Silencing defective genes: a possible treatment strategy

Dr. Austen Milnerwood
Dr. Austen Milnerwood

In the last 15 years, researchers have made significant advances in identifying several genetic causes of familial Parkinson’s disease. Genes are the blueprint for proteins, the biological machines that make our cells work. By understanding the function of the proteins that these genes make, and learning what goes wrong when mutations are present, investigators are beginning to unravel the processes that cause Parkinson’s to develop.

Basic research into how brain cells communicate with each other is critical, says Dr. Austen Milnerwood, a translational neuroscientist at the University of British Columbia. Traditionally, treatment for Parkinson’s has focused on alleviating the symptoms of Parkinson’s. If Milnerwood and his colleagues can correct the changes different mutations induce in the brain, they hope eventually to reverse or prevent the onset of the disease. He has recently received a two-year, $90,000, Pedaling for Parkinson’s New Investigator Award from Parkinson Canada’s National Research Program to pursue this research.

“We will look at the fundamental alterations to brain cell communication that are induced by the presence of these (genetic) mutations, and then try to correct them,” Milnerwood says.

Working with cells cultured from genetic mouse models, Milnerwood studies how the proteins that contain mutations within them affect communication between one brain cell and the next. Mutations in LRRK2 (the most common cause of familial Parkinson’s disease), for example, cause brain cells to become hyperactive, transmitting information too rapidly.

Eliminating the activity of the LRRK2 protein appears, so far, to improve communication among brain cells containing the mutation, by reversing the hyperactive transmission of information. Milnerwood and his colleagues have already administered these compounds to mice without any adverse effects. Now they’re testing to see if the compounds are safe and beneficial to mice that have Parkinson’s disease mutations.

Similar compounds are already being tested in human trials to reverse Huntington’s disease. Milnerwood’s long-term goal is to test whether these drugs will improve the dysfunctional behaviour of brain cells involved in Parkinson’s disease.

“I believe Parkinson’s is a whole brain disorder, and in order to stop the progression of this devastating disease, we have to understand what causes it, not just look at the consequences,” Milnerwood says.

He’s encouraged by the progress researchers around the world have made in just five years on understanding the biological processes involved in Parkinson’s disease. Charting those processes will enable the intelligent design of therapies to stop the disease or protect the brain from its onslaught, Milnerwood says.

“We’ve learned so much over the last five years, that what happens in the next five years will be very exciting.”

Read about other researchers funded recently by Parkinson Canada’s National Research Program.

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New treatment gives Nick Kaethler back his life and the will to live

Nick and June Keahler
Nick and June Kaethler

When Nick Kaethler was diagnosed with Parkinson’s disease 18 years ago, he had just retired from his career as a music teacher. “We decided this was not going to change our retirement plans and we would continue to do the things we really wanted to do,” says Nick’s wife June.

They took to the road in their RV and travelled for the next four and a half years. Next, they took a crash course in teaching English as a second language and spent two years teaching English at a university in China.

All this time Nick was managing his Parkinson’s symptoms well with levodopa. Each year he would check in with his doctor and renew his prescription, before heading back on the road or back to China. Returning to Toronto in 2005, Nick’s symptoms became more severe and new symptoms appeared. He underwent speech therapy and added new medications to his levodopa.

By 2015, Nick’s life was severely curtailed by the advanced state of his disease. “It was like a giant was sucking out my life through a straw,” he says. He was taking medication every two hours to maintain very limited activity. “I was basically able to manage one activity – a meeting or choir practice – for about 40 minutes a day.” He also had arthritis and a fall had resulted in a “half hip” replacement.

“I was really going downhill and losing the will to live,” Nick says. “When I woke up in the morning, I just didn’t want to get up and live.”

The couple began to look for other treatment options. Unfortunately, Nick was not a candidate for DBS (deep brain stimulation) surgery. Fortunately, a new method of administering levodopa had just been approved for treating advanced Parkinson’s. Dr. David Grimes, Director of the Parkinson’s disease and movement disorder clinic at the Ottawa Hospital, thought Nick might be a candidate for the new treatment Duodopa – and the first Ottawa patient to receive it, under the care of Dr. Tiago Mestre.

