Hi! I’m Colleen Olson, and I have been an ALS warrior since my diagnosis on June 11, 2021.
My pre-ALS life was crazy busy and physically active. I completed a half marathon the year I turned 50 and normally walked at least 5 km daily with my dog Obi. I initiated fitness challenges at work,
competing against others who were mostly 15-20 years younger than me. The beast that is ALS started to change my life’s journey with symptoms starting the summer of 2020 – I just didn’t know they were symptoms of anything, never mind ALS.
Looking back, I can identify a number of symptoms that showed their faces in the summer of 2020. There was the extreme cramping in my left leg, which often woke me up at night. I explained it away as a lack of magnesium or dehydration. The muscle twitching in my abdomen, which I found odd but ignored. The sharp pain I got when I occasionally lifted something heavy, which I thought might be a hernia but was really my core muscles spasming."
In late August 2020, I was walking my dog with a friend and fell when my dog did a hard jerk on the leash. I got up feeling foolish and continued the last kilometer of the walk feeling fine. The next day I was walking down the street to my neighbours and realized that I was not walking normally. To make a long story short, the limp got worse and, by February 2021, had turned into foot drop. The road to diagnosis started in March 2021 with physio visits, MRIs, EMGs, and finally the visit to the neurologist who confirmed what I already believed (the physiatrist’s report indicating possible Motor Neuron Disease was all I needed to research what was going on).
So, I have ALS, what next? Having so much to think about caused an inability to sleep. I could not focus at work and left on disability within two weeks of the diagnosis. My husband, who was working in BC at the time, retired about a month later so we could spend more time together. He is an amazing guy who does everything he can to make my life wonderful.
Next were appointments, appointments, appointments, lots of appointments! There are the ALS Clinic’s multidiscipline appointments, where I see six or seven medical professionals, who all take great care of me. Infusion appointments, ten days each month to receive one of the progression delaying drugs. Appointments for the drug study I am able to participate in, and finally, the appointments for the two research studies I participated in. At first, all of this was overwhelming, but once we got into a routine, it did not seem so bad. I have met so many wonderful people through the appointments.
Over the past couple of years, we have taken a couple of vacation trips. We have gone on one to Niagara Falls, one to Vegas, and we have a cruise to Alaska booked for this coming July. Careful planning for my needs before we go has made the trips go smoothly. These trips are wonderful, but the best times leaving our home are to see family and friends.
We are blessed to have five wonderful grandchildren, and another on the way! These little humans bring me so much joy. We are also blessed to have extended family who have made visiting me a priority. In the summer of 2022, we had most of my sisters and their families come for a family reunion. It made my heart so full to have us all together having fun. Having an active social life with wonderful friends who either host or come to our place for coffee, dinner, or game nights is also incredible. All of this personal contact is medicine for the soul, and I am very grateful that so many bring sunshine to my life.
Last summer, I was overjoyed to be able to go for walks again, as the ALS Society of Alberta loaned me a Colibri power scooter. What a difference being able to get out on the trails I used to walk made to my days. The fresh air and being able to go with my husband when he walked our dogs really helped my state of mind. I hope that I am still strong enough to do it again this summer!
The scooter is not the only thing I have received on loan from the ALS Society of Alberta. Since registering in the fall of 2021, I have also borrowed a wheelchair, a platform walker, and a porch lift. The equipment loan program really helps keep out of pocket costs down, and I am very thankful that it exists.
The ALS Society of Alberta has provided me with so much more than equipment. The Client Services Coordinators have also provided me with support over the past year and a half. They are very special people who like to learn about you individually and remember what is going on in your life. I regularly attend the ALS Support group for those diagnosed with ALS. The Society organizes this group and it has been something that I look forward to both for information from other patients and for fellowship with people who understand what I am going through. The hour and a half, twice a month, meetings are a time where we joke and laugh but also cry and support. The people in the group get to be like a family.
Since my diagnosis, my mantra has been, “Nobody is guaranteed a tomorrow.” Some may think that having a mantra like that is morbid, I believe that the phrase is all about living your best life today. This does not mean that I don’t have sad moments, I definitely do, but I am a practical person who is thankful for the abundance of blessings that I have in my life.