SuperWalk will raise funds and awareness for Parkinson's disease on Sept. 6

Parkinson’s disease wasn’t even a blip on the radar when Selen Alpay was diagnosed.

His symptoms were masked by other health issues that caused such pain it diminished everything else.

“About four years ago I was experiencing some horrible back pain and I was told I'd had scoliosis for the last 50 years, if you can imagine,” Alpay said.

“And I have severe degenerative disc disease on top of all that so that caused me a lot of pain and there isn’t a surgeon in North America that will operate on me because of the severity of the curve in my spine and there was talk about having to replace all the vertebrae in my back during a 12-hour surgery. It’s like a bridge and you have to have a place to fasten the top and bottom but in my back there is no place to secure it so they can’t operate and they didn’t think I would survive the surgery anyways.”

One of Alpay’s dearest friends, Michael Pinball Clemons, helped him connect with a neurosurgeon in Toronto.

“At first they were giving me injections in my back to help ease the pain,” Alpay said.

“And that worked for a little while but then they hardly made a dent in my pain level. So the last time I saw a neurosurgeon to talk about surgery he said ‘I don’t think your only problem is your back pain. You have symptoms that indicate Parkinson’s’ and I said ‘what?’”

There were underlying symptoms on top of the pain that made everything worse.

“A year ago I couldn’t walk,” Alpay said.

“Today I am walking much better and that’s because of an amazing naturopath I found in Toronto, again because of Pinball Clemons. The naturopath helped correct my spine a little bit so that my vertebrae are not touching anymore so I don’t have that horrendous pain. But I have this shuffling walk that’s happening, especially when I get tired and my handwriting is horrible. I used to have lovely handwriting for a guy, now it’s looks like a doctor’s handwriting. So we didn’t know what that was all about so my doctor called the clinic in Vancouver and was able to speak to a neurologist and they said there aren’t any clinical ways to prove you have Parkinson’s, it’s all symptomatic. And this neurologist said ‘you have all the symptoms for Parkinson’s and we’d still like to see you but the waiting list is terribly long’ so they put me on meds for Parkinson’s that allowed me to walk better and sometimes when I’m really tired I have tremors in my hands but it’s not very evident ongoing and my voice peters out throughout the day. I don’t speak loud enough and my wife, Anita, gives me sh*t all the time.”

He's been taking the meds for more than a year now and was officially diagnosed with Parkinson’s in January.

“I started to feel better, I walked better, the shuffling still happens when I’m really, really tired,” Alpay explained.

“And I feel like I’m tipping over at times and I’m not sure what would happen if I actually fell. There are days when I think I can run and then there are days where I can barely walk so that can become really frustrating but I am a happy-go-lucky guy so I try really hard not to get in my head about it. I have so many good people around me who give me lots of positive reinforcement and you know what? To be honest with you people are the best medicine for this thing - for anything – but especially this thing."

Alpay told his story during the launch of the SuperWalk that took place on Tuesday, Aug. 12 at Lheidli T'enneh Memorial Park.

Alpay will help raise awareness and funds for Parkinson’s disease during the Prince George Parkinson SuperWalk that takes place on Saturday, Sept. 6 at Lheidli T’enneh Memorial Park.

This fundraiser for Parkinson Society BC will help continue to grow its programs and services, expand advocacy efforts and invest in innovative research and bring hope to the approximately 17,500 people in BC living with Parkinson's disease. Parkinson's disease is a progressive, neurodegenerative disorder caused by a loss of the cells that produce dopamine in an area of the brain called the substantia nigra.

Symptoms listed on the Parkinson BC website include: 

• Resting tremor – repetitive shaking movements occurring in the arms and/or legs at rest. (Tremors are the first symptom to appear in about 70 per cent of people with Parkinson’s.)
• Rigidity – increased stiffness in muscles and joints.
• Bradykinesia – slowness of movement, including all actions, such as walking and writing.
• Lack of coordination – postural impairment or loss of balance.

“We really want to create a high awareness level about the SuperWalk and Parkinson’s for sure,” Alpay said.

“I think last year they raised about $8,000 and we want to get that number way higher this year.”

 The Prince George Parkinson Group, under Serena Sanghera’s guidance, is advocating to establish a Movement Disorders Clinic in Prince George to serve those with mobility issues in Northern BC.

“There’s a Movement Disorders Clinic in Kelowna, Vancouver and even on the Island but the lonely Northerners are left without once again,” Alpay said.

“So it would be our hope – even if we can’t get brick and mortar up here, which would be great – but even to have a mobile unit come up to the North three or four times a year so that the people in Prince George that are afflicted with Parkinson’s can be looked at would help.”

Gina Beddome, who lost her husband Barry in 2023 after a 20-year battle with Parkinson’s disease, has been involved with the Prince George Parkinson Group for the last 15 years and organizes the walk.

“That’s the thing with Parkinson’s – we all know someone with cancer or someone affected by cancer but not many people know someone with Parkinson’s disease,” Beddome said about the struggles of raising awareness for the cause.

There are about 65 members of the local group.

“The SuperWalk is important to me because every organization needs money to function and this is the primary fundraiser for Parkinson Society BC that provides the much-needed services to the groups and those with Parkinson’s, fund research and support and this is how they operate – through the funds raised by the SuperWalks across the province,” Beddome said.

“They get no government funding.”

During the SuperWalk the Telus Ambassadors will be hosting a hot dog cart.

“And the Prince George Parkinson Group will get 100 per cent of those proceeds,” Beddome said.

“It makes me feel good to be able to help with the SuperWalk, not just for the funds raised but to bring awareness of Parkinson’s disease and what those who are dealing with it are going through. There’s not many people who know someone with Parkinson’s so people don’t know what they go through as they battle this disease and they don’t see how it affects the families. So to be able to ease the fight against Parkinson’s, to support that, is a good feeling.”

For the Prince George SuperWalk Alpay is putting a team together and Shirley Bond, former MLA and volunteer extraordinaire, is helping with that.

“Because I pretty much do anything Shirley tells me to she’s naming the team Selen’s Squad and if you join our team you will be presented with a T-shirt that says Selen’s Squad on one side and Shakin’ Not Stirred on the other and I like that,” Alpay laughed about the reference of one of the symptoms of Parkinson’s which is shaky hands. “Hey, I make a mean martini! If you can laugh about it, you’re doing OK.”

For more information or to register visit https://support.parkinson.bc.ca/SuperWalkPrinceGeorge.