The husband and wife are both stricken by the disease of the central nervous system.
They desperately want to undergo the so-called Zamboni procedure, also known as the “liberation treatment.”
It appears to have helped numerous people around the world with MS by opening blocked neck veins with angioplasty.
“Getting it would mean a whole different quality of life,” says Heidi, who’s been using a wheelchair for two decades.
In this country, the apparent success of the Zamboni procedure — pioneered by an Italian doctor of that name — has resulted in debate, research and caution.
Naturally, MS sufferers want it ASAP and some are travelling to other countries on their own dime to have it done.
Others are asking for the operation to be included in provincial health plans. But governments are waiting for further research.
The Pittmans, who live in St. John’s, are on year-and-a-half waiting lists with three different facilties around the world to have the procedure.
They figure it would cost them between $40,000 and $50,000, a sum friends have graciously offered to help them raise.
But instead of going through all the rigamarole of being medical tourists, the couple — who met at an MS Society meeting in the late ’80s —would prefer to get the treatment in the city where they live.
“Tomorrow,” Heidi says, with a laugh, but betraying an obvious sense of urgency.
“I’ll be the first one on the table. I’ll be the guinea pig.”
Heidi’s husband, whose MS is not as debilitating as hers, says he’d settle for seeing the province cover the ultrasound needed prior to the procedure.
That would make it easier and less costly when they go to another country.
"It would do (for now),” says Rick, who’s a pharmacist by profession and understands that health procedures need to be researched extensively before getting government approval.
The Pittmans don’t know if the treatment would cure them, but they’re willing to try it and have an optimistic confidence it would help.
In an ideal world, Heidi says, it’d make her better and she’d be able to “burn through six pairs of shoes until there was nothing left but flames.”
However, she’d be grateful if the operation gave her back the life she enjoyed before her condition worsened in 2005.
She was in a wheelchair then, but says she was independent and didn’t think of herself as someone with MS.
Today, however, Heidi suffers from depression, severe fatigue and a list of medical complications.
“My independence is gone. I can’t even dress myself. When I’m having help getting dressed, it’s like I’m a store mannequin. Everything has changed. ... Before I had a disability. Now I’m disabled.” - Heidi Pittman
“My independence is gone. I can’t even dress myself. When I’m having help getting dressed, it’s like I’m a store mannequin. Everything has changed. ... Before I had a disability. Now I’m disabled.”
Rick’s MS has resulted in an eye condition, fatigue and balance issues.
“He walks like he’s drunk,” Heidi says bluntly.
But Rick, who had to give up his job and his car, says that when he looks at his wife’s condition, he’s “pretty good.”
He says he can’t imagine what will happen if things worsen for either of them.
That’s fuelling his desire for them to both get the Zamboni procedure.
He’d like to be able to drive again and return to work.
The Pittmans argue the province could save money if it allowed the operation to be performed here.
They say drugs and home care cost the government about $100,000 a year.
Approving the operation has nothing to do with money, Health Minister Jerome Kennedy says.
He agrees it would ultimately save the province money if it cured Newfoundlanders and Labradorians with MS.
But he says the position of provincial governments across the country hasn’t changed — they want to wait until the MS society completes research and clinical trials.
“If the Zamboni procedure is proven to be valid and scientifically (sound), it’s something we would welcome,” Kennedy says.
The minister said he recently met two Newfoundlanders with MS — Mike Duffy, who had the procedure and reports improvements in his condition, and Mark Lane, who’s been quite public about his desire to see the liberation treatment offered here.
Kennedy says the men understand the government can’t just fund an operation, but he says they’d like to see research expedited.
To help with that goal, Kennedy says he committed to write the MS society and ask for details about the research as well as a timeline.
He also agreed to ask for information from an Aug. 26 meeting of health researchers and to ensure the country’s health ministers discuss the operation when they meet in St. John’s next month.
He says his department will also assemble additional information on the procedure.
“Anything that can improve their quality of life is something, as a government, that we want,” Kennedy says, “but again, we have to be cautious.”
sbartlett@thetelegram.com
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