Nurse Kelly Williams fills a care gap with heart and expertise

Kelly Williams, right, works with patient Marilyn Nodolsky.
Kelly Williams, right, works with patient Marilyn Nodolsky.

After almost 15 years as a registered nurse, one couple stands out for Kelly Williams. She met them when she was working in a hospital early in her career. The husband was her patient and had Parkinson’s disease. “It was his wife’s determination as his health care advocate that really impressed me. She was very informed about her husband’s condition. And she was firm with the staff about the need to get him his medication on time and how his disease and its treatment should influence his care while in hospital. I really listened to her,” says Kelly.

That early experience continues to resonate with Kelly in her current position as the Clinical Resource Nurse at the Movement Disorder Clinic (MDC) at Deer Lodge in Winnipeg, Manitoba. Kelly graduated from the University of Manitoba, Faculty of Nursing in 2002 and then earned her Canadian Nursing Association – Certification in Gerontology in 2005. After working in a hospital for 10 years, she joined the team at the MDC in 2012.

For almost five years now, she has specialized in assisting people living with Parkinson’s disease, and thanks to the generosity of our donors, Parkinson Canada funds a portion of her salary. Kelly teaches her patients about the progression of the disease; helps them understand their medications; assists them with troubleshooting problems they may experience; and encourages them to live well with the disease.

With only one multi-disciplinary Movement Disorder Clinic in Manitoba (there is one other Movement Disorder Specialist at St. Boniface Hospital in Winnipeg) Kelly has the distinction of being the only Clinical Resource Nurse in a MDC in Manitoba. As a result, she sees and talks to patients from across the province, as well as people in Nunavut, western Ontario and eastern Saskatchewan. And the funding from Parkinson Canada supports the work she does with people living with Parkinson’s disease, who are not patients of the MDC.

“I fill a care gap for people with Parkinson’s. I want them to have their best life possible, to be able to advocate for themselves in medical situations and in the community, and to connect with others living with Parkinson’s by joining Parkinson Canada support groups and exercise groups.”

In addition to patients, Kelly educates health care professionals about the intricate balance between “on” and “off” times, the importance of getting medication on time and the other complexities of life with Parkinson’s disease.

At a recent presentation to physiotherapists and rehab assistants in a hospital, her information was a revelation for many in the audience. For instance, they now understand the importance of scheduling their sessions with people with Parkinson’s at the optimum “on” time.

With 25 Canadians diagnosed with Parkinson’s every day, and more health care professionals encountering new people with Parkinson’s, Kelly’s services are increasingly in demand. In 2014, she gave nine presentations to patient support groups and health care professionals, including staff in long-term care facilities. Last year, she gave 22 presentations and this year she will deliver 50.

The two-pronged approach of educating patients and health care professionals seems to be making a difference and changing attitudes, according to Kelly. “Not too long ago, conversations were only about medication. Now patients and their care partners are more likely to take control of their disease, be more positive and enjoy more autonomy. For instance, people are more aware of the importance of exercise to living well with Parkinson’s and they recognize they can do something to make themselves feel better.”

Kelly says she loves every part of her job. “I really feel like I’m making a difference in the lives of my patients; that my work is having an impact.”

Now and then she thinks back on the fellow with Parkinson’s, whom she nursed so long ago, and his “amazing” wife. She wonders what they would think of the work she does today. We think they’d say: “Well done, Kelly!”

Editor’s note: Kelly makes use of many Parkinson Canada resources to educate patients, care partners and health care professionals. People living with Parkinson’s and their families should visit www.parkinson.ca for information and resources. Health professionals can find resources and opportunities for continuing education at www.parkinsonclinicalguidelines.ca.

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Smoothing the course of Parkinson’s medication

Dr. Ariel Levy
Dr. Ariel Levy

People with Parkinson’s disease who have been taking the main drug treatment prescribed to relieve their symptoms often experience a roller coaster ride in terms of the way their body responds.

Levodopa-carbidopa, the medication used to relieve the tremors, shuffling and stiffness of Parkinson’s disease, compensates for drops in the amount of dopamine, a neurotransmitter or signaling chemical that occurs naturally in the brain. But when taken in conventional pill form, the drug can’t compensate, over time, for the continuing decrease in dopamine that occurs in the brain.

As a result, the amount of levodopa each pill releases generates a sharp spike in dopamine levels, eventually followed by another drop. This instability results in fluctuations in the symptoms of Parkinson’s that people experience.

“It’s very difficult,” says Ariel Levy, a clinical fellow at the Movement Disorders Clinic at Toronto Western Hospital. “You get the side effects of having too much medication and the side effects of too little medication.” Dr. Levy recently received the $50,000, one-year, Garden Centre Group Co-op Corp. Clinical Movement Disorders Fellowship from the Parkinson Canada Research Program.

