Archive for the 'April 2010' Category

Message from the editor

Welcome to the first edition of e-ParkinsonPost for 2010.

This year, Parkinson Society Canada celebrates 45 years of supporting and serving Canadians with Parkinson’s. We have a proud tradition of providing information and support to enable a better life and a brighter future for people with Parkinson’s disease. We thought that over the next several issues, we would revisit the Parkinson’s journey from its earliest signs and diagnosis to living with Parkinson’s to end-of-life considerations.

This issue kicks off with a look at the expanding knowledge about non-motor symptoms in Parkinson’s disease – what we are learning about how these symptoms develop and how they are currently treated or managed. We highlight some new Canadian research targeting Parkinson’s from a variety of angles and offer brief tips for coping with a diagnosis.

April is Parkinson’s Awareness Month, so I invite you to visit our web site to view our calendar of Awareness Month events in communities across Canada, read Stories from the Front, and to test your Parkinson’s IQ.

Online registration is now open for Parkinson SuperWalk 2010.

Comments, questions and story ideas are always welcome. You can send them to editor@parkinson.ca

We hope you enjoy this issue.

Marjie Zacks
Editor

Parkinson’s much more than a movement disorder

Parkinson’s disease is usually considered to be a movement disorder characterized by tremor, rigidity, slow movement or poor balance. Yet when many people with Parkinson’s look back they can point to early changes in areas unrelated to movement, such as, loss of smell, lack of motivation, tiredness, and slower responses when answering questions. A visitor to the Parkinson Society Canada web site, http://www.parkinson.ca, who experienced these kinds of changes before the diagnosis recently asked: “Why isn’t there more information out there for doctors and the general public about the subtle signs of Parkinson’s so they can be monitored and diagnosed earlier?”

Dr. Mandar Jog, director of the Movement Disorders Program at the London Health Sciences Centre

Dr. Mandar Jog, director of the Movement Disorders Program at the London Health Sciences Centre

Dr. Ranjit Ranawaya, director of clinical services for the Movement Disorders Clinic at the University of Calgary

Dr. Ranjit Ranawaya, director of clinical services for the Movement Disorders Clinic at the University of Calgary

e-ParkinsonPost raised this issue of non-motor symptoms with Dr. Mandar Jog, director of the Movement Disorders Program at the London Health Sciences Centre and Dr. Ranjit Ranawaya, director of clinical services for the Movement Disorders Clinic at the University of Calgary. Here is some of what they had to say:

The clinical diagnosis of Parkinson’s disease relies on motor symptoms.

Dr. Jog: “You need to have two out of the three cardinal symptoms plus response to levodopa. Those are the clinical criteria. You cannot say somebody has Parkinson’s disease because they have constipation, depression, loss of smell or restless leg syndrome. So, if you have a diagnosis of Parkinson’s and you have some of those other things, then those are the non-motor symptoms of Parkinson’s.”

There is currently no way to tell which people, with non-motor problems, will go on to develop Parkinson’s disease.

Dr. Jog: “If you have constipation, loss of smell, a family history of Parkinson’s, exposure to well water, if the stars are aligned this way, it may be that you have higher risk of developing Parkinson’s but we don’t go out and screen for those things at this time.”

Dr. Ranawaya: “The problem is, if I see a patient with depression or anxiety, how do I know they might get Parkinson’s? At present, we don’t have any drug that will slow down the disease process, stop it in its tracks or stop someone from getting it. However, if we find a compound which does slow down Parkinson’s or stop it, then we would want to identify those individuals who are at risk, possibly by doing smell testing on them. But for now, let’s assume I do a smell test on someone and I realize they could be at risk of Parkinson’s, there’s not much I can do. There really needs to be good evidence that if you start treating a person with medication it’s going to make a big difference in the long run.”

Many people experience non-motor problems after they have been diagnosed with Parkinson’s.

Dr. Jog: “Having other associated physical symptoms is not unique to Parkinson’s disease.”

