Lucinda William’s 2003 album has a song with the lyrics, “Everything is Wrong” on it. Being diagnosed with ALS a few weeks after my 65th birthday in January 2022 certainly left me feeling like everything was indeed, wrong.

A couple of weeks after the diagnosis, my husband Michael and I had our first clinic visit at Calgary South Health where we met our incredible support team. Although it was a bit overwhelming, we went away feeling like we had a group of caring people who would guide us through this difficult disease.

One of the people we met was Michelle, with the ALS Society, who explained how much support the Society would be along this journey. What an amazing organization! We’ve benefited from the loan of equipment to make our lives much more manageable, including a lift for our garage, a power wheelchair and a Hoyer lift. But the best benefit the Society offers is the twice-monthly Zoom meetings with fellow ALS patients. This group has taught me so much about living with ALS. I’ve met many wonderful people who raise my spirits and perhaps surprisingly, provide lots of laughs. Having the support of this group means so much to me.

So many friends have stepped up to offer their help and support both here in Calgary and in New Brunswick, where we’ve enjoyed our summer getaway for many years. And of course, I can’t say enough about my amazing family, who show their love and support every day. I never expected my husband to end up being my caregiver, but, not surprisingly, he has taken on the role with positive energy and love.

While we can’t control this disease, we can control how we deal with it. Every day seems to bring a new challenge, testing our physical and mental strength. Thanks to the incredible support of family, friends, the South Health team and the ALS Society, I remain positive and hopeful that a cure will be found.