Levy, a neurologist, is studying ways to alleviate this drug-fuelled roller coaster ride. His research is focused on a new pump that delivers levodopa-carbidopa in a gel form, directly into the intestinal tract. The pump ensures a continuous, stable dose of medicine that goes directly where the body will absorb it best.

This pump is an important innovation, Levy says, because the changes people experience at advanced stages of Parkinson’s have received comparatively little attention from researchers.

Levy hopes a stable dose of the medication will also alleviate some of the non-motor symptoms of Parkinson’s, such as sleep disturbances, memory problems, incontinence and digestive difficulties.

Levy’s work is part of a 26-week study on the performance of this intestinal gel and the design of the gel pump, which is comparatively large for patients to carry around and challenging for clinicians to program. His work will help the manufacturer of this technology refine the design. Levy also hopes to identify the type of person most likely to benefit from using the pump.

Although it remains important to diagnose Parkinson’s as early as possible so treatment has the best chance of slowing the disease, Levy underscores the need to establish effective strategies for dealing with later stages of Parkinson’s as well.

“We need to assess these changes as the disease proceeds so as to retain the best quality of life for these patients,” he says.

To read about other researchers being funded by the Parkinson Canada Research Program, visit our website.

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Making your wishes known can help others – November is “Make a Will” month

2011_11_14_03_making_your_wishes_known

Did you know that more than 50 per cent of Canadians do not have a Will? A carefully written Will ensures that your assets can be distributed according to your wishes, after your death. This document must be signed by you and witnessed. By taking the time now to consider your wishes and write them down, you provide such an important planning tool for the financial security of your loved ones. Financial advisors and estate lawyers recommend that everyone should have a Will. Age is not a factor. If you have assets, you should have a Will. Are you prepared? If not, there are experts who can help.

Through careful planning, you can enhance your financial benefits, while creating a legacy of hope for future generations. Bequests in your Will allow you to continue to support the causes that are important to you during your lifetime. Bequests often have the largest impact when you direct a portion, or percentage, of your estate to a cause, achieving tax savings for your estate.

Benefits to you by making a gift to charity in your Will

  • Convenient: It can be made regardless of your age and for any amount.
  • Cost-effective: Your present income will not decrease.
  • Simple: It is easy to arrange. Simply instruct your lawyer to include a gift to Parkinson Canada in your Will. It can be a specific amount, a percentage of your estate, or the residue of your estate (a gift after debts have been paid and other gifts have been distributed.)
  • Tax Relief: Your estate will receive a charitable tax receipt which can be used to reduce taxes on your final tax return and, in some cases, the previous year’s tax return.

Benefits to Parkinson Canada and the people you help

  • Helping people with Parkinson’s: Your gift will enable us to provide education and support services, and advocate on behalf of Canadians living with Parkinson’s.
  • Investing in a cure: Your gift will also provide funding for innovative research, expanding our  knowledge about early symptoms, diagnosis and treatments for Parkinson’s disease, and ultimately  bring us closer to a cure.

Register now for our Will planning webinar
On Wednesday November 23, 2016, you and your family are invited to join us for a free webinar on Will Planning and Power of Attorney. The webinar begins promptly at 1:30 pm (EST) and you will have the opportunity to ask questions during the 45-minute session. The webinar will be presented by Stephen Offenheim, B.A., L.L.B, Member of the Law Society of Upper Canada.  Register today. If you miss the live webinar, you can view it later online. Visit www.parkinson.ca.

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Parkinson Canada announces funding for 19 research projects for 2016-2018

Parkinson Canada and its partners is proud to support 19 researchers recently named as recipients of its Research Program grant, fellowship and student awards for the next two years. They will advance our knowledge of Parkinson’s, a complex brain disease; share their information with the scientific and Parkinson’s communities; and their work offers hope for the future to those living with the disease.

These latest awards represent a total of $1,124,018 to support new research projects in Canada. The Parkinson Canada Research Program is currently committed to investing a total of $1,439,018, including the nine research awards now in their second year. Since 1981, the Parkinson Canada Research Program has invested more than $26 million in 503 research projects.

The latest awards include:

  • 7 Pilot Project Grants
  • 3 New Investigator Awards
  • 3 Basic Research Fellowships
  • 1 Clinical Movement Disorders Fellowship
  • 1 Clinical Research Fellowship
  • 4 Graduate Student Awards

A detailed list of the 2016-2018 researchers, their project titles, affiliations and funding amounts can be found in the Research section of www.parkinson.ca. Later this fall, profiles of this year’s funded projects and researchers will be added to the Research section of the website and highlighted throughout the year in e-Parkinson Post.

How do we decide which projects to fund?
The selection of funded projects follows a rigorous process. Parkinson Canada sends out a call of proposals well in advance of the application deadline to Canada-based researchers, health care professionals and graduate students. A peer review of the proposals is conducted by Parkinson Canada’s Scientific Advisory Board (SAB), who review, score and rank each application using Canadian Institutes of Health Research (CIHR) standards. (Members recuse themselves from reviewing any application where there is a conflict of interest.)

