My ALS Challenge

January was a challenging month.

After a good December where I kicked off the start of my virtual ride across Canada, I was ahead of the pace I set for myself having completed almost 642km of the 7,480km total distance. Not only that, we were able to have a family get-together between Christmas and New Years, with four generations present. It was quite exciting – tiring but exciting.

January started off well. I was able to ride 5 of the first 6 days and then everything came to a halt as I had another fall. After my first fall, I didn’t hurt myself. After this one, though, I did hurt my right foot, which is the one most affected by ALS. I wasn’t wearing my ankle-food orthosis (AFO) as it was a Sunday morning and my wife and I were having our morning coffee in the kitchen. Would it have made a difference? Maybe. But, it was done.

After about 1 week, I felt I could start riding my exercise bike again. There was another problem, though. My hands. To be precise it was my hands, wrists and forearms. They really started hurting. But it wasn’t because of the fall.

Earlier, I had said December was good. One thing I had started noticing was that I was having more difficulty with my hands. I enjoy cooking, and especially making the full turkey dinner at Christmas. I started noticing, though, I was having more difficulty doing anything in the kitchen. This was carrying over to everything: cutting food while eating, washing myself while in the shower, typing an email at work or holding a pen or pencil.

The fine motor skills have been going for a while, but lately it has gotten painful. My hands and arms will cramp up and I will have to massage them until the cramping goes away. The aching stays around though. Sometimes it will take a day or two for it to go away.

So, January may have started off well from a riding perspective, but it quickly went downhill, and carried into February as well. It is times like these that it truly hits home that ALS is degenerative, there is no getting better, and there is no cure. It is also a time when I remind myself, and those around me who support me, and are in this fight with this terrible disease with me, remind me that these are just more lemons to make into lemonade.

So, this batch of lemonade required me to channel my inner MacGyver to figure out solutions to make things easier, some of which I had already been using. Here were MacGyver’s favourite tools: Duct tape, paper clip, toothpick, chewing gum in a tinfoil wrapper and a piece of string.

First, for my AFO, I had been having difficulties with the velcro straps. To help with this, I took some tape and put it over the ends to give me something to hook my fingers under. Apart from reduced dexterity and fine motor skills, when my hands cramp my fingers will curl. This way, I can now remove my AFO regardless of how my hands are behaving. First challenge complete.

Second, my wife had gotten me a satchel bag to carry around instead of trying to reach into my pocket. In order to get at my keys when we go out, we attached them to a stretchable lanyard. I no longer need to worry about dropping keys and I can always find them. Challenge two complete.

To address the issue regarding my exercise bike which was putting pressure on my hands and forearms, I went to the local home improvement store and got some plumbing parts to build risers for the bike handles. I supervised while my daughter and a friend did the physical work. Now I can ride with no pressure. Challenge three done!

I may not have used all of the MacGyver ‘tools’, but one thing is for sure, those lemons didn’t stand a chance!

Now I am able to continue riding with less pain. As of February 9th, I have completed 1,242km. Only another 6,238km to go as I continue to raise awareness about this disease and raise funds for the ALS Society of Canada.