My ALS Challenge

I have been asked seemingly simple questions but are really difficult to answer. For example, “What is it like living with ALS?” or “How I can help?”. Why are these so difficult to answer? Because I am still trying to figure out the answers to them myself.

I must start off by saying I am very lucky in that through my work benefits and my wife’s work benefits all my medications are effectively paid for. The ALS medications available will slow down progression – by months, not years. They are not a cure. ALS has no cure.

For many people living with ALS, this is not the case. Recently, several provinces in Canada have approved funding for these medications, but not all. The application process, however, is time consuming and, from experiences that I have heard and read about, it can be very time consuming. Time is a luxury that ALS patients do not have.

If I am to the answer the question honestly though, living with ALS sucks. Plain and simple. Every day there seems to be a new challenge to overcome, or needing to learn another way to do simple everyday tasks. Some days are tougher than others where I reach my limit, and sometimes exceed it, and I just break down and cry because my body will not allow me to do what I need to do.

Prior to my diagnosis, I never thought opening my front door or unlocking the mailbox at our community mailbox would be considered a complex task. I can do two of the following – grab the doorknob/key, turn the doorknob/key, pull – but not all three. I have adapted to checking the mail by bringing a bag to put the mail in, and having a holder for the mail key so I don’t drop it. The front door is still a challenge.

Fatigue is another constant. I can no longer do yard work or garden. Going for walks around the block are quite tiring and I need to stop 2-3 times to catch my breath. I am, though, able to ride my exercise bike with moderate effort. I guess it’s because I am not exerting myself to the same extent as I do when trying to walk. Stationary cycling is easier. I don’t know, but I keep it up. It keeps me going.

So, why am I writing this post? This seems more lemons than lemonade, doesn’t it? Well, yes, that may be true. But you need the lemons to make that lemonade. Every day is hard, I won’t deny that. At the end of the day, though, I will have finished my bike ride. I feel good about myself that I made it through another day. Today’s mission accomplished. Tomorrow’s mission awaits.