I would like to pay tribute to a very special person, Dwayne Backer, who passed away on August 23, 2022 at the age of 83.
I first met Dwayne about 25 years ago on a garden tour with my husband, Richard, and we knew then that there was something wrong with him, but appreciated his incredible knowledge about plants.
A few years later, after I had been diagnosed with dystonia, a neurological movement disorder that causes muscles to pull or spasm, we were back in his garden, on another tour.
My husband recognized that perhaps Dwayne had dystonia. We chatted him up and sure enough he did.
As we were boarding the tour bus to visit another garden Dwayne handed out a leaflet to all of us explaining his condition. That was the first time that I saw him promoting awareness of dystonia. I invited him to a support group meeting and he and his wife, Pauline, came and he told us his story.
Dwayne’s dystonia journey, as told by him
After spending several years in the Royal Canadian Air Force (1957 – 1968), I started noticing the symptoms of what was later diagnosed as dystonia. I served in St. John’s, Que., Clinton, Ont., Uplands (Ottawa) Ont., Rockcliffe (Ottawa), Ont., Goose Bay, Nfld., Baldy Hughes, B.C., Metz, France and then North Bay, Ont., where I noticed the first symptoms of dystonia.
Debilitating muscle spasms and poor fine motor control prevented me from performing day-to-day tasks such as shaving my own face or writing a grocery list. I had a stiff neck which became progressively worse until my neck was bent down onto my shoulder. My condition worsened until I was unable to move at all.
After numerous examinations from doctors, I was finally diagnosed with dystonia, and underwent experimental brain surgery which, to some extent, finally succeeded in loosening my muscles. I met my wife, Pauline, while recovering in the hospital in my hometown of Mattawa.
We eventually moved to Sudbury, where I attended Laurentian University, graduating with a sociology degree in 1972. Because I was unable to control a pen enough to write, I taped my professors' lectures and took my exams orally.
I applied to positions in my field, but nobody would hire me because of my disability.
In 1974, I opened Dwayne's Smoke Shop on Durham Street, which I owned until 1998, when the land was expropriated by the City of Greater Sudbury to make way for a roadway leading to the YMCA building, which was then under construction. I thought I'd be retiring, but I found that there wasn't enough to do, and I wasn't ready to just stop working. I applied to Wal-Mart in April 1999 and worked there until I retired in April 2014.
As for coping with the day-to-day realities of dystonia, the neurotoxin treatments I receive in Toronto every four months to relax my muscles have helped somewhat. I also appreciate the support I receive through the Sudbury support group. It's comforting to know that there's other people with the condition and you don't feel alone walking on this earth. It always helps if there's someone that understands what you're going through and the feelings that you encounter.
I don't let my dystonia get me down. I try not to think of what I can't do; I try to think of the positives and what I can do. Yes, my dystonia prevents me from doing things, but I found other things to replace what I've lost.
Raising dystonia awareness
I met Dwayne at the time he was working at Walmart. I asked if he would like to help raise funds for dystonia research and he did. “Five bucks” was his mantra at Walmart with his associates. They, along with management sponsored him for the annual Dystonia Walk-and-Wheel. Then Wal-Mart donated a matching grant.
I remember one year Dwayne telling me that he wouldn’t be able to make as much money as he had the previous year, which was always his goal. He hadn’t been well and wasn’t able to get out to visit with his friends, neighbours and past business acquaintances to ask them for money, because Dwayne always liked the personal touch.
I suggested that he use the Internet to ask people for a donation. Well, he wasn’t comfortable with that. I said to think about it and he did and he did use the Internet and he brought in more money than the year before and was able to accomplish his goal. After that there was no stopping him.
Pauline says he would be up late at night well into the wee hours of the morning emailing people asking for donations. He took these pledges very seriously and one year he left his son John’s Stag and Doe at two in the morning so that he would be back in Sudbury to do the walk on time.
He was always very grateful for any amount that he received and wrote heartfelt thank yous in the newspaper to show his gratitude.
In the past 20 some years, Dwayne has raised over $117,383.18. On his 81st birthday he raised $2,095 through Facebook. For his efforts he has received the Ontario Volunteer Service Award and a Queen’s Diamond Jubilee Award.
September is Dystonia Awareness month. Dwayne would be thrilled to know that his legacy of raising awareness and money for Dystonia research was being carried out posthumously.
Donations can be sent to the Dystonia Medical Research Foundation by visiting www.dystoniacanada.org/dwayne.
For me Dwayne was the perfect example of someone overcoming incredible obstacles. Living with chronic pain, he always greeted people with a smile on his face. He was intelligent, determined, goal oriented, energetic, fastidious, funny, kind, a loving husband to his wife, Pauline, and a loving father to their son, John. Rest in peace, Dwayne.
Mary Guy is the leader of the Dystonia Support Group for Sudbury and District
