My ALS Challenge

It has been a while since my last post. A big reason contributing to this is the increased pain I have been experiencing as I use my hands. Simple daily activities like brushing my teeth or using utensils has become more challenging. I won’t even get started on trying to open jars or turn doorknobs. 

As I’ve mentioned in the past, I have continued to work. I do so because I still can. But in my job, I am at a keyboard all day so, when it comes to typing, what were once simple activities can become long and painful. Writing an email may take 3 or 4 times a long. Not because I don’t know what to say, but because I am sometimes typing it with either one hand because the other hand hurts too much. Or, even using one finger because the other fingers are cramping up.

So, why do I keep doing this? Because I still can? Partly. But also because I am not ready to stop and I believe I still have so much to offer. Which brings me to another topic.

On April 27-29, ALS Canada held their annual ALS Research Forum. This forum brings together researchers, primarily from Canada but also some from elsewhere as well, along with Industry representatives and people living with ALS, to talk about the research underway in helping to find what causes ALS and potential treatments.

I was fortunate enough to be invited to attend this year’s forum as a person living with ALS and an ALS Community Ambassador. I was even more honoured to be asked by ALS Canada to say a few words regarding my lived experience to a group of early career researchers.

I did not know what to expect going into this weekend. Honestly, I was nervous. What would I say? How would I say it? Would it be interesting or relevant? I spent the weeks leading up preparing my notes. It was nothing that I hadn’t shared here but now it was personal.

When my wife and I arrived, the first people we ran into were ALS Canada’s CEO, Tammy Moore and the VP of Research, David Taylor. They warmly welcomed and thanked us for being there. Then we started meeting with other ALS Canada staff who I had previously met virtually, and who continued to make us feel welcome.

Shortly after, when we gathered in one of the meeting rooms with the early career researchers. The session kicked off and I was introduced to share my story. I started telling my story of how my diagnosis came about and the decision not to bury my head but to take the lemons given and make lemonade. I told them about my fundraising and my virtual ride across Canada, but also the daily struggles with my hands and mobility. The whole time they sat there, and listened, and acknowledged. I left the group with two thoughts. First, if they interact with people with ALS, especially if the person is just learning of their diagnosis, be compassionate. Second, while continuing the great research currently underway to help find the causes of ALS, also consider opportunities to improve quality of life while new treatments and, hopefully a cure, is found.

Throughout the rest of the weekend we saw presentations on all the great research underway. We got the opportunity to talk to biotech representatives. One company in particular, Biogen, has produced a drug called Tofersen that has had a positive impact on people with ALS who have the SOD1 gene mutation, which account for approximately 2% of all ALS diagnoses.  We talked to someone with a long family history of ALS who is taking Tofersen. This drug literally is a life saver.

What we learned about the research currently underway was incredible. What we also learned was the passion driving all the researchers, some of whom have a personal connection to ALS. It was incredible and deeply heart-warming. We left the conference having learned so much more about the research and the research community. We also met great people from ALS Canada, as well as awesome researchers and people living with ALS. It truly is a community, and one into which both my wife and I truly felt welcomed.

Even though it may hurt to type, and I get fatigued easier, I take inspiration from all the great work being done in the research world. I also take inspiration from the other people with ALS that we met. So, I will keep on going, knowing I am not alone no matter what lemons may be thrown our way. Who knows, I may even try and get out and try gardening, though it may not be a good idea to put sharp tools in my hands. On second thought, maybe I will just sit in a chair and guide others on what to do in the garden while sipping on a cold glass of lemonade while enjoying the sunshine.