As Thora Rogers stood at her front door, unable to move, she willed herself to take a step.
A friend was on the way to pick Rogers up for Pilates, but her medication hadn't kicked in yet so her body was shaking and her feet wouldn't budge. It was like they were glued to the floor.
"And I yelled at myself, I yelled (with) the highest, loudest sound I could make, and I yelled, 'Move!' and I actually moved," recalls Rogers of that day about a month ago. "And I thought, oh my God, it worked!"
In 1982, Rogers was working in administration with the coast guard when she noticed an unusual movement in her neck. When she looked to the left, her head shook back and forth slightly. She went to a neurologist to have the symptom checked out and received some good news.
"He said, 'The good thing is you don't have Parkinson's, what you do have is the same thing as Katharine Hepburn,' who it turns out had Parkinson's," she says.
At the time, Rogers was diagnosed with benign essential tremor, which is not a symptom of Parkinson's but people can have both.
Thirty years went by, and Rogers, who grew up on the North Shore and now lives in North Vancouver, was again faced with a troubling symptom. This time, her thumb and hand were quivering back and forth involuntarily. She thought it was related to her benign tremor, but when she visited her chiropractor he also noticed the new symptom and suggested she get it checked out.
Rogers went back to the same neurologist she had seen so many years earlier, but this time she got a different diagnosis. Based on what he called some telltale signs, including her quivering thumb and something called cogwheel rigidity (which presented as a type of jerking response when the doctor pushed down on her arm), her doctor told her she probably had Parkinson's disease.
Rogers decided to get a second opinion.
When she visited another neurologist, who was known for diagnosing people with Parkinson's disease simply by watching them walk down a hallway, he handed her a piece of paper and told her to write the letters MNO over and over, all together, without any spaces between them.
"I said, 'No problem,'" recalls Rogers.
She started to write and got nervous when her hand wouldn't stop shaking. The doctor told her he wasn't worried about the shaking.
As she wrote, the letters got smaller and smaller.
This is called micrographia and it is a common feature of Parkinson's disease. After a CT scan and some other tests to rule out other conditions, the diagnosis was confirmed.
"I was shocked, scared. I think I went through a hell of a lot of stuff that I've sort of gotten over over the years, but it was pretty scary and I kept thinking this can't be and why me, and you know the usual stuff," says Rogers of learning she had Parkinson's disease.
Parkinson's disease is caused by a degeneration of the cells that produce dopamine in an area of the brain known as the substantia nigra.
"Dopamine is a brain neurotransmitter, which sends signals from one nerve cell to another. It affects the parts of the brain that control smooth, voluntary movements such as walking, writing, throwing a ball or buttoning a shirt," explains Jean Blake, CEO of the Parkinson Society of British Columbia, in an email to the North Shore News.
She says the symptoms of Parkinson's appear when more than half of the dopamine-producing cells are lost.
"It is not known why the cells are damaged or destroyed although there are many theories," she notes. "It is possible that genetics and the environment work together to cause Parkinson's."
She says it is known as both a disease and a movement disorder, and although it is not by itself a fatal disease, it does get worse with time. People with Parkinson's disease can live close to a normal life span, but in the late stages of the disease complications can occur, such as choking, pneumonia, and falls that can lead to death.
The progression of symptoms may take 20 years or more. In some people, however, the disease progresses more quickly.
"There is no way to predict what course the disease will take for an individual person," writes Blake. "With appropriate treatment, most people with PD can live productive lives for many years after diagnosis."
Val Swannell lives in West Vancouver with her partner of 17 years, Lyn Blanchard. The couple founded a management consulting firm in 2000. In March of 2010, Swannell says she was "a bit relieved" to get her diagnosis of Parkinson's disease.
"I had been to the specialist, a neurologist, a year before, in March 2009, and he couldn't say if I had PD or not. During that year, my symptoms had become quite a bit worse, primarily affecting my speech, writing and balance including some falls, and a few other not-so-nice things," she explains. "I needed to know what was happening to me. So, yes, I was somewhat relieved to get the diagnosis because finally I knew what I was dealing with.”
Swannell conducts her interview with the North Shore News via email because Parkinson's disease has significantly affected her speech.