Duodopa is a levodopa and carbidopa combination in the form of a gel that is delivered directly into the small intestine, through a small opening (or stoma) in the abdomen, delivering a more constant supply of medication throughout the day. The gel is packaged in daily “cassettes” of 2000 mg of levodopa and 500 mg of carbidopa, which is connected to a small pump, weighing about two lbs. The pump is located outside of the body and can be carried in a fanny pack, pocket, handbag or shoulder holster.

Duodopa requires an outpatient surgical procedure to create an opening in the abdomen so a tube can be inserted and positioned in the small intestine. This is done by a gastroenterologist. Daily cleaning and care of the external tubing must be done by the patient or a caregiver, who can be a family member. This helps prevent any infection of the opening. The medication dose is adjusted by a physician.

With a background in nursing, June was easily able to clean the tubing, apply dressings and wrap the tube close to the body with a bandage at night to keep it in place. “This care doesn’t require nursing knowledge,” says June; “anyone can do it with training, but I think it would be difficult to do on your own.” Duodopa’s manufacturer also provides a patient support program.

Nick had his day surgery and began Duodopa treatment in March 2015 and hasn’t looked back. “It’s like magic,” he says. “It’s still tough in the mornings, but within 30 minutes of beginning the Duodopa I want to get up and within an hour I’m planning my day. And that means activities in the morning, the afternoon and the evening. Nick is an avid bridge player and has won a regional trophy. He exercises, plays table tennis and sings in a choir.

Nick wears his pump in a fanny pack when he’s out and at home it rests in a vest pocket. He tried a shoulder holster, but it made him more lopsided, since he already has some weakness on one side. He still takes some oral levodopa at night and still deals with some symptoms, usually later in the day. “He goes through the entire cassette each day,” says June, “and has done so since the beginning.” Not all patients require the full 2000 mg of levodopa, so they will not use all the medication in a cassette.

Nick is fortunate that he lives in Ontario and is over 65 years of age. Duodopa is substantially more expensive than oral levodopa and is not covered by most provincial health plans. In 2014, Duodopa was added to the Ontario drug formulary through the exceptional access program (EAP), which has strict criteria and requires a physician’s recommendation. In Quebec, coverage is granted on a case-by-case basis; in Alberta it is covered under short-term access and a small group has coverage in the Yukon. About 80 per cent of private insurers cover Duodopa, but there is often a co-payment required.

Parkinson Canada was instrumental in getting access to the drug coverage for Ontarians. In 2013, we prepared a patient evidence submission for the Ontario Public Drug Program to support access to this new treatment option. We asked the Ontario Parkinson’s community, people with advanced Parkinson’s and their caregivers to provide us with feedback by completing surveys. We also interviewed Dr. Anthony Lang, in Toronto, who had been involved in the clinical trials of the treatment. We will continue to advocate for access to treatment options in other parts of the country.

In addition to financial coverage, not every health centre in the country is equipped to offer the Duodopa treatment option. At the time of publication, there are centres in Edmonton, Calgary, Toronto, Vancouver, Montreal, Kingston and Ottawa offering the treatment. If you are interested in Duodopa, ask your physician or neurologist if the treatment is offered in your area and what coverage is available.
“I hope this treatment becomes more available for more people,” says Nick. “In my case, it’s been a great success.”

For more detailed information about Duodopa, watch our public education webinar on Neupro and Duodopa online. It includes a thorough presentation on this new treatment option.  Visit www.parkinson.ca to learn more about living well with Parkinson’s.

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Rowing against the current of Parkinson’s disease

David Blakey on the WaterDavid Blakey on the water
Photo credit: Lee Narraway

By David H. Blakey, D. Phil.

There I was, 63 years old, sitting in my 1997 Hudson single behind the start line for the 2015 Head of the Madawaska regatta in eastern Ontario. Cold rain was teeming down as we waited to be called to the start. I had promised myself months earlier that I would race again some day. It had been ten years since I last raced. But this was no ordinary challenge. It wasn’t enough to attain the necessary fitness to race, nor the control of balance and timing in the hull that was only 11 inches wide at its widest point. This was all out war against a disease that was robbing me of my physical being, Parkinson’s disease. This was my Everest.

