One of the most difficult aspects of Parkinson’s disease is that although doctors can treat its motor symptoms, they often underestimate the impact of accompanying thinking and reasoning problems.
At Toronto’s Sunnybrook Research Institute, Dr. Sean Udow divides his time during his Clinical Movement Disorders Fellowship by focusing on ways to treat those cognitive problems, and on research to investigate a possible link between memory, judgment and reasoning deficits and blood pressure regulation. His fellowship is funded by Parkinson Society Canada’s National Research Program (NRP.)
Udow, a neurologist, knows that without any confirmed diagnostic tests for Parkinson’s, doctors need keen clinical skills to determine whether and what type of neurodegenerative disorder their patients have. The doctors rely on their experience, patient history, and observation.
“Parkinson’s disease isn’t diagnosed by an MRI or a blood test, so you really have to have a strong clinical acumen,” says Udow. “A lot of what we do is like detective work, or good old-fashioned doctoring.”
That’s why Udow is excited about his fellowship, which allows him to work with and learn from expert clinicians like Dr. Mario Masellis, and also to participate in research studies.
During their research, Udow and his colleagues will use unique Magnetic Resonance Imaging (MRI) techniques to scan the brains of people with Parkinson’s disease and dementia with Lewy bodies, another form of dementia. Some of those people will also have orthostatic hypotension – variable blood pressure, which can cause dizziness and fainting when blood pressure drops abruptly. By comparing any changes in the brain the scans reveal, Udow hopes to find further evidence that suggests the variations in blood pressure may cause the cognitive symptoms people with Parkinson’s and other people with dementia experience.
“Blood pressure fluctuations may cause small silent strokes or transient alterations of brain networks that may worsen cognitive impairment,” says Udow.
If he can confirm the link between orthostatic hypotension, cognitive problems and these two neurodegenerative diseases, Udow hopes the findings will lead to further research to determine if early, aggressive treatment of blood pressure fluctuations can prevent the progression of cognitive symptoms.
Dr. Udow was recently awarded the one-year, $50,000, Garden Centre Group Co-op Corp. Clinical Movement Disorders Fellowship from PSC’s National Research Program. This NRP fellowship program gives new doctors the opportunity to receive training specifically in the diagnosis and management of Parkinson’s disease. By 2031, the Parkinson’s population will double. This fellowship is an important step to ensure more medical specialists are trained in Canada to provide high quality care to the growing number of people living with Parkinson’s.
The latest federal election was like no other in recent history. Following one of the longest campaigns ever, Canadians turned out in record numbers to elect a Liberal majority government.
During the campaign, Parkinson Society Canada learned of the Liberal Party of Canada’s significant commitments to healthcare. Some of the top priorities that affect the Parkinson’s community include:
Increase health spending by $3 billion during the next four years in order to provide additional and improved services for the nearly two million people currently receiving care at home.
Extending the eligibility criteria for the Compassionate Care EI benefit to include coverage for those with serious chronic illness and to accommodate the episodic needs of caregivers.
Address the affordability of medication by increasing access and reducing overall costs of prescriptions through bulk purchasing and working together with the provinces to reach a new health accord.
With the election of this new government comes a host of new opportunities. The Liberal Party has clearly stated they will be changing the tone of government and allowing MPs within their party to vote freely on issues important to their community. With 213 new MPs and a renewed emphasis on local engagement and collaboration, it is crucial that we continue to build on the local relationships our Parkinson Ambassadors have successfully fostered leading up to the election. Parkinson Society Canada will continue to work with all parliamentarians alongside the Parkinson Ambassador Network to represent our voice well at policy tables going forward.
About the Parkinson Ambassador Network
The Parkinson Ambassador Network of volunteers across Canada helps advance the interests of Canadians affected by Parkinson’s disease by meeting with elected officials and key policy makers at both the provincial and federal levels. Parkinson’s Ambassadors play a vital role in our advocacy initiatives.
If you, or anyone you know is interested in getting involved with our advocacy work, please email us at firstname.lastname@example.org and someone will be in touch with you. To find out more about the Ambassador program, visit: parkinsonambassador.ca.
GivingTuesday, December 1, 2015 is an international day of giving and the opening day of the charitable season. This special day is a time when everyone can come together to share their commitment to favourite causes and celebrate the joy of giving. If you use Twitter and/or Facebook, #GivingTuesday is a great way to lead by example and encourage your friends, family and followers, to give back to the community.