SAB members, all volunteer experts, take about two months to review and score the applications and then gather together to discuss and rate the proposals. Rankings based on the  SAB’s ratings are delivered to The Research Policy Committee (RPC), who recommends that the Parkinson Canada Board of Directors funds those applications with the highest ratings for scientific excellence, innovation and relevance to Parkinson’s.


Members of the SAB gather to rate research proposals.
“We are able to conduct such a rigorous and high-quality adjudication and funding process, with the generous contributions of time and expertise of our SAB members and the members of the Research Policy Committee of the Parkinson Canada Board. The quality reputation of our Research Program is upheld by their efforts and expertise,” says Julie Wysocki, Director, Parkinson Canada Research Program.

The final step in the research funding process is that all grant recipients are required to submit progress reports and financial accounting reports annually and upon completion of multi-year awards.

Progress reports highlight research results and the sharing of them through both scientific and public presentations and publications. “The sharing of the knowledge acquired, is just as important as the research results themselves,” says Wysocki. “Knowledge transfer ensures the work our researchers do is added to the global body of Parkinson’s knowledge.”

In addition to the 19 projects receiving funding for the 2016-2018 funding cycle, another 66 projects that were scientifically meritorious and recommended for funding, fell below the funding cut off and went unfunded. To fund these additional projects would require another $3,557,688 in available funding, which depends on donor support. Your donation to Parkinson Canada helps the Research Program contribute vital and relevant evidence about Parkinson’s disease in Canada and around the world.

More about the Parkinson Canada Research Program
Parkinson Canada is the largest, non-government funder of Parkinson’s research in Canada. Investing in science that explores most aspects of the disease, including: causes, complications, cognitive impairment, biomarkers, neuroprotection and quality of life provides hope and understanding. Parkinson Canada researchers also investigate related disorders such as Multiple System Atrophy (MSA), Progressive Supranuclear Palsy (PSP) and other forms of parkinsonism, and the impact these diseases have on individuals and society.

The Parkinson Canada Research Program invests in:

  • High-quality, innovative Canadian research by established and promising investigators.
  • Discovery-stage research where investigators test new theories and pursue promising new leads.
  • Researchers at the beginning of their careers in order to foster the next generation of Parkinson’s scientists.
  • Novel research to build greater capacity, promote creativity and engage more researchers.
  • Specialist training for clinicians to build capacity in high quality care for people with Parkinson’s.

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The pulsating brain and its implications for Parkinson’s disease

Bradley MacIntosh
Bradley MacIntosh

Even before people with Parkinson’s disease experience motor symptoms that include stiffness or tremors, they may have problems with their blood pressure and cognitive issues that affect their judgment and reasoning ability.

At Toronto’s Sunnybrook Research Institute, Bradley MacIntosh, a neuroimaging scientist, is using imaging technology to try to identify people with these early symptoms of Parkinson’s. MacIntosh is using functional Magnetic Resonance Imaging (fMRI) to scan the brains of people who have difficulty regulating their blood pressure, a problem called orthostatic hypotension. MacIntosh was awarded a $45,000 Porridge for Parkinson’s (Toronto) Pilot Project in Honour of Delphine Martin grant from the 2015-2017 funding cycle of the Parkinson Canada Research Program.
These blood pressure problems can cause light-headedness, dizziness and fainting, particularly when people stand up. The scans MacIntosh is conducting will track how often the brain is pulsating – a measure of blood flow to the brain. He believes the volatility of that blood flow is bad for the brain, and may be either depriving brain cells of oxygen or flooding them with too much oxygen, at different times.  That “pulsatility,” is an indication of the orthostatic hypotension.

“The brain is like Jello, and it’s pulsating with every heartbeat. Too much of this jiggling, we think, is related to blood vessels that have lost their ability to cushion the blood flow,” he says.

MacIntosh hopes to correlate rates of pulsatility with fluctuations in white matter in the brains of people who have already been diagnosed clinically as being in the early stages of Parkinson’s disease. He and his team will also test their cognitive functioning to see if that is also declining.  If he can confirm an association with the volatility of blood flow to the brain, and show cognitive decline, he will not only have developed a way to help diagnose Parkinson’s disease, he may also open up treatment avenues. Treating the volatile blood pressure early might prove beneficial.
“What we’re aiming for right now is a non-invasive diagnostic tool using information that is already out there,’’ says MacIntosh. “It’s just a matter of finding and proving that this can be helpful.”

Parkinson’s disease is just one of the many complicated subjects that MacIntosh studies, from physics to jazz. “My life is not complicated, but I like complicated things,” he says.  He particularly enjoys working in Parkinson’s research because “there’s a lot of optimism in the field of Parkinson’s.”

Read about other researchers recently funded by the Parkinson Canada Research Program.

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