Dr. Ranawaya: “In terms of non-motor symptoms, they occur the majority of time after the diagnosis has been made, apart from some people with REM behaviour sleep disorder and a percentage of people with depression or anxiety. The non-motor symptoms accompany the patient with Parkinson’s as the disease progresses.”

Researchers are discovering that REM sleep behaviour disorder, depression /anxiety and changes in smell are among the non-motor problems that most commonly precede motor symptoms in Parkinson’s.

Dr. Ranawaya: “Studies by neuropathologist Heiko Braak show that Lewy bodies, a pathological marker for Parkinson’s disease, don’t start in the substantia nigra where dopamine is produced, but they start in the brain stem further down, probably in the autonomic area and in the olfactory bulb which deals with smell.” (The autonomic nervous system controls involuntary body functions.) “Then they ascend to affect the brain stem where we have the sleep/wake cycle. So many patients develop REM sleep behaviour disorder where they act out their dreams. Then they become Parkinsonian; they develop the motor signs. When the Lewy bodies go further up into the brain, they start affecting the mesolimbic system and the cortex, so that by the time a person develops Parkinson’s, they have probably had it for a long time. For the medical profession, it’s only now we’re recognizing that this is not just dopamine, that there are all these other neurotransmitters that are affected.”

Dr. Jog: “Some people, including myself, feel that some of these non-motor symptoms are actually symptoms of Parkinson’s. It just happens to have affected other systems earlier on, which makes Parkinson’s not simply a substantia nigra and dopamine disease but a multi-system disease where multiple areas of the body physiologically are involved.”

Armed with this new knowledge, many clinicians are paying closer attention to the non-motor symptoms of Parkinson’s and seeking ways to assist patients with their treatment and management.

Dr. Jog: “In the last little while we’ve realized that we need to treat patients more holistically and that symptoms such as swallowing problems, constipation, mild cognitive impairment, even depression, apathy and anxiety are equally important and they do have an impact on the general well-being of patients.”

Dr. Ranawaya: “In surveys of patients, we have found that they are more disabled from their non-motor symptoms than their motor symptoms and that these things contribute more to quality of life and are more important to patients. We don’t have remedies for many of the non-motor symptoms so this is becoming quite a conundrum.”

***

Practice Parameter: Treatment of nonmotor symptoms of Parkinson disease: Report of the Quality Standards Subcommittee of the American Academy of Neurology
Neurology 2010;74:924-31.

***

Parkinson Society Canada has a checklist to help you monitor changes in your Parkinson’s symptoms.  Use the checklist to discuss changes with your health care professional.

New in Parkinson’s research

Reducing brain inflammation in Parkinson’s

Dr. Shawn Hayley, associate professor at the Institute of Neuroscience, Carleton University and Canada Research Chair in Neuroscience, is studying an immune system protein in the brain that can reduce inflammation and promote cellular growth. The protein, GM-CSF (granulocyte macrophage colony stimulating factor), may be able to protect dopamine-producing brain cells in people who have been newly diagnosed with Parkinson’s disease. Researchers believe inflammation in the brain – possibly caused by exposure to pesticides or other environmental toxins – may be killing those dopamine neurons.

Gum chewing to improve swallowing function

Dr. Mandar Jog, director of the Movement Centre at London Health Sciences Centre, is looking at objective measures of swallowing improvement in people with Parkinson’s in a residential care setting. In an initial study of 20 people with Parkinson’s, Dr. Jog, along with speech language pathologists Angie South and Stephanie Somers, found that chewing gum significantly improved swallow frequency and latency in patients with Parkinson’s disease in a hospital setting. Dr. Jog’s hope is that people with Parkinson’s can be retrained to swallow with sustained improvement. This could mean a simple, cost-effective solution for people living with Parkinson’s.