The number of Canadians diagnosed with Parkinson’s will double by 2031. For more than 100,000 Canadians, a cure can’t wait. We need your support to fund essential research, like that being undertaken by the 15 researchers funded this fall through the National Research Program, who will conduct a variety of projects, advancing our knowledge of this complex disease. Researchers explore causes, biomarkers and neuroprotection, among other areas of Parkinson’s.
Donations also help fund our advocacy efforts, such as encouraging the federal government to increase the flexibility of caregiver financial support, so spouses can afford to miss work to care for their loved ones. Funding for webinars, websites, printed resources and support groups, means people living with Parkinson’s and their families have someone to turn to for information, empathy and compassion.
Your gift on GivingTuesday will help ensure a better life with a brighter future for Canadians living with Parkinson’s today and a world without Parkinson’s tomorrow.
This GivingTuesday, make a donation in support of all the Canadians who will be affected by Parkinson’s disease in your lifetime. Take our GivingTuesday pledge today and let us know you plan to show your support.
Organizing your Will can be intimidating and sensitive, but part of your personal journey involves planning for the future. This means ensuring that your last wishes are fulfilled so that friends and family will be honored in the way that you think best. Putting it off means that you may have less control over your end-of-life care and legacy – your loved ones may also be forced to make difficult decisions and manage your estate during this most difficult of times. Worse, they may be left financially unprepared and excluded from the estate process with no power to advocate for your wishes.
Many people living with Parkinson’s say that their families were relieved to know they had completed their Will and Powers of Attorney. It freed them to focus on their health and spend their energy on the things that matter most.
Earl and Shirley Simard are a couple who have included a gift in their Wills to Parkinson Society Canada. “Besides the tax benefits for the estate, our children will not have to make any decisions in this regard and we can direct how the funds are used,” said Earl Simard whose wife, Shirley, was diagnosed with Parkinson’s in 2009.
Once your family is cared for, you may want to leave a charitable gift to Parkinson Society Canada in your Will. A bequest can reduce taxes on your estate and enrich the lives of people struggling with Parkinson’s at the same time. Our Will planning toolkit is a great resource that will walk you through the process to ensure that your assets are distributed according to your wishes. You can ensure that the people who are most important to you are financially prepared. Give them the gift of remembering their loved one without being overwhelmed by details.
Take the first step and talk about your wishes with family and trusted friends. You don’t have to deal with this on your own – please contact Elizabeth Banman at 1-800-565-3000 ext. 3385 to request your free Will planning tool kit today. Check out the Gift and Estate Planning section of our website for more information, sign up for My Parkinson Legacy newsletter or get started with your free Will planning toolkit today.
On January 1, 2016, we will formally change our name and become Parkinson Canada. We will proudly continue to serve you and the Parkinson’s community from coast to coast to coast.
We are the same trusted partner that you have known for decades. We continue our commitment of placing the needs of people with Parkinson’s first while operating as an efficient and effective health charity.
Find us online at www.parkinson.ca or call our bilingual, toll-free Information and Referral line at 1-800-565-3000 from anywhere in Canada.
With the recent announcement of its 2015-2017 funded research grants and awards, Parkinson Society Canada’s (PSC) investment in its National Research Program (NRP) surpassed the $25 million mark. The program has come a long way since awarding the first research grant in 1981 of $150,000 to Dr. Clement Young of Toronto Western Hospital/University of Toronto. Since then, the NRP has funded 483 research grants and awards to Canadian researchers.
Parkinson Society Canada and its network of partners have great expectations for the 15 new grant, fellowship and student awards funded to advance our knowledge of Parkinson’s, a complex brain disease. One of the most promising of this year’s recipients is Louis-Éric Trudeau, a professor at the University of Montreal, who received a one-year pilot project grant of $44,250.
Neuroscientist Trudeau has identified a critical difference in the structure of brain cells. He found that dopamine-producing cells in the substantia nigra are much larger and consume much more energy than other cells. Trudeau thinks that this may be why they are more vulnerable than other cells to whatever process is killing the neurons in Parkinson’s disease.
