Archive for June, 2013

Message from the Editor

We all know that living with Parkinson’s isn’t easy. With the right information people with Parkinson’s can empower themselves to make informed treatment choices for their own care. That’s what the June issue of e-Parkinson Post is all about; empowerment for individuals in the Parkinson’s community.

In this issue we talk about the Canadian Clinical Guidelines on Parkinson’s disease, which educates and informs people with Parkinson’s, allowing them to make informed decisions together with their doctor and other health professionals about treatment options such as medications, exercise and even surgery.

We’ve also got some exciting news from the Canada’s Parkinson’s research community. Researchers at McGill University, led by Dr. Edward A. Fon and Dr. Kalle Gehring, have discovered the three-dimensional structure to the protein Parkin. This new knowledge could help scientists develop better treatments for Parkinson’s and even slow down the progression of the disease.

World Parkinson Congress is rapidly approaching and with less than four months until we gather in Montreal, we’re showcasing some of the seminars and workshops that will be running at WPC in October. Remember, registration is now open to the public and the early bird registration deadline ends July 2, 2013. If you want to attend please visit the WPC registration page online and sign up!

Enjoy these updates and send us your comments. We’d like to hear from you.

McGill Parkinson’s Researchers Make Landmark Discovery

Dr. Edward Fon

Leading researchers at McGill University, funded in part by Parkinson Society Canada (PSC)’s National Research Program, have made a breakthrough that could lead to new drugs which may slow the progression of Parkinson’s disease.

Dr. Edward A. Fon at the Montreal Neurological Institute and Hospital -The Neuro, and Dr. Kalle Gehring in the Department of Biochemistry at the Faculty of Medicine led collaborating teams to discover the three-dimensional structure of the protein Parkin, a component of a system that mediates the targeting of proteins for degradation in the brain.

This discovery resulted from several years of work by the collaborators, and was made possible in part through a PSC $45,000 Pilot Project Grant to Dr. Gehring in 2011 and as well as the Porridge for Parkinson’s (Toronto) Pilot Project Grant of $45,000 in 2012. Additional funding was provided by the Canadian Institutes for Health Research, and infrastructure support from the Fonds de recherche Québec and the Canada Foundation for Innovation.

Dr. Kalle Gehring

“If we can reproduce this response from our research findings with a drug rather than mutations, we might be able to slow the progression of disease in Parkinson’s patients,” said Dr. Gehring.

For more information, click to read the full press release or watch this CTV interview with Dr. Fon.

The 10th Donald Calne Lectureship – SAVE THE DATE

Dr. Virginia M.-Y. Lee, 2013 recipient of the Donald Calne Lectureship Award.

Parkinson Society Canada announces Dr. Virginia M.-Y. Lee, Professor at the University of Pennsylvania School of Medicine is this year’s recipient of the Donald Calne Lectureship.

Dr. Lee is internationally recognized for her work on the etiology and pathogenesis of alpha-synuclein, tau, TDP-43, and other misfolded disease proteins in the pathobiology of neurodegenerative diseases, including Alzheimer’s disease (AD), Parkinson’s disease. Other research efforts focus on an increased understanding of the collaborative initiatives to advance drug discovery in Alzheimer’s and Parkinson’s diseases.

The Donald Calne Lecture, presented by Parkinson Society Canada and co-sponsored by AbbVie Canada, takes place during World Parkinson Congress, the evening of October 3, 2013 in Montreal.  Learn more about Dr. Virginia Lee and the Donald Calne Lectureship on Parkinson Society Canada’s website.

“We are very proud to be supporting the Donald Calne Lectureship.  Sharing information via world renowned researchers, such as Dr. Virginia M.-Y. Lee, is crucial for the scientific community, those living with Parkinson’s disease and their families,” says Felipe Pastrana, General Manager of AbbVie Canada.

Parkinson’s Buddies Program – Making Global Connections

Bill Sloan, WPC Buddy Program Administrator and a person with Parkinson’s

When you have Parkinson’s, navigating new relationships and social situations can be difficult. Between the debilitating and sometimes embarrassing symptoms, such as issues with speech and cognitive dysfunction, and the constant need for medications finding common ground with a new friend can be illusive. That’s why organizers of the World Parkinson Congress (WPC) 2013 launched the Buddies Program, an international social connection available to all registered participants of WPC.