Dr. Mandar Jog with Speech langauge pathologists Angie South (middle) and Stephanie Somers (left)

Dr. Mandar Jog with Speech langauge pathologists Angie South (middle) and Stephanie Somers (left)

Measuring iron levels in the brain for possible new diagnostic tool for Parkinson’s

People with Parkinson’s disease have higher levels of iron in the brain. At the University of British Columbia, Dr. Alexander Rauscher, a research associate and expert in an imaging technique called Susceptibility Weighted Imaging (SWI) is working with Dr. Martin McKeown, an associate professor of medicine, to develop a better version of SWI which is very sensitive to iron and which results in better, sharper images than can be obtained with conventional brain scans. Rauscher and McKeown’s goal is to establish an imaging biomarker for Parkinson’s. This would mean an earlier diagnosis and improved treatment monitoring of Parkinson’s.

Dr. Alexander Rauscher is a Research Associate at the University of British Columbia MRI Research Centre

Dr. Alexander Rauscher is a Research Associate at the University of British Columbia MRI Research Centre

Investigating shape changes in brain structures for clues to Parkinson’s diagnosis and treatment.

Dr. McKeown is also using newly-developed MRI techniques for assessing shape to determine if parts of the brain change shape after development of Parkinson’s disease and to determine if the shape changes correlate to specific aspects of the disease. Most studies in the past have investigated changes in brain volume. It is more subtle to look at changes in brain shape. This work could have implications for Parkinson’s diagnosis and treatment.

Dr. Martin McKeown is Associate Professor of Neurology at the University of British Columbia, Pacific Parkinson's Research Centre

Dr. Martin McKeown is Associate Professor of Neurology at the University of British Columbia, Pacific Parkinson's Research Centre

Listener impressions of people with Parkinson’s disease (PDF)

Research conducted by Dr. Marc Pell, associate professor at McGill University’s School of Communication Sciences and Disorders, in collaboration with Abhishek Jaywant, a research trainee in McGill’s Neuropragmatics and Emotion Lab, has found that people with Parkinson’s disease suffer social difficulties simply because of the way they talk.

The Donald Calne Lecture

Parkinson Society Canada and Parkinson Society Ottawa host The Donald Calne Lecture on Sunday, May 16th in Ottawa, Canada.

Dr. Andres LozanoThis year’s presenter is Dr. Andres Lozano, distinguished Neuroscientist and Tier 1 Canada Research Chair in Neuroscience.  Dr. Lozano is currently Professor and RR Tasker Chair in Functional Neurosurgery, University of Toronto, Toronto, Canada. His research is focused on developing novel surgical treatments for neurological and psychiatric disorders particularly for Parkinson’s disease and depression. Dr. Lozano’s work has appeared in over 300 peer reviewed publications and he is highly cited ranking in the top 5 in the world in the fields of both Deep Brain Stimulation and Parkinson’s disease.

Dr. Lozano will speak about advances in the treatment of Parkinson’s in surgery and prospects for the future.

Proud sponsor of the Donald Calne Lecture:

For information, contact Marjie Zacks at 1.800.565.3000, ext. 3380 or Hilary Evans at 613-722-9238 or email hievans@toh.on.ca

After the diagnosis

You are in charge of your own health. But if, and when, you need advice about Parkinson’s, there are many resources available in your community and people willing to help. Your local Parkinson organization is an integral part of your support.

Educate yourself. Learn all you can about Parkinson’s. Seek information from reputable sources. Start with Parkinson Society Canada for up-to-date, reliable information and resources and links to the Parkinson Society in your community. Call our national toll-free Information and Referral Centre at 1-800-565-3000. Visit our web site at www.parkinson.ca or send and e-mail to general.info@parkinson.ca.

Share the diagnosis. Discuss your diagnosis and share information about Parkinson’s with your family and, as time passes, with friends you can trust. Proceed at your own pace. Recognize that you may experience a variety of emotions: anger, denial, frustration, fear, confusion, disbelief and sadness. Do not isolate yourself. Share your feelings.

