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Seeking a buddy - and a cure for Parkinson's

Saturday September 14, 2013

Carol Mulligan

Sudbury Star - Like most people with a devastating disease, Kelly Campbell Thomson isn't looking for sympathy.

What the 38-year-old mother of two wants is someone to whom she can relate.

Diagnosed with Parkinson's disease 18 months ago, after suffering symptoms for at least three years, Thomson is grateful for the support she has received from family and friends.

She has learned a great deal about the neurodegenerative illness by attending meetings of a Parkinson's support group in Sudbury, comprised of what she calls "wonderful people."

She has enjoyed the sense of camaraderie at Parkinson Superwalks held in Sudbury where the emphasis is on family and fun.

Still, in her heart of hearts, Thomson wants to find a "Parkinson's buddy," someone her own age or close to it who could share the pain -- and sometimes the laughter -- of having a disease that usually strikes people 25 years older than she is.

The odds are against her. People diagnosed with young-onset Parkinson's disease, as she was in March 2012, make up a small number of the population who get the disease.

Only five to 10% of people get Parkinson's when they're under 40. Only 20% of Parkinson's sufferers are 50 or younger. About 100,000 Canadians have the debilitating disease.

Little did Thomson know, when she was a girl growing up in Iroquois Falls, she would one day share something in common with her teenage heartthrob, Michael J. Fox.

She couldn't have imagined she would later be connected to the superstar actor, not by the posters of him she hung on her bedroom walls, but by an illness that would attack them in their mid-30s.

Thomson has little in common with Fox these days, beyond the disease. He's wealthy and has access to treatments she could never afford.

Nor is her disease as far advanced as Fox's, as he is now 52.

In both cases, a difficult disease hasn't killed their sense of humour. Fox will demonstrate his in a new television comedy series, The Michael J. Fox Show, starting later this month.

In it, he essentially plays himself, a man with Parkinson's who leaves his job as a news anchor when diagnosed, copes with family life at home and returns to work.

Thomson's sense of humour is evident when she laughs at herself for so badly wanting to find someone her own age with the same condition.

Thomson has touched base with some young-onset Parkinson' s sufferers on Facebook and other websites. Often those sites are filled with angry comments by people bitter at being afflicted with a disease that so drastically affects their lives.

Thomson gets that. She has already lost a great deal.

She doesn't always have the energy to keep up with her children -- Hannah, 15, and Keelor, 12, who both have special needs.

She's had to give up a career she loved as a popular hairstylist in Sudbury. Her plan to style hair at home for family and friends has faded because it's hard to book appointments when she doesn't know how she will feel that day. That leaves a family that relied on two incomes compromised financially.

Thomson is also grieving the loss of two of her favourite pastimes -- attending live concerts and going to the movies, both because of finances and the difficulty accessing seating.

She still gets to the occasional concert by Blue Rodeo, a band she loves so much she named her son after band front-man Greg Keelor.

She misses going to the Townehouse on Elgin Street to hear local bands, because they don't take to the stage until late in the evening, when her strength has run out.

Thomson knows what it's like to be angry, to ask, "Why me?" But self-pity isn't a path she wants to travel.

It was more than three years ago when Thomson began experiencing tremors in her left hand after suffering a week of illness due to stress. When she recovered from that week, the shakes did not go away and she feared something wasn't right.

She did her research and thought she might have Parkinson's. Because of her age, her doctor doubted it and ordered an MRI to determine if she had a brain tumour or multiple sclerosis. Both were ruled out.

When the tremors moved into her left leg, Thomson was convinced something was wrong. Pain in her neck and shoulders was blamed on her job as a hairstylist, but she began waking up with pins and needles in her left arm.

As well as the tremors, she was unsteady on her feet and experiencing a side effect of Parkinson's for some, dystonia, cramping in certain parts of her body, particularly her feet.

She would experiment with several medications, some of which made her sick or didn't work, before she would see a movement specialist who officially diagnosed her in March of 2012.

"I was hoping it would be anything but," said Thomson. "That it could just go away. But this disease will not go away. There's no cure for it, and it will continue to progress."

While the cause of Parkinson's isn't known, it is thought to occur when the brain loses dopamine, a neurotransmitter responsible for sending signals between the nerve cells of the brain.

"Basically what it means is that your brain is aging at a faster rate. Your brain is kind of dying," said Thomson of the disease.

Her doctor asked whether trembling ran in her family. It doesn't.

By November of 2011, when she could no longer write her name or walk properly, "I knew something was wrong with me," said Thomson.

A southpaw, the shaking became so severe she had to teach herself to write, brush her teeth and do other chores with her right hand.

After a referral to a neurologist, Thomson was told she had "a little bit of Parkinson's."

She wasn't surprised.

"Pretty much by then, I knew that I had Parkinson's disease. I had all the symptoms."

Between a rock and a hard place, Thomson wants to know everything about her disease -- and is frightened to face her future at the same time.

She and her husband, Tim, visited the headquarters of the Parkinson Society of Canada in Toronto in May 2012. Kelly went there looking for hope.

