I was officially diagnosed with ALS in January of 2023. I had seen my family doctor for increased exhaustion, foot drop on both feet and a shaky jaw; a jaw so shaky that my dentist said he has never seen someone’s jaw shake so much, even in his clients who have Parkinson’s Disease.
Being a single mom of three teenage boys is in itself an ongoing challenge. Now, throw in a terminal diagnosis with a rapid progression- there really are no words to describe the new challenges we are facing. No longer able to work, no longer able to drive, needing help from my boys to do things that no child should have to do. This is our new reality.
I have been blessed to have my dear friend, Zen, commute from 3 hours away to care for me during the week. We always had a strong bond, now we are family. I am grateful to have friends and co-workers create a Go Fund Me page to raise money so my boys and I could take a trip.
I wouldn’t exactly call it the trip of a lifetime, but we did the best we could. Packing the car full of equipment - wheelchair, walker, raised toilet seat (very glamorous, I know), speaking with the hotel staff in advance informing them of my additional needs only to get there to find no additional accessibility. These are now the realities of our life. I tried the hot tub, which was great until I couldn’t get out as my legs would not work. We went shopping, but the aisles in the stores were narrow and difficult to fit my wheelchair through. But that is OK. We laughed at the hard moments, we joked about our new routines and we bonded as a family. This is all that matters.
Journeying through this horrible disease has made me and my boys re-evaluate what is truly important in life. We no longer take things for granted. Every time someone leaves the house there is an “I love you” shouted out. We enjoy having movie night two nights each week, two of my boys come home from school every day to have lunch, we now take family trips to Costco because it’s all hands-on deck. These “simple” things in life have become our best days. We laugh, we cry, and we support each other. The memories we have made are priceless.
My family doctor, Dr. Currie, has been a strong advocate for me and my needs. I am thankful to Dr. Johnston and the ALS team at the ALS Clinic for their unwavering support. The research team is truly amazing. The ALS medications I am taking have given me more time.
The ALS Society of Alberta is a gem. The equipment they have loaned gets delivered quickly and makes my days easier and safer. I get excited when I get a call from my Client Services Coordinator, Michelle. Her personable, supportive manner improves my mood and gives me hope. I do not know where I would be today without the Society’s guidance and support.
I do not know how much time I have left. What’s important is how I spend it. My boys are amazing, and I am grateful for the memories we have been able to make. I look forward to the ones still to come. There is nothing greater than the support, vulnerability, humour, and love of my family. They are forever in my heart.