Archive for June, 2012

Message from the editor

Welcome to the summer edition of e-Parkinson Post.

We’re thrilled to announce that the Canadian Guidelines on Parkinson’s Disease are finally here! This is a landmark achievement. It will mean so much to Canadians with Parkinson’s, knowing that whether you attend a movement disorder clinic in a large urban centre or a family practice in a smaller community, the same standards will apply for diagnosing and treating Parkinson’s across Canada. Parkinson Society Canada is undertaking a major information campaign to ensure that the guidelines are distributed as widely as possible to neurologists, family physicians and allied health care professionals.

In this issue, we bring you up to date on the good work that has been happening on Parliament Hill with members of the Parkinson’s community making presentations to parliamentary committee hearings.

October is going to be a busy month. We invite you to mark your calendars now for the prestigious Donald Calne Lecture which will take place in Vancouver, in October 2012. In October 2013, we hope to see you at the World Parkinson Congress in Montreal.

We congratulate the Early Bird Winners for Parkinson SuperWalk 2012. Online registration is open. If you haven’t registered yet, find a walk near you and register now at www.parkinsonsuperwalk.ca.

We want to know what you think about the newsletter and articles. Please leave a note in the Comments section. Your feedback will make this publication better. Don’t forget to pass along the link to someone you know so that they may enjoy it too.

Marjie Zacks
Editor

Parkinson Society Canada launches first Canadian Guidelines on Parkinson’s Disease

Parkinson Society Canada, in partnership with leading Canadian movement disorder specialists, has launched the first clinical guidelines for the diagnosis and treatment of Parkinson’s disease.

The Canadian Guidelines on Parkinson’s Disease will be published in the July 2012 issue of the Canadian Journal of Neurological Sciences and will include an executive summary and quick reference guide in English and French. They will be distributed to family physicians, pharmacists, nurses and allied health professionals including occupational therapists, physiotherapists and speech-language pathologists.

Before now, there has been no consistent standard by which Parkinson’s has been diagnosed or treated in Canada. The new guidelines are designed to provide health care professionals with practical clinical advice for the diagnosis and treatment of Parkinson’s, based on either the best published evidence or on expert consensus when there is a lack of evidence.

“Most Canadians with Parkinson’s do not attend specialized Parkinson’s or movement disorders clinics,” says Dr. David Grimes, Director of the Ottawa Hospital’s Parkinson’s Disease and Movement Disorders Clinic and editor of the guidelines. “A tool was needed so that all health care providers who treat people with Parkinson’s in Canada have a clear idea on how best to help individuals manage their disease. The guidelines are meant to improve the standard of care and access to care for people with Parkinson’s in all regions of Canada.”

The guidelines are the culmination of four years of development, sparked by a two-day meeting in January 2008, when 50 of Canada’s leading researchers and clinicians met with Parkinson Society Canada, to share ways to collaborate, promote and advocate for excellence in Parkinson’s clinical care and research.

The guidelines were written collaboratively by neurologists and movement disorder specialists from across Canada, with input from people with Parkinson’s, surgeons, family physicians, nurses, allied health professionals and Parkinson Society Canada. The 84 recommendations are designed primarily for family physicians, neurologists and other health care professionals, however they may also be helpful for policy decision-makers and funding bodies.

People with Parkinson’s are encouraged to let their health care providers know that the Canadian Guidelines on Parkinson’s Disease are available online at www.parkinsonclinicalguidelines.ca. The website and other materials relating to the guidelines have been made possible through unrestricted educational grants from Abbott Laboratories, Limited, Merck Canada Inc., Novartis Pharmaceuticals Canada Inc., Teva Canada Innovation and UCB Canada Inc.

The guidelines are endorsed by the Canadian Neurological Sciences Federation and Parkinson Society Canada.

Key topics

Communication

The guidelines call for a person-centred approach to care and treatment, with open and honest communication between the health care professional and the person with Parkinson’s. The recommendations state that people with Parkinson’s should have the opportunity to make informed decisions based on full disclosure of all relevant information and that care decisions should be based upon best available evidence and provided according to applicable professional standards. They also suggest that families and caregivers be given information not only about Parkinson’s but also about entitlements to care assessment and available support services.

Diagnosis and progression

The guidelines highlight the need for clinicians to differentiate Parkinson’s from other forms of parkinsonism and to distinguish it from other causes of tremor, such as drugs, neurotoxins and structural brain lesions. They recommend prompt referral to a specialist with expertise in the differential diagnosis of Parkinson’s and outline the complexity of Parkinson’s and the substantial variation of symptoms from person to person.