The  Buddies Program initiative aims to strengthen the Global Parkinson’s community by matching WPC registrants with Parkinson’s from abroad to Canadians with Parkinson’s disease who are attending Congress.

“People can become isolated. This can help them reach out to others with Parkinson’s. With the internet we can travel long distances in short times and communicate. Whether you have Young Onset or more advanced Parkinson’s you can meet up with a buddy you can relate to; someone of similar age and situation,” said Bill Sloan, WPC Buddy Program Administrator and a person with Parkinson’s.

About the Buddies Program

Once people with Parkinson’s sign up to attend WPC they will be prompted to engage in the optional Buddies Program. Attendees who opt into the program will be matched with other buddies from around the world. Even spouses are included in the program if they choose. Matched buddies are then free to communicate online leading up to WPC and hopefully beyond. Having a friendly face to greet participants in a new venue can reduce the anxiety and uncertainty of travelling away from home.

Program administrators think the Buddies Program, primarily for English speaking attendees, and the connection to someone with similar experiences will make the travelling and transition easier to handle.

“For those coming to Congress it will be wonderful to have a connection to look up when you get to Montreal. Being in a foreign place can be intimidating. Having somebody to meet makes it feel more like home,” said Marjie Zacks, Chair, WPC Global Communications Committee.

“Our attendees are curious. They want more knowledge about Parkinson’s. What better way to learn than directly from other people living with Parkinson’s,” added Louise LeBlanc, Coordinator of Volunteers for Parkinson Society Canada Central & Northern Ontario.

Organizers believe the long-distance relationships can provide a valuable service for those who get involved. And the benefits can extend beyond the four- day experience of the official event.

“It is difficult to be open about your Parkinson’s disease. It takes a lot of courage to share it with family and friends and the Buddies Program allows for a certain amount of discretion,” said Zacks.

“It may start with email. We’d love to see people use Skype or communicate online. It’s our hope that some long-term friendships come out of this. Some countries are more advanced with Parkinson’s research than others. Maintaining these relationships will keep communications and sharing of experiences going,” said LeBlanc.

The WPC brings together all stakeholders in the Parkinson’s community, including scientists, advocacy groups, and organizations like Parkinson Society Canada, and because the conference is set up by people who understand the Parkinson’s experience, the Buddies Program will enrich an already enlightening forum.

“The Buddy Program has given me the privilege and opportunity to meet a number of people living with Parkinson’s throughout the world. It gives me a sense of “belonging” hearing some of the stories of those inflicted with this Neurological Disorder. It is extremely rewarding matching up two or four individuals (couples) that I believe are a terrific fit,” said Sloan.

Sloan looks forward to meeting all his new “buddies” in Montreal and finding out about Parkinson’s experiences around the globe.

To date 52 matches have been made in the Buddies Program with 33 people ready to be paired.

Buddies Program Quick Facts

Here are some quick facts about WPC and the Buddies Program:

  • Participation is available to all registered World Parkinson Congress attendees but is not mandatory
  • Participants will complete a short online survey to capture relevant information such as age, gender, stage of Parkinson’s, year of diagnosis, language preferences and personal interest to ensure the most appropriate match
  • Spouses and care partners can participate. Some couples have already been matched with other couples
  • Buddies will have special benefits at the WPC in Montreal including a relaxation room

For more information on the Parkinson’s Buddies Program please visit the World Parkinson Congress Buddies Page at http://www.worldpdcongress.org.

Multi-language Program Appeals to WPC International Audience

WPCsign_ENThe third World Parkinson Congress takes place in Montreal, Canada for the first time ever from October 1 – 4. Presentations from scientists and researchers on Parkinson’s disease will touch on everything from recent lab discoveries to workshops on quality of life and comfort, with some being offered in French and English.

Parkinson Society Canada is honoured to take the baton from Parkinson’s UK, the previous WPC host, and welcome more than 100 World Parkinson Coalition organizations from around the world.

