Parkinson’s care guidelines for health providers also a resource for patients

Canada now has a set of national guidelines aimed at establishing a consistent standard for diagnosis and treatment of Parkinson’s disease across the country.

The guidelines, developed by neurologists and movement disorder specialists, are designed to provide information and advice to family physicians and other health-care professionals, with the goal of improving care for people with the progressive neurological disease.

“Most Canadians with Parkinson’s do not attend specialized Parkinson’s or movement disorders clinics,” said guidelines editor Dr. David Grimes, director of the Parkinson’s disease and movement disorders clinic at the Ottawa Hospital.

“A tool was needed so that all health-care providers who treat people with Parkinson’s in Canada have a clear idea on how best to help individuals manage their disease.

“The guidelines are meant to improve the standard of care and access to care for people with Parkinson’s in all regions of Canada.”

Joyce Gordon, president and CEO of Parkinson Society Canada, said she believes the guidelines will result in earlier diagnosis, better treatment and management of symptoms, and an improved quality of life for people with the disease.

An estimated 100,000 Canadians have Parkinson’s, which occurs most commonly in people over age 65, but can develop at earlier ages. Actor Michael J. Fox, for instance, was diagnosed with early-onset Parkinson’s in 1991 at age 30.

The incurable disease, which results from a reduction of dopamine in the brain, is marked by tremor, slow movements, halting gait and speech problems. But people with Parkinson’s may also have less obvious symptoms — among them depression, cognitive deficits, difficulty swallowing and gastrointestinal disorders.

While patients should be seen by a specialist to at least confirm the diagnosis, it isn’t always possible for them to see neurologists for regular followup care as the disease progresses, said Grimes. And there are too few doctors specializing in the movement disorder and most are located in urban centres, she added.

That’s why it’s important for family physicians and other health professionals, who often manage a patient’s ongoing care, to have guidelines outlining the complexity of symptoms and the best treatments available, said Gordon.

“What we heard from people living with Parkinson’s was that they felt health professionals needed to have a greater awareness and understanding of the impact of Parkinson’s disease, and in particular what it means day-to-day to live with it, so that they could make better decisions (about) being able to treat effectively,” Gordon said.

“So communication between the health-care professionals and the person with Parkinson’s is really critical.

“But more importantly, as the disease progresses, it’s really important to have a relationship with the family and the caregivers that are supporting that person.”

Keith Goobie was diagnosed with Parkinson’s two years ago, but found the neurologists he initially consulted focused primarily on physical manifestations of the disease and not the cognitive symptoms he was experiencing.

One of his most troubling problems was having episodes of “brain freeze,” when he would cognitively disconnect for two or three seconds, losing the thread of conversations and whatever else was going on around him.

“In the beginning I didn’t know what was the problem … and did not make the link to Parkinson’s,” said Goobie, 54, of Richmond Hill, Ont., north of Toronto.

It wasn’t until he got referred to a Parkinson Society-approved neurologist and began getting holistic care involving a range of therapists — as recommended by the guidelines — that he felt his varied and individual symptoms were being addressed, said his wife Roslyn Patrick.

“What (these guidelines) say is that we need to have accurate information available to all, right from the beginning. That was not available under the process we embarked on,” Patrick said.

“This is why this is so important, because it says to the various medical (professionals): ‘These are issues that need to be addressed when you’re dealing with a Parkinson’s patient,'” and their care plan has to be individually created.

The guidelines are available online at http://www.parkinsonclinicalguidelines.ca and will be published in the July issue of the Canadian Journal of Neurological Sciences.