Archive for November, 2012

Message from the editor

Welcome to e-Parkinson Post.

The World Parkinson Congress (WPC) is coming to Montreal in October 2013. To help make this the most successful Congress to date, we list several ways that you can get involved. Canadian WPC Ambassador Ryan Tripp offers additional reasons to attend.

In a Story from the Front, we profile Ontario resident Bill Andrus who shares some of his strategies for living well with Parkinson’s.

We also highlight examples of the excellent work currently undertaken by researchers funded under the Parkinson Society Canada National Research Program.

The advocacy report outlines key findings and recommendations of the federal Health Committee’s final report on neurological conditions.

We ask your help in bringing the issue of genetic discrimination to the attention of your federal MP.

This is our final issue of 2012. We invite you to consider supporting Parkinson Society Canada by making a special year-end donation. Your support will help to fund innovative research, education, advocacy and support services that so many Canadians living with Parkinson’s depend on.

We invite you also to make some additional New Year’s resolutions along with the ones you are sure to make. Put planning to attend the World Parkinson Congress in October 2013 at the top of your list.

Marjie Zacks

Finally, we invite you to leave a note in the Comments section to let us know what you think of the newsletter and articles. Your feedback will make this publication better. And if you enjoy reading e-Parkinson Post, please pass along the link to someone you know so that they may enjoy it too.

Wishing you all the best of the season.

Marjie Zacks

Editor

World Parkinson Congress 2013

World Parkinson Congress 2013October 1-4, 2013
Montreal, Canada

The countdown is on! World Parkinson Congress 2013 is less than a year away and heading into the home stretch. Here are a few ways you can participate.

Send a photo. Submit a photo of yourself holding a See you in Montreal at the WPC 2013 sign for posting on the World Parkinson Congress 2013 website, Facebook page or newsletter.

Enter the video competition. Make a video about your experience with Parkinson’s – living with it, treating it, researching it or caring for people with Parkinson’s. The grand prize will be free registration to attend WPC 2013, two nights’ hotel accommodation during the Congress and showing of the winning video during the Opening Ceremony on October 1, 2013.

Submit an abstract or poster. WPC 2013 is accepting scientific abstracts from health professionals engaged in research and Living with Parkinson’s posters from people in the Parkinson’s community involved in innovative activities and programs.

Register early. Registration opens on January 2, 2013. Congress has four days of plenary and parallel sessions, workshops, poster presentations, networking opportunities and fun events.

Sign up for the Parkinson’s Buddies Program. Once you have registered for Congress, you will be asked if you would like to participate in the Parkinson’s Buddies Program, which matches WPC registrants with Canadians with Parkinson’s disease who have also signed up to attend Congress. If you agree to participate, you will be contacted by the Buddies Program Coordinator.

Sign the Global Parkinson’s Pledge. We invite Canadians to make Parkinson’s a health, research, social and economic priority around the world and help Canada do its part to build a global Parkinson’s movement. Be one in a million. Sign the pledge today.

Visit www.worldpdcongress.org for full details about these and other WPC 2013 activities.

Key dates

  • November 5, 2012 – Video competition opens
  • December 3, 2012 – Abstract Submission opens
  • January 2, 2013 – Registration opens

Meet the WPC 2013 Ambassadors: Ryan Tripp

World Parkinson Congress Ambassador, Ryan Tripp is one of three Canadian WPC Ambassadors.

Ryan Tripp, a former physical education teacher and administrator, was diagnosed with Parkinson’s in 1996, at the age of 47. He is one of the three Canadian Ambassadors for World Parkinson Congress 2013. Ryan lives in Bracebridge, Ontario.

How did you become a WPC 2013 Ambassador?

I attended the first World Parkinson Congress in 2006, in Washington, D.C. and got hooked on what it had to offer. Then I went to the second Congress, in Scotland, in 2010, on a travel grant, in exchange for volunteering to talk about the Congress before, during and after the event.

Within six months of my return, Congress Manager Eli Pollard, offered me the opportunity to become an Ambassador and generate excitement about WPC 2013 in Canada and around the world. Parkinson Society Canada CEO Joyce Gordon agreed that, in view of my Parkinson’s advocacy work here provincially, I might be of some help. I am thrilled and privileged to serve as one of the 12 global WPC 2013 Ambassadors.

How is the World Parkinson Congress different from other Parkinson’s conferences?

World Parkinson Congress is unique in being open to researchers, neurologists, general practitioners, nurses, allied health professionals, people with Parkinson’s and their caregivers. Other conferences are held specifically for neurologists or movement disorder specialists or people with Parkinson’s and caregivers. WPC provides opportunities for everyone associated with Parkinson’s to come together.

What’s new on the agenda?

For the first time, WPC is inviting health ministers, policy makers and government officials to attend a special pre-conference policy day where these delegates will talk about what is happening with Parkinson’s in their countries and describe available programs, opportunities and funding.

In another first for WPC, some sessions will be offered in French.

How do you promote WPC 2013 to people with Parkinson’s?

I describe WPC 2013 as a four-day investment in ourselves. As people with Parkinson’s, we need to sit at the table, make our voices heard and share in the decision-making. We have an opportunity to interact with the brightest and best minds in science and neurology. Montreal is a tremendous location, in terms of its diversity in the global market.