In the summer of 2011, I went to see the doctor because I was having trouble handwriting. I had also stopped swinging my right arm when I walked, which I had initially attributed to a stressful job. The doctor didn’t like the way I looked and sent me for an assessment at the Ottawa Hospital Neurology Clinic. After some seemingly unusual tests, I was told that I did indeed have Parkinson’s disease.

At first, the disease did not seem to have a very profound effect, but eventually my gait and fine muscle control became impaired. Everything I read emphasized the importance of exercise in coping with Parkinson’s disease. I began to exercise seriously, both in the gym under the guidance of my physiotherapist, and by doing the two physical activities I loved the most; cycling and rowing.

Although the medication I was taking initially worked very well, I eventually developed problems doing aggressive exercise. When I cycled, I had balance problems and my legs couldn’t keep up with the pedals. When I rowed, my balance was poor and I could not keep up with the desired stroke rate. This happened when I was rowing my single alone and also when I rowed in a four-man boat, called a quad, with three of my rowing friends who were willing to tolerate my new reality. These deficiencies were hard to take. I had always been a keen cyclist, biking to work since I was a grad student until I moved so far from work that riding to work became impractical. I had rowed for about as long. To be clear, I am not a natural athlete and I was no super star at either activity, but I loved both sports. Given my size and shape, finishing a race in the middle of the pack was a good result.

Since the onset of the disease, my rowing had been getting steadily worse. Early on, I fell out of the boat twice after not doing so for almost thirty years. I became so unsteady in the boat that I couldn’t row safely on the Ottawa River, where the Ottawa Rowing Club is situated. I eventually began rowing occasionally on the Madawaska River, an hour west of Ottawa, where the water is calmer, shallower, and cleaner. Even there, I was still off balance and rowing poorly. My cycling continued to be slow and unsteady.

In the fall of 2014, my neurologist gave me a different medication to try when I was going to exercise. It worked really well and I was rowing and cycling as though I had never been diagnosed with a chronic disease. I was soon able to return to rowing on the challenging waters of the Ottawa River and I was cycling with greater control and speed. Rowing has been compared to a combination of weight lifting and golf, requiring the strength of weight lifting and the finesse of golf. You use most of your body and technique and timing are so important. The oars have to be manipulated through a complex series of movements with precision or you will swim. Regaining the ability to row, let alone to compete, took a serious effort and I have many people to thank who helped. None of this could have happened without my physiotherapist at NeuroLogic Physiotherapy in Nepean, who prepared me mentally as well as physically, teaching me to appreciate what I had rather than dwelling on what I had lost. My sincere thanks go to the management at the Ottawa Rowing Club who allowed me to keep my boat in their boathouse, while I was not really rowing enough to qualify for a rack, and the incredibly kind people at the Burnstown Rowing Club who welcomed me to row off of their docks and offered to accompany me when I rowed in case I had an accident.

Having vastly improved my performance on the river and the bike paths, I decided to commit to rowing a head race in the fall of 2015. In a head race, rowers are timed as they row over a set distance, much like a 10k running race. To prepare, I rowed as much as I could and when I didn’t row, I often biked so that I was reasonably fit. The day of the race at the Burnstown Rowing Club on the Madawaska River was coming. I had agreed to referee at the regatta (I am a licensed referee), so, I would be at the race site anyway. It was with great trepidation that I took my boat to the Madawaska course. Despite the progress I had made in pushing back against Parkinson’s disease, I was still not able to row as I did when I was younger. Early on, I seemed to have lost my muscle memory, but lately, it seemed to be back. But was that enough? I was terrified of making a fool of myself.

I finished the race. It wasn’t pretty, but I did it. I had trouble breathing and had to stop during the three kilometre race to catch my breath. Nevertheless, this was a massive victory for me. I didn’t win the race, but I didn’t come last either, and I gained so much in the process. This was an accomplishment that will give me the strength and willpower that I will need to face future challenges as I continue to live with Parkinson’s.