Consider joining a support group. Support groups offer a safe environment where you can gain emotional support, learn practical coping skills and strategies and find out about resources from people who understand. Look for a support group that suits your style and addresses your needs. Through our 12 regional partners, Parkinson Society Canada has over 235 chapters and support groups across Canada. This includes groups for newly-diagnosed, Young-Onset Parkinson’s and care partners, traditional in-person support, telephone support and online.

Consider Joining a Support Group

Consider joining a support group

For example, Parkinson Society Central & Northern Ontario has a Young-Onset Parkinson’s chat support group that meets at 1:30 p.m. on the fourth Monday of each month. The chat room provides anonymity – no voice, no face, no picture – which is often a major concern for younger people with Parkinson’s, says group facilitator Jon Collins. “It allows people to come to terms with having Parkinson’s and get the support they need even if they are uncomfortable.” Since the group’s first meeting in October 2009, discussion has typically centred on work and family issues.

Seek one-on-one support if you are not interested in participating in a group. Your local Parkinson Society may be able to assist you in finding peer support or counselling resources in your community.

For more strategies for dealing with the diagnosis, see Taking Control: 10 steps to help you cope with a recent diagnosis of Parkinson’s (PDF).

We help families

general.info@parkinson.ca

A recent e-mail we received began: “My Dad has Parkinson’s. My Mom needs help….” It was signed, A daughter in distress.

After asking some questions, making a few suggestions and enclosing some information sheets, we heard back from her: “Thank you so much for your info and speedy reply.  I don’t feel quite as alone as I did yesterday. Thank you again.” Signed, A little less distressed!

Parkinson’s advocacy action ramps up: we need your help

Beginning in April 2010, Parkinson Society Canada is increasing communication to federal policy makers on seven key areas of interest for Canadians with Parkinson’s:

  • research – the pressing need for accelerated and targeted investment in Parkinson-specific research and neuroscience research;
  • prevention – the need to learn more about how to prevent Parkinson’s and, in the meantime, how to slow progression and prevent complications;
  • caregiver support – the need to support the valuable role played by family caregivers;
  • income security – the need to ensure that people disabled by Parkinson’s disease are protected from poverty;
  • integrated care and support – the need to better coordinate care;
  • genetic privacy – the need to protect people with Parkinson’s disease and their families from genetic discrimination; and
  • public awareness and education – the need to build a better understanding of the Parkinson’s experience and brain health overall, in the Canadian public and among front-line health professionals.

Parkinson Society Canada is asking the Government of Canada to invest in the development of a National Brain Strategy.

We need your help to bring the Government of Canada’s attention to the needs of Canadians with Parkinson’s and other brain conditions.  Send a letter to your Member of Parliament and Senators, as well as key decision makers including Prime Minister Stephen Harper, the Minister of Health, Minister of Finance, Minister of State for Seniors, and Minister of Human Resources and Social Development.

To find contact information for your Member of Parliament or Senators, visit http://canada.gc.ca/directories-repertoires/direct-eng.html#mp.

To send a letter to Prime Minister Stephen Harper and his key Ministers, please use the following contact information:

The Right Honourable Stephen Harper, P.C., MP
Prime Minister of Canada
Office of the Prime Minister
80 Wellington Street
Ottawa, ON
K1A 0A2
E-mail:  pm@pm.gc.ca

The Honourable James M. Flaherty, P.C., MP
Minister of Finance
Department of Finance Canada
140 O’Connor Street
Ottawa, Ontario K1A 0G5
E-mail:  jflaherty@fin.gc.ca

The Honourable Leona Aglukkaq, P.C., MP
Minister of Health
Health Canada
Brooke Claxton Building, Tunney’s Pasture
Postal Locator: 0906C
Ottawa, Ontario K1A 0K9
E-mail: Minister_Ministre@hc-sc.gc.ca

The Honourable Diane Finley, P.C., MP
Minister of Human Resources and Social Development
House of Commons
Ottawa, ON K1A OA6

The Honourable Diane Ablonczy, P.C., MP
Minister of State (Seniors)
House of Commons
Ottawa, ON  K1A 0A6

Celebrating 45 years of accomplishments

2010  marks Parkinson Society Canada’s 45th year of supporting Canadians with Parkinson’s. Take a look at some of the milestones we achieved as the organization evolved.