"I was a successful management consultant and gradually my lack of ability to speak clearly created difficulties with clients, regrettably causing me to retire in June 2010," says Swannell. "This was a major life and identity changing milestone for me. But I decided to concentrate on what I could do for myself. Although there were times when I saw the glass half empty, I chose to become a glass-half-full person and not dwell on the negative."
Swannell has since become active with the Parkinson Society and has helped with some of their fundraising efforts. She was the top individual fundraiser for the society's largest provincial and national fundraising event of the year, Parkinson SuperWalk (held on May 8), and her team was the top fundraising team in B.C. in 2013.
Staying active has been good for Swannell, explains Blanchard.
She says she started noticing changes in her partner's speech and communication skills before her diagnosis, and was at least glad they finally found out what was wrong.
"You don't really know what it is, so certainly you're hoping that whatever it is will just go away, but unfortunately that's not the case and sooner or later you're faced with the situation and the diagnosis," she says. "It's disheartening, obviously, to see somebody going through kind of a real struggle around things that were normally commonplace but at the same time you have to take one day at a time, you can't go down the road of ultimate disaster."
Right after the diagnosis the couple had discussions about understanding what they were up against and how they could move forward with the best care.
Blanchard says a variety of services from Lions Gate Hospital, including speech therapy, has been helpful for Swannell. And while they continue to move forward together in a positive way, Blanchard says it has been frustrating for both of them.
"One of the biggest changes when she was first diagnosed was that she couldn't work anymore and of course we were business partners," she says. "That was definitely a change for us."
Dealing with symptoms on a daily basis can also be hard for both of them. Blanchard says sometimes it's difficult when she can't understand what Swannell is saying due to her trouble speaking, and it's just as frustrating for Swannell when she's not able to do certain things she used to do.
"Being patient becomes a very important thing and sometimes you lose patience but you try to rally back and think, well, I'll just be more patient," says Blanchard. "You're adjusting a lot over time."
Although the progression of symptoms can be slow, Swannell says the disease has changed her life dramatically in many ways.
"I used to take a lot of things for granted like being able to communicate effectively and being able to do almost anything I set my mind to. (For example) I used to be an advanced skier with my favourite thing being crashing the moguls on double and triple black diamond runs. Now I enjoy the things I used to take for granted like the scenery and just being up the mountain with friends."
For some people, the symptoms of Parkinson's disease can become debilitating. When asked if she worries she might become her partner's caregiver, Blanchard answers no.
"I think everybody brings different skill sets, different perspectives and characters and personalities to a relationship. And so if you really love a person you love that person and you adjust accordingly. And that's what we're doing," she says, noting she doesn't think about the long-term prognosis and when they get to that bridge they will cross it.
"Everybody as we age is going to get progressively worse in terms of a lot of things so what is the alternative? I have Val. If she had cancer and it was terminal cancer then there's a different focus there. But I have Val today, and that's a good thing."
Having a strong partner has also helped Rogers, who says her husband has been a rock of support since her diagnosis. The couple have been together for 26 years and have one grandchild and one on the way.
Diagnosed at the age of 49, Rogers had to retire from her job with the coast guard when she was 52 due to the progression of her disease. Her medication mostly keeps the symptoms in check now, but it wears off within hours and she says she basically goes from dose to dose.
Although the medication is not consistent in some ways, such as in the time it takes to kick in, it is helping.
"When I'm fine, people cannot tell I have Parkinson's," says Rogers.
A singer and musician for many years, Rogers says one of the worst effects of the disease was that she was unable to play her guitar or sing for some time. She has now regained the ability to do both and is working on a new CD called Doing it All Again. The title refers in part to her return to music.
"When I think about my body not doing what it used to do it is a little frustrating," says Rogers. She says there are times when she suddenly finds she can't walk, can't move, can't get to her bed or can't get to the bathroom and that makes her feel down. But when the medication kicks in, she is motivated to do all she can.
She says: "When I can move I move, and I don't waste a bloody minute."
The Parkinson Society of B.C. does not receive any government funding and is supported entirely by donations and volunteers.
For more information visit parkinson.bc.ca.
There are two support groups on the North Shore: Highlands United Church (for people with Parkinson's and for caregivers) contact John Hayes at 604-980-0575; at Amica West Vancouver (for caregivers only) contact Robbin Jeffereys ([email protected]) for more information.