I learned some important lessons along the way. You can live a good life with Parkinson’s disease, but you have to push back against the debilitating effects of the disease. You have to exercise, exercise, exercise. Find something you love and do it. It doesn’t matter if you win the race or cycle, swim, or run the fastest, just do it. The victory is in the doing. I am convinced that it allows me to have a better day if I exercise. Finally, set a goal and build a team to help you achieve that goal.

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It’s always the season to care

Joyce Gordon
Joyce Gordon

Hope and optimism are two important characteristics shared by many people with Parkinson’s. Whether you have recently been diagnosed, or you are in your second or third decade of caring for a person with this life-changing disease, we hope you know that you can depend on our support. And we’re able to provide that support in a variety of ways, thanks to the generosity of our donors.

During the past year, our 50th anniversary, our National Information and Referral Centre responded to more than 6,000 calls and emails, guiding the way for many individuals. Each and every call and request is responded to with warmth, empathy and knowledge, and a customized solution based on each individual’s needs.  Many of our requests for information come from professionals, like nurses and personal support workers, as well as from family caregivers.

Accordingly, our education initiatives this year have focused on those who care for people with Parkinson’s – both health care professionals and family caregivers. Last week we broadcast our first webinar created specifically for caregivers, in cooperation with the Alzheimer’s Society and the MS Society of Canada. Taking Care of Yourself Through the Ups and Downs of Caregiving, addresses some of the stress-inducing issues that caregivers themselves told us were a challenge. We look forward to holding another caregiver webinar later this winter, as well as one in French.

We continue to offer health care professionals our first online learning module, which is accredited by the College of Family Physicians of Canada for Continuing Medical Education (CME) credits. A second online learning module will be available early in 2016. Our staff also attended the Family Medicine Forum, meeting doctors from across the country and providing them with educational resources for themselves and their patients with Parkinson’s.

Improving everyday life for people with Parkinson’s and their caregivers was also top of mind during the recent federal election campaign. More than 160 volunteer Parkinson’s Ambassadors, representing every province, met with candidates to advocate on behalf of the Parkinson’s community.  As a key member of other health-related coalitions, our advocacy efforts met further success in 2015 with the federal government extending the Compassionate Care Benefit for caregivers to six months and the Public Health Agency of Canada now gathering statistics on people with Parkinson’s and their care needs.

Parkinson’s research also plays a pivotal role in realizing our vision: “A better life with a brighter future for Canadians living with Parkinson’s today. A world without Parkinson’s tomorrow.” Since the creation of the National Research Program (NRP) in 1981, Parkinson Society Canada and its network of partners have invested more than $25 million in 483 awards, fellowships and grants that have revealed more about diagnosing and treating Parkinson’s disease and advanced our knowledge towards a cure.

Parkinson Canada logo

This holiday season we are coming together and strengthening our commitment to the Parkinson community. On January 1, 2016, we will formally change our name and become Parkinson Canada. We will proudly continue to serve you, while operating as an efficient and effective health charity.

I want to wish you and your family a wonderful holiday season and all the best for a joyous 2016. I’d also like to extend my heartfelt gratitude to each of our donors, partners, volunteers, researchers, health care professionals and staff, who all help us to help those affected by Parkinson’s to live their best life possible.

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Chelsie Kadgien is tracking the transportation gene

Chelsie Kadgien
Chelsie Kadgien

Discovering the function of specific genes is a critical step in the search for the cause of Parkinson’s disease.  At the University of British Columbia, neuroscientist Chelsie Kadgien focuses on a particular gene called VPS35 that, when mutated, causes late-onset Parkinson’s.

Using a thin layer of brain cells grown on a glass culture, Kadgien, a PhD student, investigates the function of VPS35. So far, she and her colleagues believe this gene is involved in transporting proteins within brain cells. Some of the other proteins that VPS35 moves around are important links in the way brain cells communicate – a critical function that keeps the cells, and the entire brain, healthy.

“Neurons have an ideal amount of communication that they receive from other cells,” Kadgien says. If brain cells don’t get enough communication, they can die. If they get too much, they use up so much energy trying to interpret that communication that they become exhausted, which can also kill them.

Kadgien believes brain cells that contain mutant forms of VPS35 have too many receptors on their surface, causing them to receive too much communication. If she can confirm her theory, using not only cell cultures, but animal models, she will open up avenues for new drugs that might disrupt or correct this particular pathway in the brain that is damaging communication and killing brain cells.