“Like a motor constantly running at high speed, these neurons need to produce an incredible amount of energy to function. They appear to exhaust themselves and die prematurely,” said Trudeau. “For all major diseases of the brain, new therapies come after we know why the cells start to die,” Trudeau says.
Parkinson Society 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.
We are currently funding 26 projects. Including 11 research awards in their second year, and the 15 new projects, the National Research Program is currently committed to investing $1,264,079. These latest awards represent a total of $924,090 committed to support new research projects* in Canada during the next two years as follows:
As a person living with Parkinson’s disease, you are uniquely qualified to share your perspective, and important information, with your family physician and other members of your health care team, such as your pharmacist or physical therapist. Keeping members of your health team well informed about your own state of health, as well as using and sharing the latest Parkinson’s resources from Parkinson Society Canada, will help ensure that you receive individualized care.
We have great tools to help you, your doctor and other health care professionals, as well as their other Parkinson’s patients, understand, treat and live with the disease. We suggest you and your physician begin with our online resources at www.parkinson.ca. There are sections specifically for people with Parkinson’s and for health care professionals. For those individuals without internet access, we operate a National Information and Referral Centre, which can be reached at 1-800-565-3000.
In addition, we want every physician to know about the Canadian Guidelines on Parkinson’s Disease, so don’t hesitate to share this resource created for health professionals by Canada’s leading experts on Parkinson’s disease. These guidelines, developed by Parkinson Society Canada (PSC), are available at no cost on the Parkinson Clinical Guidelines website, which also features our online learning module for health care professionals, accredited by the College of Family Physicians of Canada. This introductory module consists of practical case scenarios that professionals can work through to gain insight into key challenges in the treatment and management of their Parkinson’s patients. Your physician will receive continuing medical education (CME) credits for completing this learning module. Additional modules will be available in the upcoming year.
As you know, Parkinson’s is a progressive disease and your symptoms will change over time. Often changes are subtle and you may not notice them or think the changes are a result of the disease. We’ve developed a checklist that may help you identify these changes. Complete the checklist every nine to 12 months and discuss these changes with your doctor during your next visit.
Parkinson Society Canada is continually reaching out to health care professionals, through their professional associations and publications and by attending and presenting at their national conferences. Next month, our National Manager of Public and Professional Education will be attending the Family Medicine Forum, co-hosted by the College of Family Physicians of Canada, in Toronto. Thousands of physicians from across the country attend this annual professional development event and PSC will be there to share information and resources and answer questions.
“By reaching out to health care professionals directly, and providing them with relevant resources for themselves and their patients, we hope to elevate the standard of care for Canadians with Parkinson’s disease,” says Grace Ferrari, PSC’s National Manager of Public and Professional Education. “It is also our hope that more physicians will recognize the early signs of Parkinson’s, leading to an earlier diagnosis. The sooner treatment of symptoms begins, the better quality of life a person living with Parkinson’s can have.”
The next time you visit your doctor, or another member of your health care team, consider passing along this article to them. If you have their e-mail address, why not forward them this issue of e-Parkinson Post with a personal note, encouraging them to check out PSC’s health care professional resources before your next appointment.
A research partnership between neurosurgery innovators at the University of Saskatchewan (U of S) and cutting-edge stem cell researchers at Harvard, holds out new hope for people living with Parkinson’s. Dr. Ole Isacson, a Harvard professor, recently joined Dr. Ivar Mendez, Chair of the U of S surgery department in Saskatoon to announce their joint research project, which will eventually transplant dopamine-producing brain cells, through a state-of-the-art “micro-injector,” into the brains of 20 people with Parkinson’s disease.
Isacson, a neurobiologist, and Mendez, a neurosurgeon, have been collaborating for about a decade, and will unite their formidable expertise in a joint research project. “The Harvard team is at the leading edge in producing clinical-grade brain cells for cell transplantation,” says Mendez.
Isacson’s team starts its work with the skin or blood cells of an adult patient. These cells are turned into stem cells and then transformed again into dopamine-producing brain cells. “Because the cells originate from the patient, the body does not reject them. And we don’t need to use immuno-suppressing (anti-rejection) drugs, which can have many severe side effects,” says Mendez.
