Parkinson Canada reaches out to pharmacists to enhance their ability to advise people living with the disease

Pharmacy Module
Online learning module for pharmacists

It’s no surprise that pharmacists are an important member of the health care team for a person with Parkinson’s. Pharmacists advise them about their medications, potential side effects and possible adverse interactions with other medications. Taking medication as prescribed and on time is an important factor in living well with this degenerative brain disease.

With this in mind, Parkinson Canada is launching an online learning module, especially designed to help pharmacists understand Parkinson’s medications and advise their patients living with the disease. We encourage people living with Parkinson’s and their care partners to share this news with their own pharmacist and other members of their health care team.

“Parkinson’s disease is a complex neurological disease and is best treated by a team of health care professionals,” says Grace Ferrari, Senior Manager, Education & Support, for Parkinson Canada.  “Pharmacists are a primary source of information for patients about medications, not only their prescription drugs to treat Parkinson’s, but also over-the-counter medications, and interactions between food and drugs. We know that the practice of pharmacy is evolving from one of dispensing medication to one of patient-centredness, so it is important that we provide this online learning module to help pharmacists quickly identify their patients’ needs and provide the most relevant help.”

The module Parkinson’s Disease Management was developed by Dr. Greta Mah, the clinical pharmacist for the Parkinson’s Management Program and the Geriatric Day Hospital at North York General Hospital in Toronto, Canada.

The learning module uses case scenarios to provide learners with a better understanding of drug treatment options at the different stages of Parkinson’s disease. After completing the module, pharmacists will be able to:

  • Recommend adjustments to medications based on the individual’s motor complications and different stages of the disease;
  • Recognize and manage various non-motor symptoms commonly experienced by patients with Parkinson’s; and
  • Describe the role of the pharmacist in providing care to patients at different stages of the disease.

In addition to the learning module, Parkinson Canada will test a pilot application (app) accessible by mobile phone or tablet this week during the World Parkinson Congress 2016 in Portland, Oregon. A potential resource for both health care practitioners and people with Parkinson’s, the medication app will provide the health care provider with the most relevant treatment options and aims to develop patients’ self-management skills.

“We are very excited to share this application at the World Parkinson Congress,” says Grace Ferrari. “With more than 4,000 people onsite, it’s the perfect opportunity to gather expert feedback on the tool from all the key potential user groups including patients, care partners and a variety of health care professionals and researchers.”

Tejal Patel, BScPharm, PharmD, and Feng Chang, BScPharm, PharmD, are the experts behind the app. They also wrote the 2015 article “Practice recommendations for Parkinson’s disease:  Assessment and management by community pharmacists” for the Canadian Pharmacists Journal.  Patel and Chang are also the authors of a Parkinson Canada medication booklet, currently in production. It will be a comprehensive resource for people living with Parkinson’s, their caregivers and medical professionals. We’ll keep you informed on when these resources become available. Visit our websites at: www.parkinson.ca and www.parkinsonclinicalguidelines.ca for updates on these and other educational resources.

Pharmacists, or other health care professionals, can register for the Parkinson’s Disease Management online learning module by completing the online registration form. A fee of $30 applies.

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Screening for chemicals that could keep brain cells healthy

Professor Siegfried Hekimi
Professor Siegfried Hekimi

Mitochondria, the energy-producing building blocks in cells, are essential to keeping those cells healthy and functioning. Researchers know that having defective mitochondria is a trait that several neurodegenerative diseases share, including Parkinson’s and Alzheimer’s disease.

At McGill University, Professor Siegfried Hekimi is honing in on a molecule called ubiquinone, also known as Co-enzyme Q (CoQ).  Hekimi, a geneticist, knows that mitochondria need ubiquinone to produce energy and to keep cells healthy. He also knows that pathologists have found low levels of ubiquinone in the brains of some people with Parkinson’s disease after they have died.

Hekimi theorizes that if researchers find a way to boost the amount of ubiquinone in cells, or to make whatever ubiquinone remains in damaged cells work more efficiently, that would help mitochondria to function better.  More ubiquinone might even repair damaged cells.

“Mitochondria are the weak point for aging brain cells,” Hekimi says. “We don’t know at this stage that boosting mitochondrial function will cure the disease, but … it should certainly help alleviate symptoms.”

Hekimi and his team have developed a tool to screen chemical compounds to observe their effect on ubiquinone.  Once they administer compounds to cells that are cultured in a dish, the cells turn different colours depending upon whether the chemicals boost ubiquinone and keep the cells alive, or whether they die.

The more positive results Hekimi and his students get from the compounds they try, the more avenues for drug discovery they have opened.

For Hekimi, whose former PhD supervisor in England has Parkinson’s disease, the research is now even more personal.

“I cannot give a prediction of how long it will take, but I’m sure we will find something,” he says with confidence.