“We want to understand how this particular mutation is affecting cells,” she says. “Ideally, we would like to find a good target for a therapeutic intervention.” Kadgien recently received a two-year, $30,000 graduate student award from PSC’s National Research Program, which will help fund her research project.

Kadgien’s interest in Parkinson’s disease began when she interviewed people with dementia and their caregivers as part of her work on a B.C. study on medication for neurodegenerative diseases. “I got really frustrated with my lack of ability to help those people,” she says. “They would call me looking for some sort of hope, and there wasn’t really anything I could give them.”

So Kadgien decided to focus her energy on biological research to develop a solution. One of her grandmothers and a grandfather had different forms of dementia, so she has also seen the effects first-hand. “I find it very motivating,” she says.

Read about other researchers funded this year by PSC’s National Research Program.

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An interview with Jon Palfreman

Jon Palfreman
Jon Palfreman, author of Brain Storms and a person living with Parkinson’s.

Jon Palfreman, author of Brain Storms, My Fight Against Parkinson’s and the Race to Unlock the Secrets of One of the Brain’s Most Mysterious Diseases

The following is an edited and condensed version of our telephone interview with Jon Palfreman on November 11, 2015.

ePP: First, thank you for writing such an informative and readable book about Parkinson’s disease. Brain Storms portrays the long journey full of the disappointments and the excitement of scientific discovery in the search for a cure and better treatments. The book interweaves this research story with the very human experiences of individuals, including you, who are living with Parkinson’s.

ePP: In January 2011 you were diagnosed with Parkinson’s disease. You kept the diagnosis largely to yourself for close to a year. Tell me about how you were feeling during that time.
JP: Like most other people I was in shock. For as long as possible you want to blend in with the world of the well. It takes time to process the information. You’d think I’d have a more sophisticated response, but my previous knowledge of Parkinson’s disease and research, didn’t make any difference to my reaction to the diagnosis. It just takes time to adjust. You need to grieve your former life and self and come to terms with a new reality. After about a year, I realized it was not going to go away and I realized it was my destiny to do something about it, using my skills as a journalist and my insights as a patient.

ePP: When did you decide to write Brain Storms? How did you determine your approach – blending research and personal stories – even personal stories about the researchers?
JP: It was about finding the right voice. It had to be based in journalism, not a memoir. But I am there staging the story, in the same way as a correspondent in a documentary – not dominating the conversation, but guiding the reader. I wanted to tell an actual story, including patient stories, with hope for the future. I wanted to balance truth and hope.

ePP: How has your Parkinson’s diagnosis affected your career? Are you working full-time? Retired? Teaching? Writing?
JP: I did retire earlier from teaching than I would have liked. I retired at the end of June this year (2015.) I’ve stopped directing documentaries, which often involve international travel. Now I concentrate on my journalism work, my writing.

ePP: What advice do you have for others about disclosing your diagnosis to professional colleagues?
JP: You do it when you are ready. Michael J. Fox kept it secret for seven years, which I find incredible. Eventually you will be found out. When I was working on Brain Storms, when I interviewed researchers on the phone, or if they were lab researchers, I did not mention that I was also a patient. But when I met clinicians in the flesh, I told them up front that I had Parkinson’s, because I knew they would recognize it immediately.

ePP: You are married and have three grown children aged 22, 27 and 31. How has your family reacted to your diagnosis?
JP: Just like the person with Parkinson’s (PD), family members go through their own processes of denial and come to acceptance in stages too. My kids did not really confront my PD, or even want to know about it, until they read the book. People only confront what they have to confront. My kids are still coming to terms with it and adapting.

My wife power walks with me most days, challenging me to keep up with her. There is a story in my book about how vigorous, challenging, exercise can be beneficial to people with Parkinson’s.

ePP: It can be a delicate balance for family members between helping out and helping the person with Parkinson’s maintain their independence. What advice would you give to family members and caregivers about how to help their loved one with Parkinson’s disease?
JP: Family should be sympathetic, but still hold you accountable. Also, you need to keep in mind that Parkinson’s is incredibly variable – some tasks will be easier for some, than for others. Don’t compare what one person can do with another. Most importantly, family and friends need to help keep you engaged in life.