She found it to a degree when she spoke with Sandie Jones, client services co-ordinator with the society. Jones was a "wonderful lady, very knowledgeable," said Thomson, but there was a big question she couldn't really answer.

"Where are all the young people? Why am I the only one under 40?"

She was put in touch with a couple of people with young-onset Parkinson's who live some distance away. She discovered they experience the same hopes, dreams, fears and frustration she does.

"I have days when I'm very, very angry," said Thomson. "I have days when I'm very upset and I cry a lot."

She wants to know what causes Parkinson's. "How come they don' t know why? Because, if they know why, then they'll be able to find a cure?"

Mostly, though, Thomson wants to know: "Where are the young people? Where are they? I need them."

She has made a buddy in Brenda Leclair, who was co-ordinator of last Saturday's Parkinson Superwalk and a member of the support group to which she belongs.

Leclair, 53, was diagnosed with Parkinson's when she was 42, several years older than Thomson, but still very young.

Leclair understands what it's like to have to give up a career you love because of fatigue, insomnia, tremors and other symptoms.

She understands the anger -- "how did this happen?" -- and the fear of the future.

A former hospital ward clerk and nurse who worked with long-term care patients, Leclair "knew too much" about Parkinson's, "therefore I saw the end and I was really upset."

She, too, experienced the loss of income and purpose when one's career is cut short.

Leclair had difficulty accepting the disease and was mad at the world.

At last Saturday' s walk, she laughed when she recalled Parkinson's support meetings where those attending tried to remain upbeat.

"I'd go to the support group and say, 'You guys are full of s---. Do you not know what you're going to be?' " said Leclair.

Her attitude has turned around drastically because she has learned to laugh at herself.

"I do have bad days, no doubt, but more good days than bad days,"

she said.

Things changed for her when she came out of what both she and Thomson call "the Parkinson's closet."

Many people, especially those who are younger, try to hide their symptoms and illness for fear of losing jobs,

friends and relationships. Thomson met a

woman in her 50s with Parkinson's who was carrying on with her profession, but who was in deep denial about her disease.

Insisting the symptoms weren't that severe, the woman's face wore the "Parkinson's mask," the frozen face of someone afflicted with the disease.

Fox reportedly hid his Parkinson's symptoms for years for fear of suffering career-wise.

Admitting publicly she had Parkinson's was a breakthrough for Leclair.

"As soon as I came out, it was a big load off my shoulders because it's OK."

Like Leclair, Thomson is focusing on the things she can control -- good nutrition and exercise, although that' s hard to do when you're exhausted. Managing stress is also important to having a good quality of life.

Her disease is progressing fairly quickly, as it often does in younger people. Her specialist tells her she may be referred for deep brain stimulation this fall.

Deep brain stimulation involves implanting electrodes within certain areas of the brain. The electrodes produce electrical impulses that regulate abnormal impulses, which can affect certain cells and chemicals within the brain.

The degree of stimulation is controlled with a device like a pacemaker placed under the skin in the upper chest. A wire that travels under the skin connects the device to the electrodes in the brain.

Thomson has spoken with a woman on Facebook who shaved her head to have the device implanted. That will be a difficult pill to swallow for a hairstylist who takes great pride in her appearance.

It's not foolproof, but deep brain stimulation may ease some of the symptoms and help with painful dystonia.

Thomson admits it's difficult to be positive sometimes, but she's making every effort.

Progression of the disease is upsetting, but for the sake of her family, she tries not to show it. "They see me cry enough, but I' m trying not to."

It's unlikely she will ever return to work, but as a busy working mom, she didn't develop many outside interests.

Many people in her support group have hobbies, but Thomson says she isn't "a crafty person."

Thomson is pursuing an interest in photography, an art form that involves the brain more than physical movement.

She enjoys Friday nights out with girlfriends who go out early for the evening so Thomson can be home by 10 p.m., when her energy is gone.

Despite the support, she yearns for a Parkinson's buddy "because, no matter how much I can tell you about how I'm feeling, people don't understand, right?

Thomson would love to hear from anyone her own age who has Parkinson's. They may contact her through Karen Boyer, the Northern Ontario coordinator for the Parkinson's Society of Canada, at

karen.boyer@parkinson.ca.

There's one essential difference between older people with Parkinson's and those with the young onset version of the disease.

"We want a cure," said Thomson. "I want to be cured, but (most) older people with Parkinson's want better medications and comfort, which is fine ... but there's where the line is drawn.

"I don't want comfort, I want the cure."

Then her sense of humour kicks in again.

Her husband, Tim, has warned her, "If anybody joins this (support) group younger than you, your nose is going to be out of joint."

Thomson laughs out loud when she recalls that.

"I'm the baby, but it's hard because we really don't have a lot in common in that sense. But I do find the information is good."

Sadbury, C. (14 Sep 2013). Sadbury Star. Accent: Seeking a buddy - and a cure for Parkinson's. www.thesudburystar.com

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