An ALS Experience – One Person’s/Family’s Story
By Pete Truch
The original diagnosis was a severe leaky heart valve, and it only went downhill from there. Add on only a sixty percent functioning lung capacity and then the pièce-de-résistance ALS, a terminal disease. When the good Dr. told me this news, my reply: “Doc, I find this very hard to believe, ‘cause I’ve never played professional baseball.”
At this point (August 2019), an incredible meeting of new people in my life took place, beginning with the fantastic respirologists who have breathed in new life for me; the neurologists who have given me a “slow-it-down pill” (Riluzole) – with our somewhat crippled health care the costs of which I have to pay myself (but I’m not complaining); all the staff and associated organizations at the South Health Campus in Calgary; and finally,the hard working team at the ALS Society of Alberta. From the latter group, Michelle Savard drew the short straw and ended up with me on her client list.
Given the short end of the diagnosis as “months”, we first had a family reunion, a living wake we called “Celebrate Life”. Attendance was so good, it required renting a hall and catering the meal, stocking the bar, and trying to accommodate all the “out-of-towners”. Perhaps the threat of “I’ll likely have to come back and haunt you if you don’t show”, had something to do with the super turnout…
Since my mobility was still reasonable, my dear wife (Doreen) of 48 years and I travelled to Orlando, where we met our son Peter and his two sons, Kai and Sasha. Between wheelchairs, a walker, and electric scooters, we spent all our energy over the next 10 days, riding the rides in the “happiest place on earth”. Sasha, 4 years old at the time, summed it up best when asked by a stewardess in Toronto what he thought of the trip - “Best vacation ever!!”
Enter once again incredible people – the Backlunds (Mikael and Frida). Frida had taken care of her Mom, Ann, through the duration of her ALS illness in their native Sweden. In Ann’s memory, through the Alberta ALS Society, Frida and Mikael have helped more than 80 families by providing game tickets, t-shirts and jerseys, all personally autographed by Mikael. After telling Mikael we would be at the game in Las Vegas in a couple of weeks, he rewarded us there with a game puck and an absolute priceless smile. Thanks again Mikael!
When I had mentioned the great walking distances in Vegas to Michelle, she asked if I could use a walker. Bang, the next day it was delivered! It was so handy in Vegas and has proven itself useful ever since. We continued our travels over the next few months in a back-and-forth between Calgary and Kelowna, until Covid-19 hit. A special thank you to our granddaughter, Danielle, who has looked after our Calgary house for us in our absence. That’s a lot of plants to water! We were in Kelowna when the shutdowns started and have spent the bulk of our time there since. The number of cases in this locale is very low.
Covid-19 created an opportunity for me that, due to travel, was not open to me before. I was able to attend my first support group session online. It was here that I was able to meet both Leslie and Rob, and have the occasional meeting with Michelle. The diversity of participants gave me a new perspective on this disease, coupled with the determination and resilience of those I’ve met.
Take Mike, for example, who is in his 13th year since his diagnosis. Mike spends his time inventing new help tools such as aids to putting on socks, shirts, taking showers, all without the use of your arms and hands which Mike no longer has use of. Incredible!
Then there’s Patricia, who celebrated her 50th wedding anniversary and still goes camping despite very limited mobility. There’s Peter, who is able to still take walks with his caregiver wife, but this is now a changing situation. There are many more people whom I’ve met once or twice online since we’ve all become the ultimate conZoomers.
Every day for me is a Giving Day. I give thanks that I wake up, thanks to my wonderful wife who has really been my caregiver since the day we were married; thanks for all my family and friends and thanks to all of the people who have helped me in this new journey.
Please help in this fundraising drive for the ALS Society of Alberta, which gives out so much of itself.
Thank you.