Professor  Hekimi’s research is being funded by a one-year, pilot project grant of $45,000 from the Parkinson Canada Research Program.  To read about other research projects being funded by the Program, visit www.parkinson.ca

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Parkinson SuperWalk brings hope to thousands

Blake Bell

In pouring rain or brilliant sunshine; on a lakeside trail or inside a hockey arena; no matter the weather or location, once again Parkinson SuperWalk inspired thousands of everyday heroes and offered hope to every Canadian living with Parkinson’s disease. Each day, more than 25 people will learn they have Parkinson’s, and the Parkinson SuperWalk community inspires hope.

More than 10,000 participants laced up their runners or volunteered at 91 Parkinson SuperWalk events across the country, most of them held on September 10 and 11. Early estimates indicate that more than $2 million has been raised to date. And anyone can continue to support SuperWalk participants by making a donation online until October 30.

For the first time, this year’s Parkinson SuperWalk declared a National Hero, Blake Bell of Toronto, who won the title after receiving five nominations in a nationwide contest. In their nominations, Bell’s colleagues, friends and family called him an “inspiration,” and praised his warm and positive attitude.

“I admit I cried after reading the nominations I received and learning that I was named the National Hero. That’s not how I think of myself, I simply want to treat people well, and trust that they’ll do the same for me,” he says.
As the National Hero, Bell opened the Parkinson SuperWalk at Ashbridges Bay Park in Toronto on a hot and steamy Saturday, at the lakeshore location. He cut the starting ribbon to great fanfare, and then the skies burst open to give everyone a late-morning shower.

The downpour didn’t dampen Bell’s reaction to being the event’s first National Hero. “I was amazed at how many people came up to me and congratulated me on being the National Hero. It was very humbling,” he says.

Bell first took part in Parkinson SuperWalk last year because he wanted to support Parkinson’s research. He also wanted to tell people about the disease, and ask them to help fund the search for a cure. “It was a time in my life that I wanted to share my Parkinson’s with people that did not know about my condition,” says Bell. “I got overwhelming support from friends and family. In many ways, participating in Parkinson SuperWalk has been a part of my healing process.”

Other nominated provincial heroes also led a Parkinson SuperWalk, including: Natasha McCarthy in Charlottetown; Joan Gilroy in Halifax; Jim Pattman in Saint John; Deena Helm in Edmonton; June Benaschak in Saskatoon; Diana Rachlis in Ottawa and Bridget Thompson in Winnipeg. Congratulations to them all.

Parkinson Canada salutes all of the everyday heroes – walkers, volunteers, donors and sponsors and everyone who helped make Parkinson SuperWalk a success once again. If you missed out for some reason, you can still be a hero and make a SuperWalk donation online until October 30.

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The caregiver’s daughter

Helen Morris with grandson Michael
Helen Morris with grandson Michael

By Jean Morris

On her 62nd birthday my mother Helen Morris learned that my father had irreversible bowel cancer and that he may have a year to live. It was during the remaining 50 weeks of my father’s life that we began to notice the deterioration in my mother’s health.

My mom had grown up during the depression and her parents had to send their three girls into institutional care as they could not afford to feed and house them. Even in the face of adversity in childhood, my mother shone as a girl and then as a young woman. She married her high school sweetheart Alan Morris, and they had three children.

My mother shared a deep love for my grandmother, her mother-in-law Jean. As a former nurse, she took on the role of caregiver for Jean, who lived with us during my high school years. Although I did not share her caregiving responsibilities directly, these years taught me that teen troubles paled in comparison to the real challenges that life could present.

The weeks and months of my father’s illness passed by, presenting new challenges. During my last visit with my father, he expressed his fears about my mother’s deterioration. I tried to reassure him that her diminishing health was due to her severe depression as a result of his illness. Dad was doubtful. I assured him that if I was wrong, I would, of course, take care of her. I am so glad that these words, which could have been presumed, were actually spoken. His sense of relief still amazes me when I think of that departing vow.

My mother, who throughout her life was fiercely independent and a quiet crusader in whatever she set her mind to, was indeed ill. Had help been offered she would be disinclined to accept the helping hand. It was now 1988 and my mother had been a widow for a year. In the meekest voice by long distance phone call from Hamilton, Ontario, she asked if there were any houses near to where my sister and I lived in Halifax. It was not until she moved in with us that the extent of her illness became apparent.

We never received a clear diagnosis of my mother’s illness, nor were we consistently informed about what to expect as her condition worsened. Looking back, I believe she had “multiple system atrophy”* an atypical parkinsonism. My mother’s usual militarily erect stature became bent and shuffling. She had told her own sister, her best friend in the world: “Don’t expect me to have a conversation with you,” when she journeyed a considerable distance to visit. Her ability to speak declined to the point where only passages committed to long-term memory could be repeated. She could sing Happy Birthday, but not answer a question about whether she was warm or cold. And one day, my mother could not speak at all.