The biggest risk is to withdraw from your life and activities and social interaction – you lose your confidence. You can be embarrassed by things like the difficulty of getting a credit card out of your wallet, or of eating in a restaurant. You need to do your best to do as much you did before. Some tasks, using fine motor skills, like doing up buttons, are more difficult. You may need help. But, give things a try and you’ll be surprised by what you can do. In recognizing your limitations, you also need to learn to ask for, and accept, help.

ePP: Even before your PD diagnosis and this book, you’d interviewed some of the world’s leading PD researchers. Are there characteristics you think they have in common? What do you think drives them in what is often a very long and frustrating endeavour?
JP: Biomedical research is very slow and often involves basic science. The brain is such a mystery. Unravelling a disease like Parkinson’s is so complex, with only a remote chance that your research will result in a cure. The idea of helping people with the disease is the motivating factor for most researchers.

Parkinson’s patients are also in relativity good shape compared to many others that researchers are working to help, like those with Huntington’s, certain cancers, or ALS. There is plenty of interaction between Parkinson’s patients, clinicians and researchers. This helps with their motivation; they see the people behind the condition.

ePP: What messages do you deliver to Parkinson’s disease researchers?
JP: There are still a lot of mysteries; so many unknowns about Parkinson’s. Levodopa is still largely delivered the same way it was decades ago. Progress seems slow, especially when we look at how far we’ve come in other realms of biomedical research, for instance, science has mapped the human genome. And a huge world is involved in biomedicine, including governments, pharmaceutical companies, research institutes and universities. The clinical trials are long, labourious and expensive. Decades go by without much progress. For instance, alpha-synuclein was implicated in Parkinson’s disease in 1997 – almost two decades ago now – yet there has been little progress. It all takes so much time.

ePP: What do you see as the most exciting research developments for the future?
JP: Right now, the biggest development would be to be able to dissolve the toxic species of alpha-synuclein, which could be the cause of dozens of symptoms in many brain regions. Understanding the root cause of Parkinson’s would be a major development. And finding an agent that reduces the amount of alpha-synuclein; that would be the biggest thing at the moment.

Some advances in current therapies would also be welcome. There are some new methods of delivering Levodopa, using a pump or a once-a-day patch, to deliver a more continuous dose. There have also been developments is DBS (deep brain stimulation) surgery, with the aim of a closed feedback loop delivery of DBS, delivering stimulation only when needed.

ePP: You write about the dancer Pamela Quinn in your book and some of her advice to those with PD about re-training your body, like learning to walk with your legs first like a model, or unfreezing by stepping sideways first, like a penguin. Have you had to practice any of these things?
JP: (chuckles) I do try to walk like a model – feet first. It actually helps to combat the stooped posture of Parkinson’s.

ePP: You also write about a man who could barely walk, yet had no trouble riding a bicycle. Have you experienced any such paradoxes in your own abilities?
JP: It’s extraordinary that the Parkinson’s brain takes up some abilities intact. That’s why it’s good to try things you used to do. You may still be capable of quite a lot. Capabilities are so unpredictable, like this fellow, you may be able to ride a bike, but not walk. It’s evidence of the complex and unpredictable circuitry of the brain.

ePP: How are you doing today – physically? What treatments do you undertake?
JP: I’m still quite mobile and walk about 90 minutes every day and at a good pace. Exercise – strenuous and consistent – does seem to help everything. Fine motor skills are different for me – handwriting is difficult. Like everyone, I have good days and bad days, for no apparent reason. One day I may feel fine and then the next day, you can feel anxious or jittery. Medication, and the timing of it, can have an impact too. It’s not just the inputs, it’s also the outputs. Your nervous system just seems more fragile. I’m much less resilient to jet lag.