Day 1

Day 1’s theme is ‘Why and how specific neurons die in Parkinson’s disease and what can be done about it?’ and kicks off with a plenary session in both languages with additional presentations occurring throughout the day. Researchers from four countries will be providing four lectures over the session. Attendees will learn:

  1. About new mechanisms of neurodegeneration of Parkinson’s disease
  2. To understand the multifaceted nature of the neurodegenerative process in Parkinson’s disease
  3. To acquire knowledge as to how basic science may help in treatment for Parkinson’s disease


Day 2

The theme for day 2 covers ‘Non-motor manifestations of Parkinson’s disease’. Various poster presentations will occur throughout the day such as the Tricks of the Trade Workshop where clever strategies to improve mobility will be shared. Attendees will learn to:

  1. Explore clever strategies to overcome challenges to daily mobility (suggestions from professional and PWPs)
  2. Demonstrate the integration of strategies to improve mobility into daily life (videos, live demonstrations)
  3. Discuss potential mechanisms underlying strategy effectiveness.

Day 3

The final day of WPC wraps up the conference with discussions on ‘New views on the management of Parkinson’s disease’. One of the theme-related presentations on day 3 will cover Neurobiology and treatment of dyskinesias as a Parallel Session. Researchers from four countries collaborated to pull together the session and hope that the talks will increase knowledge and understanding surrounding movement disorders.

WPC has multiple informative sessions and seminars daily for people with Parkinson’s disease, researchers and policy makers from around the globe. Visit the WPC website for a complete rundown of the World Parkinson Congress program and schedule.

Editor’s Note: We advise that you have the WPC program on hand for the registration process, and don’t forget to check out the Parkinson’s Buddies Program to enhance your WPC experience even further.

Canadian Guidelines on Parkinson’s Disease – Celebrating the First Year!

The Clinical Guidelines on Parkinson’s Disease allows doctors and patients to make the best care and treatment decisions together.

When Parkinson Society Canada (PSC) set out to create the Canadian Guidelines on Parkinson’s Disease with the help of Canadian experts, the goal was to give health care professionals from across the country a set of standards to diagnose and treat cases of Parkinson’s with consistency. PSC also wanted to empower people with Parkinson’s by presenting evidence-based treatment options and information so individuals can participate in their care decisions with their doctor and other specialists.

Since the publication of the guidelines in July of 2012 countless doctors, nurses and people with Parkinson’s have benefitted from this informative resource.

“The guidelines tell patients what options are available to be able to discuss with their doctor. It is a dialogue, rather than one-sided. Patients need to understand range of drugs, side effects etc.,” said Dr. Susan Fox.

The Canadian Guidelines on Parkinson’s Disease also works as a bridging tool between doctors and their patients. The guidelines promote a person-centred approach to care and call for open communication between health care professionals and patients to increase the quality and effectiveness of treatment plans.

“The guidelines offer recommendations on treatment options in addition to medication such as the role of physiotherapists, speech language therapy and occupational therapy to help manage Parkinson’s symptoms. These treatment options give the person control in managing their Parkinson’s; for example, they can choose the type of physical activity that suits them and improve their overall quality of life,” added Barbara Snelgrove, Director of Educational Programs with Parkinson Society Canada.

The guidelines also help doctors deliver the information to their patients in an effective manner. When using the guidelines health care professionals are asked to consider:

• Style, manner and frequency of communication that is compassionate and respectful

• Ease of access for those receiving information in a timely and appropriate manner throughout the progression of Parkinson’s

• Honesty and sensitivity in tailoring information to meet changing medical needs

• Encouragement of self-management by people with Parkinson’s to meet individual needs and preferences

• Inclusion of caregivers who are also affected by Parkinson’s and require information and support

“The guidelines may assist in what drug options are available and which are the best and safest to use. It may also advise the non-expert on drugs they are not aware of and give them confidence to be able to treat patients,” said Dr. Fox.

“The guidelines are a valuable resource because they set a standard of best practice for all health care professionals,” added Snelgrove.

For more information on the Canadian Guidelines on Parkinson’s Disease please visit the clinical guidelines website and download your free copy or contact Barbara Snelgrove at Parkinson Society Canada.

