TORONTO — A benefit concert will be held at Holy Blossom Temple for the Friends of Stephen Rivers Care Project, and to support research into multiple system atrophy (MSA), a degenerative neurological disorder.
Stephen Rivers, 64, a Toronto psychologist originally from Ottawa, was diagnosed with MSA three years ago.
As his illness progressed, friends of Stephen and his wife, Lindi, 53, a cantorial soloist at Holy Blossom, began providing cooked meals for the family – Stephen has a 23-year-old son, and together the couple has two daughters, 19 and 16. Friends also began staying with Stephen when he could no longer be left alone.
Lewis Molot, a professor in the faculty of environmental studies at York University, said the group of friends started the project last summer “when we realized how exhausted Lindi had become providing many hours of personal care.
“We wanted to help Steve, but we also wanted to ensure that Lindi remained strong enough to manage Steve through his illness, and still have something left for herself and her daughters.”
He said that Lindi and Stephen’s friends from around the world have rallied, and have raised money for in-home personal care and physiotherapy equipment.
Lindi said that although Stephen was officially diagnosed three years ago, there were “soft signs” for two to three years previously.
They were shocked with the diagnosis, she said, “and we went through a period of grieving. Now, we are coming to terms with reality. Stephen said, at first, the diagnosis was worse than cancer, because at least with cancer there is a treatment plan. He only has symptom management.
“It started with a lack of balance and with some voice issues. We noticed he had trouble singing at the Shabbat table,” Lindi said.
“Since then, it has been a process of adaptation. He started with a cane, but he had lots of falls. Then he tried a walker, and now he is in a wheelchair because his legs are getting weaker and weaker.”
Stephen said that another symptom of his disease is “emotional incontinence. My emotions are right out there on my sleeve. I’ve always had a sense of humour, but now things seem extra funny, or on the other hand, extra sad. I’ve tried to keep my sense of humour but it is getting harder and harder.”
They are both very frightened, he said. “We don’t know from week to week what the next challenge will be.”
Lindi said that what has helped the family to keep going is the outpouring of support from the community. “Friends, the Holy Blossom community and our family have been unbelievable with meals and funds to help with Stephen’s care.
“As Steve’s illness progresses we have to keep adding help. We are eligible for only 14 hours a week of help from the Community Care Access Centre.”
She said when they were approached about the concert, they were initially hesitant, “because it put us in the spotlight. I realized though, that so many people want to help but don’t know how. This is a good vehicle.”
Their one condition, Lindi said, is that part of the money raised at the concert be earmarked for research into MSA, through the movements disorder clinic at Toronto Western Hospital.
For information about the Friends of Stephen and Lindi Rivers in Concert, on June 2 at Holy Blossom Temple, 7:30 p.m, call 416-789-3291.