Working to improve good communication between people with Parkinson’s, their care partners and health professionals

Healthcare professionals committed to clear and compassionate communication can make a meaningful difference to their patients.

When people with Parkinson’s know what healthcare professionals recommend and why, they can anticipate what to expect; they are better prepared to navigate the system, ask the right questions, and make the best personal choices.

Parkinson Canada launched the ACT on Time™ campaign to improve the quality of life of people with Parkinson’s disease and to help hospital and care facility staff to understand Parkinson’s better. When managing Parkinson’s symptoms, people with the disease need to get their medication on time, at home, in an emergency room, or in a long-term care facility. It’s imperative that strict medication regimes be followed; this could mean administering medication at a different time from the usual pre-set rounds in various healthcare settings. When people with Parkinson’s don’t get their medication on time, every time, Parkinson’s symptoms can become uncontrolled; people can become very ill and can take longer to recuperate.

If people with Parkinson’s get medication on time, this will:

• shorten hospital stays
• reduce the need for readmission after discharge from hospital
• reduce the burden on individuals, families, hospital and care facility staff.

The ACT on Time program includes the informative Managing my Parkinson’s in a Healthcare Setting which includes information on drug interactions, planning for hospital stays and a diary to summarize visits with specialists. The Medical Alert Card contains emergency contact information, current medications taken and medications to avoid. To view the various components of this program online visit www.parkinson.ca/resources/act-on-time/ or contact education@parkinson.ca.

A Day in the Life…

“I’m living with Parkinson’s. I’m 59 years young, and I never saw it coming. Not that long ago, I was a registered nurse, working in home care at a local health agency. I truly loved my job. I loved being able to support others in their time of need. I was living a full life,” says Hélène Deutsch, M.Sc., a clinical nurse living in Montreal and diagnosed with Parkinson’s disease in 2016.

Hélène was working extended days as a clinical nurse, just to get through all of her nursing tasks. She noticed that she was slowing down, but was not sure why. The slowness was becoming a true impediment and she delegated tasks that required fine motor skills, like taking blood, giving injections and wound care.

The tremors in her left hand started. Soon, she was dragging her left leg and then the tremors were constant, affecting her balance as well. Her family doctor, colleagues and friends all suspected Parkinson’s and that diagnosis was confirmed in 2016.

The challenge, even for a clinical nurse like Hélène, is that there is no test to confirm a diagnosis of Parkinson’s—and, there is no cure.

Hélène reached out to Parkinson Canada’s information and referral services shortly after her diagnosis. At a time when she was filled with uncertainty and fear, Parkinson Canada connected her with resources that helped her cope with her disease and plan for her new life. She has hosted information sessions about the first signs, diagnosis, motor and non-motor symptoms, as well as management strategies, including medication therapies and complementary care options.

“Volunteering helps me continue to be of service in my community. I use my nursing background working with support groups, teaching Parkinson’s Disease 101 sessions for newly diagnosed patients and their care partners, and Parkinson’s Disease 201 sessions for nursing students and other health professionals to demystify Parkinson’s for them,” adds Hélène. “And I’m certain that one day, research will unlock the key to cure this disease. ’

Parkinson Canada is committed to research and is a founding partner of the Canadian Open Parkinson Network (C-OPN), a new collaboration designed to foster knowledge sharing and increase the pace of Parkinson’s research. The network will give researchers access to unprecedented data and will support large scale, multidisciplinary projects that would not be possible at a single research site. C-OPN will officially launch in March 2020.   

Through the Parkinson Canada National Research Program, Canada’s best and brightest scientists can develop new treatments that will improve the quality of life for people like Hélène who are living with Parkinson’s.  

Parkinson Canada’s Canadian Guideline for Parkinson Disease, 2^nd Edition, was published in the Canadian Medical Association Journal (CMAJ) in September 2019. The guideline is designed to enhance care for all Canadians with Parkinson disease and:

• is based on the best published evidence
• involves expert consensus when there is a lack of evidence
• offers practical clinical advice
• takes into account patient choice and informed decision-making
• is relevant to the Canadian healthcare system

The updated guideline provides a comprehensive review of this complex disease focusing on communication, diagnosis and progression, treatment and non-motor features, as well as a new section on palliative care. For your free download of the guideline and the summary infographic, visit www.parkinsonclinicalguidelines.ca

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