Isacson described Mendez’s neurosurgical team as “one of the most sophisticated,” in the world. Mendez, a pioneer who first transplanted fetal stem cells into patients’ brains at Dalhousie nearly a decade ago, is the only surgeon in Canada, and one of only a few in the world, who can perform the intricate procedure. And this time he’ll be using the latest technology in a computerized micro-injector to deposit the adult stem cells from the patient to within 0.3 millimeters of the target area, roughly the length of a grain of table salt.
“We program the parameters of the transplantation into the computer control of the device,” says Mendez, “such as the volume of cells, the rate of implantation and build the deposit using a 3D array to the exact location in the brain.”
Both teams of researchers will continue to study and test their respective parts of the research, with clinical trials set to begin in two to three years. Criteria will also be developed to select the most appropriate patient-candidates for the trial. All of the surgeries will be done by Dr. Mendez in Saskatoon, although the patients will be selected from across North America.
“We are very proud that this work will be done in Canada, with our multi-disciplinary team, including imaging, surgery, movement disorders specialists and many others,” says Mendez. Like deep brain stimulation surgery, patients will be awake, but experience no pain, during the surgery, which will take about three to four hours to complete.
Once the cells are transplanted, they will gradually begin to populate the brain, establish connections, produce dopamine and within about nine months, it’s predicted that Parkinson’s symptoms would be reduced. “While this would not technically be a cure for Parkinson’s, since we still do not know what causes Parkinson’s, it would be a huge advance in available treatment options,” says Mendez.
“The ultimate goal is for the transplanted stem cells to reconstruct the brain circuitry that has been destroyed by Parkinson’s and restore some function to the individual,” Mendez said.
Parkinson Society Canada’s National Research Program funds innovative research that aims to unlock the mysteries of Parkinson’s disease. To find out more about currently funded projects, visit www.parkinson.ca
When Scott Ryan travelled to Sweden earlier this year, he was keen to share the Parkinson’s research results from his small lab team at the University of Guelph. He was even more thrilled to have his poster presentation be one of five winning posters, out of 1,700, at the International Society for Stem Cell Research conference.
A native of St. John’s Newfoundland, neuroscientist and assistant professor Ryan, 35, last year received a two-year, $90,000, Pedaling for Parkinson’s New Investigator Award through Parkinson Society Canada’s National Research Program. Now at the halfway point, his project is gaining international interest.
In the quest to discover what’s killing the dopamine-producing cells whose death results in Parkinson’s disease, Ryan is honing in on a group of proteins that turn signaling networks in the brain on and off. He is concentrating on the balance between cell generation and degeneration, and on finding ways to reverse the latter. Ryan uses a model of Parkinson’s disease derived from the skin of a patient with a familial form of Parkinson’s. Once in culture, the donor cells were reprogrammed into stem cells and researchers were able to correct the genetic mutation that caused the disease, in this case a mutation in the alpha-synuclein gene.
Ryan is using this model and system to identify a family of proteins, called transcription factors, in dopamine-producing cells. He describes these proteins – including one called MEF2 – as a “pro-survival team” that can keep the dopamine-producing cells alive.
If disease mutations or environmental contaminants like pesticides or herbicides evoke stress in the energy-producing portions of the cells called mitochondria, the stress can turn off the survival team’s signaling network and block their ability to keep dopamine producing cells alive.
“The more stress that builds up, the more you deactivate (the proteins) until you reach a critical level, and the cell dies,” Ryan explains.
By working with a drug discovery and development group, Ryan hopes to test different compounds on the stem cell model of Parkinson’s disease, to find one that will turn the pro-survival signaling network he has discovered back on. He hopes his discoveries will apply to both familial forms of Parkinson’s disease – something that runs in his own family – and non-familial, or sporadic, forms.
“It really doesn’t matter why you have Parkinson’s, because what’s defective seems to be common in all forms, at a cellular level,” Ryan says.
Because Ryan’s work involves a model made from Parkinson’s disease patient cells, he hopes his discoveries will be easier to move to the clinic to help treat patients, compared with animal models of drug discovery.
“Translating it to humans will be less of an issue,” he predicts.
Ryan’s research career has progressed steadily, with every step contributing to the work he is doing today. And PSC’s National Research Program has played an important supporting role in his development. His fourth-year research project on how fatty acids affect signaling in cell and gene expression sparked his interest in continuing in the research field. Subsequent supervisors and mentors in Ottawa and California helped hone his skills.