THE PARKINSON TOURIST

Where in the world is Parkinson?

Parky’s Store in Northbrook, Ontario

Parky’s Store in Northbrook, Ontario

By Roger Buxton

We all know that James Parkinson, the English apothecary and surgeon, published An Essay on the Shaking Palsy in 1817 in which he identified the characteristics of paralysis agitans. So where in the world is the recognition for this man, some permanent tribute that we can visit for his accomplishments which were not only in the medical domain but also in geology, palaeontology, and social reform?

A plaque marks the location of the house at 1 Hoxton Square, Shoreditch, in which he was born, and the nursing staff at St. Leonard’s Hospital erected a memorial in his honour in 1955 in St. Leonard’s Church in which he was baptized, married, and buried. Several species of creatures which he found in fossils are named after him, and more recently a tulip variety was named after him.

But what of geographic features or places named Parkinson, and are any of those named after James? Our quest, then, as a tourist, is to find them and to find out.

An assortment of streets, avenues, lanes, drives, closes, and approaches in the United Kingdom are named Parkinson, but the origins of the names haven’t been investigated. But none are particularly grand, and there’s not even a pub!

In Canada, British Columbia takes first prize for the region with the most features named Parkinson, and Kelowna and nearby is the community with the most items: Parkinson Drive, Parkinson Way, Parkinson Lane, Parkinson Road, and Parkinson Recreation Park. Clearly, you had better know exactly which one you want if you want to reach your destination! Another Parkinson Road is in West Kelowna. Go 70 km north and you will find Parkinson Lake and yet another Parkinson Road.

The most scenic route is likely on British Columbia’s Vancouver Island. Take Parkinson Road (again) out of Port Renfrew to Botany Bay in Juan de Fuca Provincial Park. Then hike 10 kilometres along the Juan de Fuca Marine Trail to Parkinson Creek, and thence along the Parkinson Creek Trailhead Access Road to rejoin the West Coast Road.

However, most of these features do not refer to James.

The largest physical feature named Parkinson in Canada is the Township of Parkinson in Ontario, with the settlement of the same name. It is located about 15 kilometres north of Iron Bridge, which is on Highway 17 between Sudbury and Sault Ste Marie. The land was surveyed in 1879 and the town was probably named then, but unfortunately the origin of the name hasn’t been kept. It’s still a mostly agricultural community with a population of about 100. The only visual means to know you are there are the township markers on the side of the roads: otherwise, you have to ask the cows, but they don’t say much.

Parkinson Island and Parkinson Pothole are also located in Ontario, but neither are named after James. Likewise, neither the Parkinson Cemetery near Guelph nor the Parkinson Centennial Public School in Orangeville are named after James. Seven towns in Ontario contain roads named Parkinson. Parky’s Store, however appealing, doesn’t count.

The picture is pretty sparse elsewhere: Parc Parkinson in Québec, a residential court in New Brunswick, a boulevard in Florida, and some places in Australia.

So far, then, I have not found any feature in the world named in honour of James Parkinson. Therefore, I offer a beer to the first person who can find one and provides the provenance! Better still, how about a case of beer for the first person who succeeds in officially naming a new one in Canada? Don’t settle for a measly urban road or a paltry puddle, but paddle an expansive unnamed lake or put your foot atop a substantial unnamed mountain – after all, there are plenty of both – one big enough to be worthy of the great man, plant your flag, and declare it James Parkinson whatnot, and file all the paperwork to make it official and let the world know. Let the race begin! Better hurry: you want to do it before medical research makes Parkinson’s a footnote in history.

Note: Roger Buxton is the spouse of Judy Hazlett, who has been living with Parkinson’s for more than 30 years. His career has covered technical and management positions in the aerospace and environmental industries. A full version of this article, complete with references and photographs, appears in the Creative Expressions section on Parkinson Society Canada’s website.


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All material related to Parkinson's disease contained in Parkinson Post is solely for the information of the reader. It should not be used for treatment purposes. Specific articles reflect the opinion of the writer and are not necessarily the opinion of PSC.

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