My ALS Challenge

I started this blog to share my ALS journey and raise awareness of what it is like living with this disease.  My goal is to share both the positive and negative sides. Regardless of what I share, one thing is true: everything had to be re-prioritized and re-thought the day I received my diagnosis – good, bad or indifferent. 

The Lemons

Why am I saying this?  Up until mid-November, it was dealing with the progression of symptoms such as fatigue and decreasing fine motor skills.  Yes, those are challenging to deal with.  I had to change the utensils I use to eat.  I worked with the Occupational Therapist to order a wheelchair from the ALS Society of Canada.  These are all progressive and adaptive things.  They were somewhat within my control.

In mid-November, I fell.

I knew this was something that would happen at some point, though I imagined I would trip while walking.  Nope, that’s not what happened.  A delivery came to the front door.  I went and collected it, closed the front door, turned around and next thing I knew I was laying on the floor in a heap. 

I had no chance to even prepare myself.  And it was scary.

It happened so fast. My wife was standing less than 10 feet away and she didn’t have time to react.  The good news: I was inside, and I did not get hurt.  It did take a couple of days to get over the shock, but it was definitely an eye opener.  It also made me realize how weak my right ankle really is.

Time to Create a New Batch

The following week, though, the wheelchair arrived. Needless to say, I wasn’t going to go out walking, but now I had a new ride! I went from feeling my world had shrunk to being opened up again.  Of course, my wife said, ‘Let’s go for a walk’.  Well, time for our next experience!

The wheelchair has a seatbelt.  Why does the wheelchair have a seatbelt, we asked each other.  We shrugged our shoulders and I proceeded to sit in the chair while my wife started to push me along the sidewalk.  Apart from being a bit bumpy, it was pretty good.

We came to the end of the sidewalk at the bottom of our street, crossed the street and, with a bit of effort, my wife pushed me over the little curb to continue along on the other side. 

Then we reached the next street. No problem.  Down we go.  Cross the street, then, stop. The curb on the other side was a little higher so my wife couldn’t quite push me up.  Up to this point, we had been chatting away and enjoying our first walk outside in a while.

‘That’s okay’, she said, ‘I’ll take a running start.’  She backed up 3-4 steps, then started pushing until we hit the curb again and the wheelchair came to a dead stop… but I kept sliding in the seat, just barely staying in the wheelchair. 

So, that’s what the seatbelt was for!!!

All was good, and my wife figured out how to tilt the wheelchair up to get over the curb. 

We belly laughed for the rest of our walk.  It was probably the hardest we laughed in over a year.  Needless to say, I know what the seatbelt is for, and I wear it.

The Lemonade is Ready

This brings me to the end of November and appointment at the Sunnybrook ALS Clinic.

It has been one year since being diagnosed.  During the appointment, we were told that my symptoms seem to be progressing slowly.  What does that mean?  Hard to say, if symptoms progress at a steady rate, then that is a good thing.  But only time will tell.

We also met with the Occupational Therapist, as the Neurologist wanted me to be

assessed for a walker – to be provided by the ALS Society of Canada – to provide more stability than the cane that I currently use.  We also told her about our wheelchair experience.  After we all stopped laughing, she asked, ‘Did you consider turning around and backing up the curb?’ 

Doh!