“My Ph.D. supervisor Steffany Bennett at the University of Ottawa was instrumental in training me in how to approach research problems and how to think about science,” he says. “That’s also when I began studying neuroscience and I was drawn to Parkinson’s disease.”
The interest in Parkinson’s disease reaches back to his family roots in St. John’s. His grandfather and his great uncle both had Parkinson’s. “Until I was 10, I spent time after school at my grandparents’ house, just up the street,” he says.
After completing his Ph.D. Ryan was well-prepared to work with his next mentor Dr. Rashmi Kothary at OHRI (Ottawa Hospital Research Institute), who was studying several movement disorders. “He was associate director of the Institute and I was given the freedom to explore my own ideas and follow through,” says Ryan. He investigated the molecular underpinnings of a type of dystonia.
Funding from PSC’s National Research Program enabled Ryan to complete an international stint at the renowned Sanford Burnham Medical Research Institute (now called the Sanford Burnham Prebys Medical Discovery Institute) with neurologist and scientist Dr. Stuart Lipton.
“Dr. Lipton developed one of the only drugs currently in use for advanced Alzheimer’s disease,” says Ryan. “And his lab was run very much like an industry lab, conducting research and translating the results for therapeutic use. They were doing patient-derived stem cell research and I was able to apply this to my own work.”
Ryan began working on Parkinson’s disease in California with a large team of about 40 people. “In addition to the research, I learned to work with industry stakeholders, an increasingly important skill for researchers,” he says. A publication in the respected journal Cell was a significant accomplishment from this time.
Now at the University of Guelph, Ryan has his own lab, including a lab manager and post-doctoral, graduate and undergraduate researchers. The Pedaling for Parkinson’s New Investigator Award from Parkinson Society Canada’s National Research Program has helped make this a reality. In addition, he’s been able to parlay his earlier successes with PSC funding into another large, and unique funding partnership through the University of Guelph. The Ontario Ministry of Agriculture, Food and Rural Affairs, and the Grain Farmers of Ontario have granted him $300,000 over three years to explore whether dietary Omega 3 and 6 fatty acids reduce the risk of Parkinson’s disease.
“Research in Parkinson’s is definitely accelerating, driven in large part, by stem cell research and international collaboration, Ryan says. “This disease is an excellent candidate for a stem cell application. We know the location in the brain that is affected; we know that neurons are dying. And there is a large enough patient population that there is public interest, political will, interested funders and the potential to make a substantial impact on human health. It cannot be long now, before we find both lifestyle treatments and new drug treatments to prevent Parkinson’s and eventually alleviate its symptoms.”
On October 19 Canadians across the country will head to the polls to cast their votes and then await the news of who will form their next federal government. And since last March, Parkinson Society Canada’s more than 150 Ambassadors have been preparing for and visiting MPs and candidates to discuss the issues and promote the policies that will make a difference to the lives of Canadians living with Parkinson’s.
“Election campaigns and the first 100 days that a new government is in place, are critical times for informing and influencing elected officials,” says Vanessa Foran, Vice President of Public Affairs and National Programs for Parkinson Society Canada. “It’s when they are the most opento the opinions and priorities of voters in their ridings.”
Our Parkinson’s Ambassadors are promoting the following national priorities:
Comprehensive genetic fairness legislation and policies that protect Canadians against genetic discrimination from both employers and insurance companies.
A national seniors’ strategy, like the one being proposed by the Canadian Medical Association and its alliance partners, including PSC. The strategy should address the social, economic and health care needs of our older citizens in a consistent and coordinated fashion, across the country.
We are incredibly proud of all that our Ambassadors have achieved to date, and there are still many communities that need our representation. We could use your help to explain to candidates and MPs the needs of the Parkinson’s Community during this election campaign and in the critical first few months of the new government. We will provide you with the training and support you need to ensure that you are fully prepared to have an impact, in a way that’s meaningful to you.
“Regardless of the outcome of the election, one third of MPs will be new to the job and new MPs are often the most open to making a difference for their constituents,” says Foran.
You can help move Parkinson’s issues forward during the 2015 election campaign and beyond by becoming a Parkinson’s Ambassador in your riding. Whether you are a person living with Parkinson’s, a caregiver to someone living with the disease, or simply want to help with the cause, you can be a champion in your community by being the voice for Canadians with Parkinson’s.