a marathon in a power wheelchair would be a lot easier than the traditional way of running.

Of course, I would need to modify my chair. Should I add flames or racing stripes??? Something to think about!