I know that compared to others, with much more fatal diseases, like Huntington’s, ALS, or terminal cancer, I’m not doing too badly. I am actually grateful. We ‘Parkies’ are lucky that we have a drug available, even with its side-effects that can treat our symptoms. Thanks to Levodopa we can live many productive years.

ePP: How has your Parkinson’s diagnosis affected your view of the future? What do you do to stay hopeful?
JP: I know my Parkinson’s will reduce my lifespan. But it has changed my perspective. When your time is limited, you want to spend that time as well as possible and “seize the day.” When you have Parkinson’s, your future has changed. You are involved in a struggle you are not going to win. It has a profound impact on the rest of your life.

ePP: Has PD added anything positive to your life?
JP: Yes, mainly because I’ve become a member of a Parkinson’s “tribe.” I’ve met people I never would have met, many brave, inspiring, individuals. It has been the greatest pleasure, to experience this camaraderie with others who have so much in common.

ePP: What advice would you give to others with Parkinson’s, especially those who are newly diagnosed? How do you suggest others learn about Parkinson’s, gain confidence and participate in their own care?
JP: Be as well informed as possible. It may be useful to read my book.  Know what to expect in the future. Psychologically, try to get to a place where you can be as engaged and confident as you can.  You’ve got to struggle against the tendency to isolate yourself. Learn how to ask for help when you need it.  There are so many willing to help you, if you reach out.

ePP: What do you fear about your future with PD?
JP: I think most people with Parkinson’s fear how they will die. I do not find this thought process fruitful. People die with Parkinson’s, not from Parkinson’s. It’s too grim to contemplate death all the time.

ePP: Who inspires you?
JP: I am inspired when I see people who are worse off, further along with Parkinson’s, who are still participating in the world. People with young-onset Parkinson’s are often the most inspiring. For me, Parkinson’s is not as tragic. I’ve had a good life already. By getting Parkinson’s at age 60, I don’t feel as cheated. I think it’s a much rougher deal getting it early. Many of these people with young-onset Parkinson’s are most impressive.

About the author: Jon Palfreman, PhD, is Professor Emeritus of Journalism at University of Oregon and a prize-winning science journalist and producer of more than 40 documentaries for the BBC and PBS. Now 65, he currently lives in Lexington, Massachusetts.

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This holiday season, we can triple your support for Parkinson’s

Triple your gift

This December, your gift to Parkinson Society Canada will be tripled by an anonymous donor, up to $50,000! Your donation will ensure that together we can continue to fund essential research, education for healthcare professionals, and support and advocacy initiatives for people with Parkinson’s disease.

As you know, Parkinson’s is a brain disease that gets worse over time, robbing adults of their independence. There is no cure and current treatments address only the symptoms. There is no way to slow the progression of the disease itself.

With 10 people being diagnosed with Parkinson’s disease every day, your gift will ensure that Parkinson Society Canada is able to provide support and hope to the growing number of Canadians affected by Parkinson’s disease. Together, we can provide a better life with a brighter future today and a world without Parkinson’s tomorrow.

Make a gift of hope this holiday season and show your support today.

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Our pledge to you and yours

At Parkinson Society Canada we put people with Parkinson’s first. Always.

We do this, in large part, through our steadfast commitment to ethical and transparent fundraising practice. We’ve worked hard to gain your trust and your investment in our movement to end Parkinson’s disease and improve life for those living with the disease. We recognize it is our duty to honour your support.

It is important to us to instill the confidence of our organizational ethics in our respected community of supporters. We go beyond the expectations of the law and the Canada Revenue Agency. We have earned accreditation from Imagine Canada. Out of 80,000 charities in Canada, we are one of only 150 organizations to achieve this distinction.

As an honoured member of Imagine Canada’s Standards Program, Parkinson Society Canada has achieved exceptionally high standards in the areas of policy and public representation, fundraising procedure, and fiscal responsibility and transparency.

We care deeply about the people who we serve. We respect our responsibility to protect the legacy of Parkinson Society Canada by guarding the rights, dignity and privacy of our supporters and beneficiaries. Please know that we will use your donation effectively and as you have indicated. Our pledge is to treat all of our supporters with respect, honesty and accountability.

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Diagnosing and treating cognitive deficits with Parkinson’s disease

Sean Udow
Dr. Sean Udow

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.

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New government, new opportunities

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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 advocacy@parkinson.ca and someone will be in touch with you. To find out more about the Ambassador program, visit: parkinsonambassador.ca.

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