Treatment

The guidelines acknowledge that there is a wide range of treatments for Parkinson’s symptoms, including medications, surgical procedures, physiotherapy, occupational therapy and other support services. The guidelines suggest that these treatments can have a significant impact on improving quality of life and should be available.

Non-motor symptoms

An entire section is devoted to non-motor features of Parkinson’s, such as mental health problems – depression, psychotic symptoms, dementia; sleep disorders; autonomic dysfunction – urinary dysfunction, weight loss, constipation, erectile dysfunction, among other examples. The guidelines recommend that people receive appropriate treatment for these symptoms that can contribute to increased disability and have a negative impact on quality of life.

Parkinson Society Canada 2012-2014 National Research and Clinical Program Autumn Awards announced

Parkinson Society Canada (PSC) is pleased to announce the award results of the 2012-2014 Autumn cycle competition for its National Research and Clinical Program.

Commencing July 1, 2012, Parkinson Society Canada and its regional partners are proud to be able to invest $405,000 in the following awards:

  • PSC – Teva Canada Innovation Clinical Movement Disorder Fellowship: Madeleine Sharp
  • Clinical Research Fellowship: Andre Felicio
  • Graduate Student Awards:

Leigh Christopher

Valerie Lefebvre

Leigh McIntyre

Omid Tavassoly (supported by Parkinson Society Saskatchewan)

Mabel Ao (supported by Parkinson Society Ottawa)

  • PSC / CIHR-INMHA Psychosocial Doctoral Award: Kaylena Ehgoetz Martens

Committee news

We would like to express our thanks to outgoing Scientific Advisory Board members: Dr. Susan Fox and Dr. Francesca Cicchetti and outgoing Research Policy Committee members: Dr. Jim Emmett and Mr. Barry Johnson. Their dedication and commitment to the Parkinson’s community has been invaluable.

We welcome Dr. Ronald Postuma (McGill University Hospital Centre) and Dr. Bin Hu (University of Calgary) to the Scientific Advisory Board. We also welcome Dr. Daniel Levesque (University of Montreal) to the Research Policy Committee.

Dr. Ronald Postuma (McGill University Hospital Centre)

Dr. Bin Hu, Departments of Clinical Neurosciences/Cell Biology & Anatomy, University of Calgary

Dr. Daniel Levesque – Faculty of Pharmacy, University of Montreal

The 9th Donald Calne Lectureship awarded to Dr. Matthew Farrer

Dr. Matthew Farrer

Dr. Matthew Farrer

Parkinson Society Canada is pleased to announce the recipient of this year’s Donald Calne Lectureship is Dr. Matthew Farrer, Professor in the Department of Medical Genetics and Director of the Centre for Applied Neurogenetics in the Brain Research Centre at University of British Columbia (UBC), in Vancouver, BC.

Dr. Farrer receives this honour for his work as an ambitious researcher who has made several influential discoveries in neurogenetics and who has 271 peer-reviewed publications to his credit. He is internationally renowned for his work on the genetics of Parkinson’s disease and his contribution to the field of Parkinson’s research. Dr. Farrer is Canada Excellence Research Chair in Neurogenetics and Translational Neuroscience and the Dr. Donald Rix B.C. Leadership Chair in Genetic Medicine at UBC.

Dr. Farrer has established a Centre for Applied Neurogenetics (www.can.ubc.ca) at UBC, where he and his colleagues are working to pioneer new strategies for early detection and improved treatments for neurodegenerative diseases including Parkinson’s, Lewy body dementia and related movement and memory disorders.

Dr. Farrer holds a PhD in human genetics from St. Mary’s Hospital Medical School, Imperial College, London, UK, and a bachelor’s degree in biochemistry from King’s College, London, UK. He was also a post-doctoral fellow in medical and community genetics at the Kennedy-Galton Centre of Medical and Community Genetics, St. Mark’s Hospital, Harrow, UK. Dr. Farrer was appointed to the Parkinson Society Canada Scientific Advisory Board in 2011.

Dr. Farrer’s lecture is titled, Parkinson’s progress: from molecular genetics to medications. Attendees will have an opportunity to ask questions afterwards.

Held annually in a different Canadian city, the Donald Calne Lecture is for members of the Parkinson’s community, including scientists. This year’s event takes place at Terminal City Club, Vancouver, BC, on the evening of Thursday, October, 18, 2012.