Supporting Canadians with Parkinson's since 1965

1965
Canadian Parkinson’s Disease Association / Association Canadienne du Parkinson is incorporated with a mandate of research, education and services. Directors attending the first meeting include the mayor of Toronto, Charles Mortimer Q.C., Dr. Ronald Tasker and Dr. André Barbeau, the internationally recognized neurologist who initiated research, in 1960, that demonstrated Parkinson’s resulted from a dopamine deficit.

1966
Grassroots groups form in Victoria, Vancouver, Winnipeg, Toronto and Montreal.

1969
B.C. Parkinson’s Disease Association is incorporated, sharing a board of directors with the Vancouver Neurological Centre until 1984.  (It becomes the Parkinson Society British Columbia, September 14, 2002.)

1971
The organization is renamed The Parkinson Foundation of Canada / La Fondation Parkinson du Canada.

1972
The Saskatchewan Parkinson’s Disease Foundation registers as a charity.

1973
The Parkinson’s Society of Alberta is incorporated.

1977
The first chapter is organized in Manitoba.

1979
The Parkinson’s Disease Society of Ottawa-Carleton (Ontario) is incorporated. (It becomes Parkinson Society Ottawa in 2002.)

1980
Volunteers form and run the London, Ontario Parkinson’s Support group.

1981
The National Research Program is launched with the creation of the organization’s first Scientific Advisory Board.

Parkinson Foundation of Canada awards its first research grant, $150,000, to Dr. Clement Young of Toronto Western Hospital/University of Toronto.

1983
Parkinson’s Disease Society of Nova Scotia is established. (It becomes Parkinson Society Canada – Maritime Region in 1999.)

1984
At the launch of the first Parkinson Awareness Week in Canada, Honorary Chairman Murray Koffler salutes the Foundation and urges people with Parkinson’s to “tell it like it is.”

Dr. James Parkinson tulip bulbs are available for the first time in Canada in the Ottawa area. 10,000 bulbs are sold.

1985
Dr. André Barbeau merges the Quebec Parkinson Chapter with the Parkinson Foundation of Canada and pleads for volunteer solidarity.

1986
Victoria Epilepsy and Parkinson’s Centre (British Columbia) incorporates.

1987
A Newfoundland and Labrador support group is established.

1988
The first annual sale of James Parkinson tulip bulbs across Canada results in the sale of close to 20,000 bulbs.

1989
The Parkinson Society of Fredericton (New Brunswick) receives its charter.

The Saint John (New Brunswick) Chapter co-hosts Parkinson Foundation of Canada’s Annual General Meeting and Conference in Saint John, establishing a model for the Foundation’s travelling AGM and conference.

1990
Seven members of the Toronto (Ontario) Chapter hold the first SuperWalk.

The first annual Blue Jays Pitch In for Parkinson’s baseball game takes place. Pitcher John Cerutti tapes a 30-second public service announcement.

1993
One of the first Parkinson Foundation of Canada fellowships is awarded to Dr. Pierre Blanchet.

1994
Sales of James Parkinson tulip bulbs across Canada reach 100,000 (up from 20,000 in 1988).

Dr. A. Jon Stoessel receives a two-year operating grant to study “Mechanisms underlying complications of dopaminergic therapy in PD.”

1996
Parkinson Foundation of Canada supports the development and validation of the first North American rating scale to measure quality of life in Parkinson’s.