How many times I wished I had asked her simple things before this chronic disease took her hostage: Do you like to sleep on your left side or your right side? How do you like your pillow? Which flavour of tea do you prefer? I wish I had made collections of her favourite music and read to her and watched TV with her, when I still could determine what those interests might have been. I was 17 when I left home for university, and I had lived away for longer than I had lived with my mom.

We had caregivers help with my mother’s care, as both my sister and I juggled professional careers.  One of the caregivers in our “staff family,” was a crusader for getting help for my mother, especially massage therapy and physiotherapy for her increasing rigidity. How Mom struggled. There seemed to be nothing available in the early 1990s. As a team we tried to advance the rights of the disabled and access resources on her behalf.

The later stages of the disease were perhaps the most difficult for Mom to endure. Her only relaxation came during a warm bath or when sleeping. My sister and I would take turns lying down with her in the evenings, arms wrapped around her. If my mother woke up when I moved, then her sweating would begin again and the bed would be drenched within hours. It was like turning a hose on in the bed, the result was so drastic. It is these shortfalls in our caregiving that still live with me.

Although I had the experience of living with my ailing grandmother and my mother cared for my father through his long illness, we never fully discussed end-of-life issues. At that time, the medical community did not communicate with us about our options and I was not aware of any organization offering assistance to families to help us make such decisions. Today, end-of-life care and decision-making is discussed much more openly. I also know now that Parkinson Canada provides its clients with the information they need to make their own well-informed decisions at every stage of the disease.

It was ultimately the inability to swallow that led to my mother’s death. I am sure my mother understood what was said, even though she could not speak. I told my mom that if I could not feed her, we would have to have a feeding tube inserted and probably find a nursing home for her. The look on her face stays with me today…it was not fear or upset, it was determination and relief. That look stays with me now.

The effects of chronic brain disease linger.  Mom’s only grandson, my son Michael, was two years old when she passed away. My boy is now 24. It took me this long to write this article and launch my plans to donate shares of stock to Parkinson Canada, with the help of my financial advisor. I cannot bring my mother back to life. Donating shares, passed from my father, to my mother and then to me as an heir, is the closest thing I can think of to honour my mother, when all other efforts are beyond reach.

Editor’s notes:

*  Multiple system atrophy (MSA) is an atypical parkinsonism. The term MSA was coined in 1996 to describe several disorders including Shy-Drager syndrome, olivopontocerebellar atrophy, and striatonigral degeneration. To find out more about atypical parkinsonisms, visit our website.

The Canadian Guidelines on Parkinson’s Disease also contains several recommendations on communications, including two concerning palliative and end-of-life conversations:
“C7 Palliative care needs of people with PD should be considered throughout all phases of the disease.
“C8 People with PD and their caregivers should be given the opportunity to discuss end-of-life issues with appropriate healthcare professionals.”

For more information about atypical parkinsonisms, and any other information about living with Parkinson’s, contact our Information and Referral Centre at 1-800-565-3000 or info@parkinson.ca.

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Diagnosing rare forms of Parkinson’s disease

Sarah Coakeley
Sarah Coakeley

For most people with a classic form of Parkinson’s disease, medication helps control their symptoms.  At least two other progressive brain disorders have similar symptoms, though, and the same medication isn’t as effective – but researchers can’t yet distinguish between the diseases.

At the University of Toronto and the Centre for Mental Health and Addiction, neuroscientist Sarah Coakeley is using imaging technology to develop a diagnostic test for progressive supranuclear palsy, or PSP. Coakley has been awarded a $30,000, two-year, Porridge for Parkinson’s (Toronto) graduate student award from the Parkinson Canada Research Program to fund her investigation.

PSP is one of the rare disorders that affects movement and may initially appear to be Parkinson’s. People with PSP deteriorate more rapidly than people with Parkinson’s, however, and dopamine replacement therapy doesn’t control their symptoms for long.

Coakeley, a Master’s student, uses Positron Imaging Technology (PET) to scan the brains of people with Parkinson’s disease, people whose brains are healthy, and people who have already been diagnosed with either PSP or multiple system atrophy, another rare disorder.  The people participating in the study are injected with a special radioactive dye that binds to Tau, a protein in the brain that clumps up in brain cells of people with these neurodegenerative diseases.

Coakeley hopes to find a correlation between how much dye binds to Tau in the brains of the people in the different groups in her study. If there are more clumps of the protein in the brains of people with progressive supranuclear palsy, as she suspects, the imaging test would help to diagnose that disease.

“It will give them a more accurate prognosis, so they are prepared for this rapid disease progression,” she says.

Coakeley was captivated by the power of medical imaging when she volunteered as a student at an MRI clinic. Now, she’s fascinated by the stories of the people she works with.

“I didn’t realize until I actually started seeing patients in my project how important this was, and how willing these people are to do research that’s not going to benefit them, but could possibly benefit people in the future,” Coakeley says. “That’s what really motivates me,” she says.

Visit our website to read about other researchers and their projects, funded by Parkinson Canada Research Program.

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