The Donald Calne Lectureship is a Canadian award, established in 2002, to honour Dr. Donald Calne for his outstanding service to the Parkinson’s community as Professor of Neuroscience, University of British Columbia and past chair and long-time member of the Scientific Advisory Board, Parkinson Society Canada. Each year, Parkinson Society Canada awards this lectureship to a distinguished neuroscientist of international reputation whose work is primarily in the area of Parkinson’s disease.

The Donald Calne Lecture is generously sponsored this year by Abbott Laboratories, Limited.

Past recipients are:

2010 – Dr. Stanley Fahn
2009 – Dr. Andres Lozano
2008 – Dr. J. William Langston
2007 – Dr. Anthony E. Lang
2006 – Dr. Jon Stoessl
2005 – Dr. Zbigniew Wszolek
2004 – Dr. Oleh Hornykiewicz
2003 – Dr. Yoshikuni Mizuno

Hold the date: 2012 Donald Calne Lecture

Date: Thursday, October 18, 2012
Time: 5:30 p.m.
Location: Terminal City Club, 837 West Hastings Street, Vancouver, BC V6C 1B6
Topic: Parkinson’s progress: from molecular genetics to medications
Presenter: Dr. Matthew Farrer, Professor, Department of Medical Genetics and Director, Centre for Applied Neurogenetics, Brain Research Centre, University of British Columbia

Advocacy Update

Joyce Baretto

Joyce Baretto

From the desk of Joyce Barretto and Yvon Trepanier, Co-Chairs, National Advocacy Committee

Parkinson’s issues were front and centre, in early spring, when the federal Standing Committee on Health held hearings to conclude the work of the former Subcommittee on Neurological Diseases that had been suspended due to the 2011 federal election.

Yvon Trepanier

Yvon Trepanier

  • David Simmonds shared his personal experience of living with Parkinson’s and undergoing deep brain stimulation surgery. Describing how Parkinson’s affects families, he pointed to the need for caregiver support.
  • Dr. Galit Kleiner-Fisman, Neurologist and Movement Disorders Specialist at Baycrest in Toronto discussed the value of multidisciplinary integrated care.
  • Joyce Gordon, Parkinson Society Canada President & CEO and Chair of Neurological Health Charities Canada (NHCC) raised the issue of educating front-line health workers and the general public about neurological conditions and expressed the need for better income security and caregiver support.

The committee also heard presentations from:

  • Dr. Bin Hu, Professor, Department of Clinical Neurosciences, University of Calgary;
  • Dr. Edward Fon, Director, McGill Parkinson Program and National Parkinson Foundation Center of Excellence, and Associate Professor, Montreal Neurological Institute, McGill University; and
  • Dr. Daniel Krewski, Director of the R. Samuel McLaughlin Centre for Population Health Risk Assessment at the University of Ottawa

who addressed the need for increased investment in neuroscience research and the importance of establishing a consortium of Parkinson’s Centres of Excellence in Canada.

NHCC member witnesses, including Parkinson Society Canada, made reference to NHCC key objectives such as a national brain strategy and the addition of neurological conditions to the Canadian Chronic Disease Surveillance System.

The Standing Committee on Health is expected to table the report on Neurological Diseases, along with reports on Chronic Diseases related to Aging and Canada’s drug shortage, before the House of Commons breaks for its summer recess on June 22, 2012.

World Parkinson Congress 2013

October 1-4, 2013
Montreal, Canada

World Parkinson Congress (WPC) is only 16 months away. Plan to be there. If ever you were going to attend WPC, this is the time to go because it’s happening right here in Canada. You can’t get more accessible than that. Also, Montreal is a fabulous city for a conference with so much to do in its wonderful cosmopolitan atmosphere.

Hundreds of volunteers are already busy at work. There are Canadian reps on most, if not all, of the WPC international committees. The local organizing committee in Montreal is planning many exciting events.

Our WPC ambassadors: Ryan Tripp (Central & Northern Ontario); Yvon Trepanier (Southwest Ontario); and Bob Kuhn (BC) have been spreading the word about the experience of Congress not just in Canada but all over the world. In fact, Bob Kuhn made a round-the-world trip to generate enthusiasm and to meet with as many Parkinson’s organizations as possible on his travels.

The excitement is starting to build. The hotels have been selected. The program will be finalized shortly, with one day devoted to basic science, one day to clinical science and a day to comprehensive care. There will also be a pre-conference policy day for government officials and policy makers.

Come hear the fabulous keynote speakers, get answers from the experts and meet people from around the world who are touched by Parkinson’s.

Visit www.worldpdcongress.org for more details.


Charitable registration number 10809 1786 RR0001
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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