Nfld. & Labrador

In sickness and in health: Battling Parkinson's as a couple

For the Caves of Corner Brook and the Coffeys of Gander, Parkinson's has left them with only one option: keep going.

Two Newfoundland couples in different stages of a Parkinson's diagnosis are leaning on each other

Shawn and Cynthia Cave have each found their own way to find meaning and purpose in Shawn's Parkinson's diagnosis. He makes handcrafted weighted utensils, and she's revived and now chairs the west coast chapter of the Parkinson's Society. (Bernice Hillier/CBC)

Cynthia and Shawn Cave have been together for 24 years. Though their marriage vows said "in sickness and in health," Cynthia says no one thinks they'll have to handle the former as a couple while they're still young.

However, in January of this year, Shawn Cave was diagnosed with Parkinson's disease at the age of 44. Only one half of the Corner Brook couple has the illness, but anyone who's watched a loved one live with a life-changing condition knows that it never affects only the person who's sick.

"It's been a tough blow to watch him progress as fast as what it's progressed," said Cynthia Cave.

"Just a matter of months and now he needs assistance going down the stairs. He has to be watched at all times. It's very hard to deal with."

'My heart sunk'

It all started with a few broken dishes, and was easily dismissed as nothing more than clumsiness. But the tremor in Shawn's arm causing him to drop things was a sign of something serious.

He'd suspected Parkinson's disease for months but when the neurologist's diagnosis came, it hit him like a ton of bricks, Shawn said.

Shawn Cave has started making his own handcrafted, weighted cutlery suitable for use by someone with Parkinson's. (Bernice Hillier/CBC)

"He said 'You do have Parkinson's.' And my heart sunk."

Parkinson's is a neurodegenerative disease caused by the death of brain cells that produce a chemical called dopamine, which controls the body's movement by helping to transmit signals between nerves in the brain.

When someone has Parkinson's, those signals don't get through properly and the tremors, impaired balance and muscle stiffness characteristic of the disease start to appear.

He said 'You do have Parkinson's.' And my heart sunk.- Shawn Cave

A loss of balance that caused him to fall off a stepladder last summer convinced Shawn to seek out medical testing. The tremors started in full force shortly after his diagnosis, and they haven't stopped since. 

For now, Shawn lessens his symptoms with physical exercise and speech therapy, and controls the tremors with prescription medication. But it's still early in his journey with Parkinson's, so he expects adjustments will be made in both the drugs and dosages prescribed.

Family impact

Mike and Marilyn Coffey are nearly two decades down the road the Caves have just begun travelling.

Mike, from Gander, began to have trouble speaking and swallowing. Happily married to Marilyn and a self-described workaholic, he shared Shawn Cave's sense of disbelief at his diagnosis at age 43.

Marilyn and Mike Coffey celebrate 33 years of marriage this year. Marilyn says they've lived more with the disease than without. (Melissa Tobin/CBC)

In fact, the Coffeys kept Mike's diagnosis a secret between the two of them for more than a year, until the truth came out at a family event.

"I was standing behind my sister-in-law. She was sitting and I had my hand on the back of her chair. All of a sudden she said 'who's shaking my chair.' I didn't realize it was me," Mike said. 

"I was trying to keep it quiet. I didn't want anyone to know about it. I didn't know what to do, right? I couldn't hide it. So I just had to come out and tell everybody."

Down but not out

Creating his own handcrafted weighted cutlery gives Shawn Cave a sense of pride and a way to occupy his time. (Submitted)

The Caves are now reaching out in hopes of making life better for others with Parkinson's.

Shawn has always been a bit of a handyman, so he's turned his attention to a project that will occupy his time and benefit other patients.

He realized that his tremors made feeding himself with regular cutlery — which is lightweight, and hard to hold steady — one of his most challenging tasks.

"It makes it very difficult," Shawn explained.

"Because there's no weight, there's nothing there to control."

Cutlery with wider, weighted handles is easier for people with tremors to grip and guide to their mouths, but can be expensive. Shawn was looking for a way to occupy himself, so he began making cutlery of his own. He plans to sell the utensils to others with Parkinson's and donate any profits to the Parkinson's Society.

"I'm not about to sit back and let this disease take over," said Shawn.

"I'm not sure how long or how fast this could go, but I'd like to be as active as I can because, with being active, it helps take my mind off it and it helps control some of the tremors."

Reviving support group

The Caves have also been instrumental in re-starting a dormant west coast Newfoundland chapter of the Parkinson's Society, which ended when its former chair became too ill to continue with the responsibility.

After moving to central Newfoundland, Mike fell in love with fly fishing. He says there's nothing Parkinson's is going to stop him from trying to do. (Submitted)

After Shawn's diagnosis, the couple inquired about whether a support group of any kind existed in western Newfoundland. On learning that it was no longer active, Cynthia stepped up to revive and chair it.

"It was the only thing I could think of to help to keep us involved and make sure that other people here in Corner Brook and the western side of the province knew that there was someone here that they can go to if they need help or if they want to talk," she said.

Mike Coffey says his wife Marilyn has also been very involved with his own care since his diagnosis 18 years ago.

"A lot of my courage comes from Marilyn," he said. "She's my backbone in all this."

Mike built his own cabin with the help of his father-in-law. He calls his cabin his passion. (Submitted)

It's been hard for Marilyn to see her husband struggle with things others take for granted, like walking across the floor, brushing your teeth or eating a meal. But a positive attitude helps. 

"The way I see it, you didn't have a choice with this disease, whether you had it or not," Marilyn said. 

"But you could make choices with how you were going to live your life with it. I keep encouraging him to keep doing what he can, while he can."

On the move

Mike Coffey has seen some of the difficulties that might lie ahead for Shawn Cave. Mike had to give up his career as a diesel mechanic seven years after the diagnosis, which he said was a blow. 

Mike attends a weekly exercise program in Gander, but the couple knows a move to St. John's — with more options for treatment and where he has many appointments — is inevitable.

Mike Coffey goes to a weekly exercise class in Gander. But he and his wife plan to move to St. John's in a few years, because there are more programs offered by the Parkinson's Society of Newfoundland and Labrador in the capital city. (Melissa Tobin/CBC)

But there have been good things in the couple's lives post-diagnosis as well. Mike, an avid outdoorsman, embraces the wilderness of central Newfoundland. He loves riding his ATV and has a passion for fishing, and his happy place is the cabin he built himself. 

"When the summer time comes, it's all cabin," he said. "It's all I think about." He said he wouldn't be able to do it without Marilyn by his side, and the couple will celebrate their 33 wedding anniversary this year.

"We've done more with this disease than without," Marilyn said. 

"We've travelled. We've been to the Caribbean maybe 14 or 15 times. I mean, that's not easy. But Mike just picks up and goes. He couldn't have done any more than what he has done."

The couple will travel in April to Toronto, where Mike is being tested for deep brain stimulation, a procedure to reduce tremors and block involuntary movements related to Parkinson's.

However, even for being further from some treatment options, and for living with Parkinson's for nearly 20 years, Mike says he's still going day by day.

"I see people out there that haven't had it not nearly as many years as I got it who seem to be worse. If they only had the right doctor, or the right neurologist, or the right location with programs for them," he said of others with his condition. 

"My condition after 17 or 18 years, I'm doing pretty good."

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