Holding out hope

Perry Goodyear estimated there’s only been two days in the past two months that he hasn’t been sick.

Last Wednesday, when the Grand Bank resident spoke to The Southern Gazette, was one of them.

The 37-year-old, who was diagnosed with multiple sclerosis or MS in 2003, has watched the disease steadily progress since then.

First, his leg wouldn’t bend and he walked with a limp. Soon, he required a cane, then a walker and now a motorized scooter.

He has the Primary Progressive form of MS, which affects between 10 and 15 per cent of people with the disease.

“That’s my mobility. That’s all I got now. I got one arm that functions at about 50 per cent. I haven’t got a whole lot left.”

One thing the former mechanic, who is married with one daughter, does have though is hope.

It comes in the form a new theory by Italian researcher Dr. Paolo Zamboni, who believes MS is connected to a vascular disease he calls ‘chronic cerebrospinal venous insufficiency’, or CCSVI. He has suggested it can be treated by an angioplasty-type surgery on veins in the neck.

MS has been generally thought by many to be an autoimmune disorder, up until research in recent years.

The ‘liberation treatment’ – as it has been dubbed, though, has not been approved as an option for MS patients in Canada thus far. This has forced many people with the disease in this country to seek out the surgery elsewhere, including Poland and the United States.

Mr. Goodyear is headed to the U.S. this October for the procedure. He has been asked not to reveal where, to avoid flooding the facility with requests. He also applied to Poland earlier this year, but has not had a response.

He learned about the facility in the United States through a Facebook friend with MS in Ontario, who recently had the surgery performed there. He applied and had the October appointment lined up within a couple months.

“She’s doing marvelous. She’s hoping that she’s going to be back to work in the new year.”

It’s hard not to get excited when you hear about some of the stories of people who have had the procedure.

“It’s unreal the results. There’s one woman in Ontario, who never hugged her daughter in 16 or 18 years. Now she can stand up and give her daughter a hug without falling down.

“She’s cooked a full meal for her husband and daughter. She doesn’t get tired. No more fatigue. No more headaches.”

Mr. Goodyear acknowledged he has received tremendous support from around the Burin Peninsula.

An eight-person committee in Grand Bank has been formed to raise the estimated $20,000 to $25,000 needed to cover the surgery and associated costs. He indicated approximately $7,000 has been raised so far.

The next event is a soup and sandwich luncheon at the Grand Bank Lions Centre Sept. 11.

“I’ve been fortunate because I thought I was going to have to get a bank loan or re-mortgage the house. It’s looking pretty good now. I think they will get enough money.”

The provincial government had been hesitant to provide funding for clinical trials in this country for the treatment, up until recently.

Health Minister Jerome Kennedy acknowledged the province’s position had changed last week. He said a decision whether the surgery will be covered under MCP will be made after the trials are finished.

“I know it’s not going to get no better, so I’m just hoping now that this surgery will do something. That’s all I got left.” - – Perry Goodyear

Interim Liberal leader Kelvin Parsons said he is encouraged government had at least made a commitment to help fund clinical trials.

“I think it is important government has acknowledged it has a role to play in furthering research on this treatment, which is viewed by many MS sufferers as a hopeful alternative to improve their quality of life.”

Several CCSVI studies are already underway or set to begin shortly in Canada, but the results will take time.

That’s something Mr. Goodyear said he doesn’t have much of left – the disease has progressed severely in the past two years.

“I know it’s not going to get no better, so I’m just hoping now that this surgery will do something. That’s all I got left.”

Given his current condition, he anticipates the journey to the United States will be a rough one, but also worth it if he can get even a piece of his life back.

“My main thing, if I can get rid of the pain and suffering, it’d be 100 per cent for me. To be able to use a bit of function in my left arm would be nice. I haven’t used it in two years. The fatigue is terrible and the headaches.

“I’m not looking to jump up and run across the floor – just a little better quality of life. If I can get that back, it would be nice. To be able to do a little bit of something for yourself would be nice.