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Hoping for a window

Duodopa is used to treat patients with advanced Parkinson’s disease.
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Chris and Harold Olsen met with MLA Marc Dalton last week to thank him for his work helping get the Parkinson's drug Doudopa approved under Pharmacare





Chris Olsen first felt a twitch in her finger playing softball. She had injured her shoulder a couple of times and thought it was a pinched nerve.

But her play was slipping.

“I thought I was losing my edge.”

She took herself off the team.

“I couldn’t figure out what was going on.”

It was the beginning of Parkinson’s disease, which in the past 15 years has stolen more than joy from her life.

It has advanced to such a stage that every two hours, to the second, she takes pills to control her constant twitching, to prevent her from body from freezing up, to help absorb the drugs that help with each, to let her eat and sleep.

“I haven’t slept in 15 years,” said Olsen, now 68.

Eating can be difficult, because she struggles to swallow food.

But she has hope that a drug approved last week by the provincial government will help.

It’s called Duodopa, and it’s expensive, about $60,000 a year per person.

Chris and her husband Harold joined a campaign, Duodopa for B.C., to have the drug covered by Pharmacare.

Duodopa is used to treat patients with advanced Parkinson’s disease who have severe and disabling motor symptoms that cannot be well controlled with available combinations of medications.

This drug has been approved by Health Canada and is funded in a number of other provinces, and now for a few in B.C.

The Duodopa for B.C. website encourages people to write letters to their MLA, health minister and the person in charge of PharmaCare, Barbara Walman, asking them to support public funding of the therapy.

About a year ago, Chris and Harold visited Maple Ridge-Mission MLA Marc Dalton, who lobbied for the drug’s approval.

On Valentine’s Day, Health Minister Terry Lake said, after discussions with the Parkinson Society of B.C. and Pacific Parkinson's Research Centre, that 10 to 12 British Columbians suffering from the disease will soon be able to try Duodopa, with fees covered by the province.

Chris Olsen hopes to be one of them.

She will go for tests next week to see if she would be a good candidate.

Duodopa is a gel that is injected directly to the small intestine, pumping once every minute, which helps with absorption of other necessary medications.

Surgery is required first, to insert the intestinal pump.

Physicians at the research centre will identify suitable patients and submit requests for PharmaCare coverage under the ministry’s special authority program.

Dalton is confident Olsen will qualify.

When he met with Premier Christy Clark last fall, he mentioned to her that getting Duodopa approved was a priority, to help improve the quality of life for Chris and others like her.

“I am very happy and hopeful for her that access to this drug therapy could represent a dramatic change in quality of life for both her and her husband Harold.”

Chris and Harold met with him on Friday. He greeted them with hugs in the lobby of his office on Dewdney Trunk Road. They brought him and his staff a snack tray, and a thank-you card.

Harold is a caregiver for Chris. It can take five minutes to get from the car to the front door of a building. When she freezes, it can take 10 to 12 minutes just to get from the living room to the bathroom in their Maple Ridge apartment. They had to rearrange all the furniture and put a gate on the stairs, add railings.

“There’s no way she could go down the stairs when she’s rigid,” Harold said.

“Or up,” adds Chris.

They don’t go out much anymore. They arranged to celebrate a bunch of family birthdays together at The Keg a while back, and made reservations. But then Chris couldn’t go. She locked up, called dystonia.

The involuntary movements are called dyskinesia.

It took doctors a year to diagnose Chris with Parkinson’s, for which there is no one chemical test, but rather a collection of symptoms.

When told she had Parkinson’s, “I fell apart.”

She thought she was too young.

She had a granddaughter. Now she has four grandchildren, ranging in age from one to 18.

Harold was an elementary school teacher, but retired six years ago. He no longer had the energy to be the teacher he needed to be.

They moved from Vancouver to Maple Ridge, where they had lived before many years ago.

They joined a support group.

The first eight to 10 years were bearable, Chris said. She would exercise two to three times a day, going for 15- to 30-minute walks.

But the past five years, the tremors have been so bad she can do less and less.

Since she was first diagnosed, Chris has lost 100 pounds, from the constant twitching.

“I eat like a horse.”

She hasn’t sat down to eat a meal for two months, preferring to stand.

Chris feels her world has gotten smaller and smaller. She’s become almost confined to their apartment.

Two years ago they went to San Francisco.

This year they went to Abbotsford.

Going to the grocery store is an ordeal.

Every time she copes with a symptom, another appears.

Swallowing food has been difficult for the past three years. Harold cuts her food into little bits.

When her medications worked, she used to get brief windows without tremors, without crashing, when she could move with her walker, maybe get out.

But she doesn’t get those windows any more.

But she could with Duodopa, as it has worked for others like her.

That is her hope, for maybe four to six hours a day without trembling or freezing.

Then she could go dancing.

If all goes well, that is she wants to do.

Chris and Harold will celebrate 40 years of marriage in April.

They have already booked the amenity hall at their apartment complex, to celebrate with family and friends.

“We’re hoping Chrissy will not have to cancel it,” said Harold.