Local photographer feels like she’s hit the jackpot - she’s been chosen to be part of MS study with her best friend
By Penny Coles
Posted 8 days ago
Niagara-on-the-Lake photographer Rachel Spiewak received the Christmas present she was hoping for—one that she is thrilled to be sharing with her best friend.
Her friend of almost 20 years, Dave Canzoneri, has been told he is one of 100 multiple sclerosis patients to be accepted as part of a McMaster University research project that will study whether the veins in his neck are constricted, and Spiewak will be part of the healthy control group.
The study is a result of claims of an Italian doctor who has been treating MS patients with angioplasty to widen veins in the neck. Although Dr. Paolo Zamboni has announced great success with the treatment, Canadian doctors have not yet endorsed his method, saying the treatment is still experimental.
But MS patients have been anxious to see studies carried out in Canada, and Canzoneri, who was accepted for the research project although more than 22,000 MS patients applied, says he feels like he has won the lottery—with no money involved, but possibly a return to good health as an even better prize.
When he first heard about the Zamboni surgery, like other MS patients, he felt like packing his suitcase and travelling to Italy or one of the other European countries which was offering treatment.
He's glad he didn't. His doctor convinced him that it would be better to wait to see if research in this country confirmed the findings, and if so, have the surgery reassured it would be safe.
"I'd rather see it done the right way," says Canzoneri.
Those accepted to the study were required to have a friend or family member also take part—one that satisfies certain health requirements—to be part of the control group. The study will also include patients with other neurological disorders.
Spiewak, who has watched her friend's health decline in recent years, is thrilled to have been accepted to be part of the control study.
The two will report to St. Joseph's Hospital in Hamilton Tuesday for MRIs and ultrasounds of the veins in their necks.
They hope that if the results back up Dr. Zamboni's findings, which could indicate MS is a vascular disease, Canzoneri might be a candidate for treatment through his participation in the study.
That would probably be years away in Canada. But because I'm one of the 100 people accepted, if the decision is that people who have MS have clogged veins, it may lead to surgery for me," says Canzoneri.
He and Spiewak agree that by being part of the study, hey are taking part in something that will make history, whatever the results.
"Whatever they find out, I'm looking forward to being part of it," says Canzoneri.
"This is the next step, and it's good to see it happening. Whatever the results, this step is necessary."
MS is considered a disease of the central nervous system and it is thought the disease attacks myelin, a protective covering wrapped around the nerves of the central nervous system.
It is also an unpredictable disease, affecting vision, hearing, memory, balance and mobility. Its effects are physical, emotional and financial—and Canzoneri is proof of the definition.
Because of balance problems,he has been unable to work—he is a drywall installer and taper, often working on ladders, and his doctor told him it was unsafe for him to continue. He lives on a disability, with great support from family and friends, he says.
He has two youngsters, but sometimes finds it hard to look after them. He says the worst symptoms are when his memory fails him and his head feels 'fuzzy,' making it hard for him to think clearly or make decisions.
He suffers from depression, some days more than others. He can wake up one morning and feel great, and the next day not be able to get out of bed, he says.
And he tires easily, which is typical of MS patients.
Together, Spiewak and Canzoneri have gone through happy and sad times together—high school, going way to college, weddings, funerals, babies, and more recently for Canzoneri, divorce.
"We've laughed or cried through it all," says Spiewak.
"When something happens, Dave's the first person I call."
It was about five years ago that her friend's life changed forever—after suffering from blurred vision and fatigue, he was diagnosed with MS, a life-changing illness.
Spiewak says when she was an elementary school student, and each opportunity to help fundraise for a cause came along, the MS walk was the one that tugged at her. "I could not understand the concept of a disease that had no cure—I thought there had to be a needle that fixed it, but there wasn't."
She took part in fundraisers for the disease, not knowing anyone who had it, but the day she heard her friend's diagnosis, she says, it finally made sense to her why she was so drawn to it.
Since then, she has tackled fundraisers herself, using her photography business to offer Easter specials, with a portion sponsoring the annual MS walk.
Each year, their fundraising team —Team Canary, since from the time they became friends Spiewak has called him Dave Canary—has grown, last year raising $5,000.
But since early last year, they have been waiting to hear about the study, and just learned they have been accepted.
The research, Spiewak says, may be the key to success and to providing some relief to her friend's debilitating symptoms, although Canzoneri is trying not to get ahead of himself.
"Do I have hope? Yes, of course, but I don't need false hope. I'm a realist, but I still have to have hope."
http://www.niagaraadvance.ca/ArticleDisplay.aspx?e=2910512