My ALS Challenge

When I was diagnosed with ALS, I was told to keep exercising to maintain my mobility, albeit in moderation.  So, my wife and I started looking for fitness programs that catered to ALS patients.  I was seeing a trainer that was only a 10-minute drive from home.  But, due to my drop-foot, after each workout it was getting harder to drive home so that stepping on the accelerator and braking was starting to become a bit of a chore.  Even after what would be considered fairly light workout, I knew this would not be a good long-term solution.

So, never one to sit back, my wife and I went on the hunt.  In our community of Whitby, Ontario, there is a facility called the Abilities Centre.  This facility was established through the efforts of the late Honourable Jim Flaherty and Honourable Christine Elliott.  It opened in 2012 to provide programs and services for people with disabilities in Durham Region, and across Ontario and Canada.

It is here we started our search.  At first, I tried ‘gentle yoga’.  So, ALS has not done any favours for my balance and after my first session of gentle yoga, I realized this was not for me.  Was there anything else?

My wife was looking at the specialized programs and noticed one.  “I think this one would work.  Talk to them.”  The program she was referring to is called TIME^TM which was developed by the University Health Network Toronto Rehab Institute “for people with a range of neuromuscular conditions such as stroke, multiple sclerosis, or acquired brain injury”.  Okay, it didn’t say ALS, but why wouldn’t it apply?  So, I contacted the program team at the Abilities Centre to see if the UHN TIME^TM program was right for me.

I sent an email and got a reply within a few hours.  I mentioned I had a diagnosis of both ALS and Parkinson’s.  Would this program be good for me to help maintain mobility for as long as possible?  It turns out that I was the first ALS patient that had ever enquired about the program but, after a short conversation, they felt there would be a benefit and for me to have a referral form completed by my health care team.

A few days later, I had discussed the program with the care team at the Sunnybrook ALS Clinic, had the form filled out and an assessment scheduled to ensure I would be able to physically complete the activities.  This happened back in May and participated in the summer session throughout July and August.

So, was it helpful?

Short answer: Yes, absolutely!

So, why was it helpful?  Everyone who participates will have different reasons, but for me, they are as follows:

• A set of targeted exercises to help maintain my mobility;
• A low participant to instructor ratio to help ensure exercises are being performed correctly and safely;
• Contact to a peer group that I otherwise wouldn’t have had access to; and
• Structure to my exercise schedule and motivation to get outside.

As I mentioned earlier, I am the first ALS patient at the Abilities Centre to participate in this program.  Other participants have experienced stroke or other traumatic brain injury.  But we have formed a camaraderie, and we support each other.  This would never have happened by me staying at home and trying to exercise on my own.

To have this program facilitated by trained kinesiologists.  Even better.  How good?  I signed up and have just started the Fall session.  A perfect complement to help prepare me for the start of my virtual mobility challenge!

I have found the TIME^TM program to be beneficial for me.  If you are an ALS patient, your symptoms or progression may be different than mine.  If you are looking for a program and think this may help you, please consult with your health care team first.