When Keith Goobie was diagnosed with Parkinson’s disease (PD), he and his partner Roslyn Patrick did their homework to arm themselves with as much knowledge as possible about the movement disorder illness that they knew would increasingly become a challenge for Goobie.
The former IT manager had already experienced some stiffness and a tremor, but at work one day he was also struck with a “brain freeze” during which he found himself zoning out for two or three seconds at a time.
Because one of PD’s prime symptoms is a slowness of movement, the hands, legs, voice and face are often slowed and there is less spontaneity expressed – even in the face or the eyes.
“I found that even if I were quite interested in what someone was saying, my face would tell a different story because it showed no response,” says Goobie, who was diagnosed 18 months ago in his early 50s. “But that type of information was not talked about by my doctors. It was all about the shakes.”
“Essentially, the stereotype of PD is that it’s all about movement,” says Dr. Ron Postuma, a neurologist with the McGill University Health Centre in Montreal. “Although that’s true, the degenerative process occurs in many areas of the brain and in many ways. So although patients are aware of the motor aspects of the disease, they are not as aware of the non-motor symptoms or they don’t bring them up with their doctors because they don’t think they are related to PD.”
“These symptoms include the kind of brain freeze that Goobie noticed. But they may also include constipation, insomnia, loss of smell, nausea, restless leg syndrome, excessive sweating or build-up of saliva, cognitive impairment, and feeling light-headed when standing up. These non-motor symptoms are not experienced by every PD patient, but if and when they are, they often go unrecognized and untreated,” explains Postuma, who co-authored a free 50-page booklet on the subject.
This handbook, A Guide to the Non-Motor Symptoms of Parkinson’s Disease, is a joint project of Parkinson Society Canada and the Canadian Institutes of Health Research and is the first of its kind possibly in the world. It can be easily downloaded and includes a questionnaire checklist so people with PD can track what they are experiencing and take those notes with them the next time they visit their doctor.
“Many of the symptoms are only recently described,” says Postuma, who explained that much more is known now about PD.
“Now that the motor symptoms are better controlled, we see these other non-motor symptoms of which patients were not previously aware because they were so disabled from their motor symptoms. Also, patients today are living longer and better and as a result have been able to notice these things.”
Because non-motor symptoms have recently come to light, not every doctor would be aware of them. “To some doctors educated even 20 years ago, it was just the shaking disease. You need someone with a holistic view of the disease,” says Goobie, adding that the Parkinson Society has a list of recommended physicians. Tracking non-motor symptoms is important because today there are treatments available to help with almost every one of them.
“With PD a degenerative and progressive illness, so much is out of one’s control,” says Goobie’s partner Roslyn. “This booklet allows those experiencing issues with the non-motor aspects to have foresight. It alleviates additional stressors of having the symptoms either totally disregarded or marginalized.”