I am honoured and humbled to be chosen as the ambassador for “The Walk To End ALS 2021” and to be able to share my ALS journey, with all of you.
My journey began in July of 2017, that’s when I realized that after many frequent falls, weakness in both my arms and legs that it was time to see my doctor. After all the testing that is required for a diagnosis of ALS, the day had finally come, on March 9th, 2018. I was relieved to finally get the diagnosis of ALS, a diagnosis that I had known in the back of my mind all along.
You see, I have Familial ALS. Familial ALS happens through inheritance, it occurs in 5 to 10% of ALS patients. I have had two brothers pass away and now my niece has also been diagnosed. When I received my diagnosis, I was flooded with the feeling of sadness and urgency to fulfill things I had been putting off. It was now, that with clarity, I knew what my body needed and what my heart wanted.
Well now I was ready to start this new chapter in my life, I was determined to live my remaining years filled with positivity and resilience.
My first step was reaching out for help from the ALS Society of Alberta. They made me feel special and gave me confidence that I didn’t need to worry about any challenges there were in front of me because they would be there. They were just a phone call away from assisting me in my needs. As this disease progresses and as the loss of my mobility continues, there becomes more of a need for special equipment and the Society promptly delivers these items to my home.
Our coffee group meetings once a month are a great way to let our hair down and to meet other people with ALS. We often just talk about what is new in our lives, we talk about new therapies, upcoming clinical trials, family, and coping with hardships that we were experiencing. The best thing about the group is we are comfortable together. We are comfortable enough to feel and express our sadness and to cry and to tell a joke or two (there’s always lots of laughter). Now that COVID-19 is here we have had to go on ZOOM for our meetings and it’s been a different experience for all of us to navigate with our computers. But we’re all ALS soldiers and as soldiers do, we adapt to circumstances that are put in front of us.
The ALS Clinic has also been outstanding with the medical team being so helpful and supportive as we are navigating through this new change in our lives. I am so blessed with the positive attitudes of all these special people that fill my heart with acceptance and resilience. It’s also a reminder of the necessity to provide support and services for those battling ALS.
This year let’s all get out there virtually and raise awareness as we Walk To End ALS! As a village, we can do this and not one more person will hear those terrifying words “ALS”.
Let’s forever have HOPE (Heart Open Please Enter) that there will be a day where we can enter into a world without ALS. And as these pictures show, someday we all can throw that cane away.
Happiness is a journey, not a destination
