My ALS Challenge

Two years ago today, on December 7, 2022, I received confirmation of my ALS diagnosis. From that first day I vowed to take the truckload of lemons that had just been given to me and make the best lemonade possible.

I have faced many obstacles and challenges throughout my life, all of which made the decision to not let them define me and move forward to live the best life possible. With this diagnosis I made a different decision. I decided I would not hide my ALS diagnosis in order to move forward. In fact, I would embrace it and do whatever I could to learn more about ALS and raise awareness of this terrible, debilitating disease.

I decided I would write a blog about my journey and do a fundraiser to support research and awareness so others could learn more and understand what this does is like. So, one year ago I started off on my Virtual Mobility Challenge, virtually riding across Canada on my exercise bike the equivalent of 7500 km – the distance from Victoria BC to St. John’s NFLD. I started this ride on my first anniversary of my diagnosis and my goal was to complete this ride in one year. Little did I know the obstacles that I would experience along the way. These obstacles included such things as: constant pain in my legs and arms, cramping caused by this disease by using my muscles on a regular basis, and fatigue and balance issues which caused me to struggle to walk and move.  I sleep a lot more than I used to because my body is affected with every exertion. It has also taken a mental toll. I am constantly reminded that my body struggles to do activities that came so easy not too long ago. I also know that I have entered that window of 2 to 5 years where 80% of people diagnosed with ALS will die. I am not afraid of dying, but I will live every moment, struggles and all, to continue looking for ways to bring awareness, help with research, and advocate for a world free of ALS.

So, after one year, how far have I gone? I have completed about half the distance, around 3600 km. My original goal to complete within one year is gone. But I have a new goal: to complete this distance no matter how long it takes me. Why? Because I am embracing ALS and not letting it defeat me. So, maybe I will finish on my third anniversary, or maybe my fourth. Regardless of how long it takes I am not going to give up and I am not going to hide from this disease called ALS.

I think of Pat Benatar’s song, ‘Hit me with your best shot’. Even though this song is not about ALS or any other disease that matter I find inspiration in the following:

You come on with it, come on
You don’t fight fair
But that’s okay, see if I care
Knock me down, it’s all in vain
I get right back on my feet again

ALS will continue to knock me down but I will keep getting right back on my feet again. I this to myself and those around me to hopefully set a positive example that, no matter what struggles you face just get back on your feet again and keep going. So, come on ALS, hit me with your best shot. Fire away!