2000
SuperWalk for Parkinson’s celebrates its 10th Anniversary with 38 walks across Canada, raising $641,191.

2001
The organization is renamed Parkinson Society Canada/Société Parkinson Canada. A new logo is introduced and the mission statement is revised.

A National Agreement among Canadian Parkinson’s organizations is signed by every Canadian organization representing Canadians living with Parkinson’s.

The National Information and Referral Centre opens.

2002
The Donald Calne Lectureship is created to provide Canada’s Parkinson and medical communities with access to some of the world’s foremost experts on Parkinson’s.

In two years, SuperWalk doubles its revenue to $1,266,574.

2003
Parkinson Society Canada works with Health Canada to produce a report, Parkinson’s Disease: Social and Economic Impact, which for the first time reveals economic statistics about Parkinson’s.

2004
Parkinson Society Canada hosts the 8th International World Parkinson Day, bringing together all the stakeholder groups in the Parkinson’s community.

At the annual conference of the College of Family Physicians, Parkinson Society Canada provides family physicians with the newly-developed Family Physician Information and Resource Kit.

SuperWalk reaches new heights – 74 walks raising almost $1.7 million.

2005
Parkinson Society Canada celebrates its 40th anniversary

2006
Over 70 Canadian delegates attend the first World Parkinson Congress in Washington, D.C.

Parkinson Report appears in the Globe and Mail.

2007
Parkinson Society Canada launches the new website to coincide with Parkinson Awareness Month in April.

SuperWalk breaks the $2.1 million mark, with over 12,000 walkers participating in 80 walks across Canada.

Parkinson Society Canada’s National Research Program invests $1.1 million in Parkinson’s research.

Parkinson Society Canada helps launch the Parkinson’s Research Alliance, a group of 50 of Canada’s leading researchers and clinicians and Parkinson Society Canada, who share ways to collaborate, promote and advocate for excellence in clinical care and research in Parkinson’s disease.

2008
Parkinson Society Canada launches its new National Ad campaign, “Nothing’s easy when your body turns against you.” The campaign was developed by the renowned creative agency, TAXI 2.

Parkinson Society Canada is instrumental in getting the Neurological Health Charities Coalition off the ground.

2009
The federal government announces $15 million in research funding for the first-ever national study on the prevalence and impact of neurological diseases in Canada.

SuperWalk for Parkinson’s raises more than $2.3 million with over 13,000 walkers in 87 locations across Canada.

2010
Parkinson Society Canada celebrates 45 years of service.

On its 20th anniversary, Superwalk gets a new name, Parkinson SuperWalk.

NEW – Test Your Parkinson’s IQ

Just in time for April, Parkinson’s Awareness Month, this handy little info card tests your knowledge of Parkinson’s.

Test Your Parkinson's IQ Info Card

PDF

Parkinson SuperWalk – new name, new look

Parkinson SuperWalkParkinson Society Canada’s largest national fundraising event launches on April 7, 2010 with a new name, Parkinson SuperWalk. The new Parkinson SuperWalk is poised to break the $3 million mark this year! Who would have thought that a little fundraiser begun 20 years ago by seven people in one city would grow into a nationwide event attracting 13,000 participants in 87 walk sites across Canada in 2009?

This year’s event takes place on the weekends of September 11-12 and September 18-19 in more than 85 communities across Canada. Join in the excitement as Canadians unite to bring us one step closer to a cure for Parkinson’s.

Register now to enter the draw for Early Bird prizes!

• Raise $100 online, by April 30, for a chance to win a $500 Roots gift card
• Raise $250 online, by May 31, for a chance to win a 46” Sharp AQUOS LCD TV

Visit us at www.parkinsonsuperwalk.ca and get ready for another great year!

Note: Winners will be announced on the Parkinson SuperWalk website. Contest is not open to employees of Parkinson Society Canada and its regional partners or to any members of their immediate families.

FacebookBlogTwitter


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.

Twitter Updates


Follow

Get every new post delivered to your Inbox.

Join 40 other followers