Why are you such a passionate advocate for Parkinson’s?

After my diagnosis, I felt that my life had shattered. I experienced depression, withdrawal and had difficulty doing my work. I ended up with a fractured marriage. After two years of this, with some help, I took hold of myself and began commuting once a month to attend a support group. There, I met other people with Young-Onset Parkinson’s and found I could relate to them. We forged relationships that proved valuable and important to me. This fostered my desire to be an advocate provincially, nationally, and now globally, as the Parkinson Society Canada’s mission says, to ease the burden of Parkinson’s and find a cure. I’m prepared to do as much as I can for the cause.

You talk to children about Parkinson’s. Why is that important?

With my background as a physical education teacher and education administrator, I have a particular interest in talking to children in elementary and secondary schools. I gear it to their age. I start by asking, “Has anybody heard the word, Parkinson’s?” Usually one or two have heard of it. I might ask, “Have you ever seen someone shaking?” I get the students to come up with their own questions to open up the discussion.

I think that, in any society, knowledge about major diseases is important. Children need to know that, although some medical conditions may be more serious than others, each has a tremendous effect on the person living with it. Talking about Parkinson’s can help children develop not only a knowledge base about Parkinson’s but also empathy for people living with it.

Is there anything you’d like to add about WPC 2013?

I’d like to remind everyone that registration starts in January 2013 and various key deadlines are approaching, so I encourage you to get involved and come to Montreal for the WPC 2013.

Living well with Parkinson’s: Bill Andrus

Bill Andrus (middle) and his wife Margaret, with their children and grandchildren.

When Bill Andrus was diagnosed with Parkinson’s seven years ago, at age 51, his first reaction was relief. “If we know what it is, at least we can treat it.”

That relief was quickly replaced by anger and fear of the unknown. “Now, I knew I had Parkinson’s but what did it mean? How long did I have? How would Parkinson’s impact my life, my career and my plans?” As a project manager in the financial services industry, Bill says, “I was all about planning and goals but Parkinson’s makes you second-guess and re-evaluate everything.”

Within 18 months of the diagnosis, Bill took medical leave. “The job required a high level of energy, multi-tasking and concentration, but Parkinson’s made all of this difficult,” says Bill. “I was worried about finances and my future. I didn’t know anyone else with Parkinson’s, so it felt as if I was on my own.”

But not for long. Bill’s neurologist and staff at the Centre for Movement Disorders in Markham, Ontario put him in touch with his regional Parkinson Society. Bill says, “It was the best thing they could have done because, within days, I was in contact with them. Sandie Jones, Coordinator of Client Services and Education at Parkinson Society Central & Northern Ontario spent time with me on the phone. She sent me a wealth of information, including brochures on everything from what Parkinson’s is to how to treat individual symptoms. I couldn’t have asked for more.”

Bill decided to join his local Parkinson’s support group. Any initial fears about attending were dispelled by the friendliness of the people he met. “It’s been a big help for me to interact with people who have had Parkinson’s for 10, 15, 20 years,” says Bill. “Looking at them and seeing what they have accomplished since their diagnosis gives me a lot of inspiration.”

As current leader of the group, Bill finds, “One of the best things about being in a support group is having the freedom to acknowledge what you are feeling and to ask questions that you wouldn’t ask in another group of friends.”

To manage his symptoms and live as fully as possible, Bill relies on three cornerstones: medication – the dosage has increased over the years; exercise – a 30-minute daily walk and regular yoga; and rest – fatigue and sleep problems are his most troublesome symptoms, so he will rest in the afternoon after a difficult night.

The sleepless nights have yielded an unexpected bonus, in unleashing Bill’s creative side. He started writing poetry one night when he couldn’t sleep; now it’s a regular activity. He says, “It’s a different way of expressing my thoughts. It also helps me reduce stress.”

An avid fundraiser, Bill walks with about 20 family members and friends in Parkinson SuperWalk each year. For him, “Fundraising is about raising awareness. If somebody cares enough to make a donation, then that’s one more person who knows about Parkinson’s.”

Bill’s message to people with Parkinson’s is: “Keep active, keep positive and keep a good circle of friends around you.”

*************

Parkinson’s

By Bill Andrus

51 years old and I have Parkinson’s Disease!
The Doctors told me so. They are the experts.
What do I feel? How am I supposed to feel?
Relief, I actually feel relief, for a while.

Doctors, tests, medications, therapy and more
Over the last years, three or four.
Finally a label, a diagnosis, a reason.
It’s not MS, ALS, Huntington’s or a Brain tumor.
I have Parkinson’s, the doctors say!

Finally a reason my writing is illegible and small,
And my arm does not swing au naturel.
Understanding now, that little annoying tremor,
And why, when during a walk, I may stumble.
Tiredness, fatigue, small tasks require big efforts.
It’s OK, I have Parkinson’s Disease.

Relief is a very quick emotion, soon over.
Denial, disbelief fills the void. How can they be sure?
Doctors, only human, make mistakes.
Parkinson’s is treatable, they say, good drugs and exercise.
But what I have, must be Curable and soon.
Most likely a pinched nerve, I believe.
I am only 51, how can I have Parkinson’s disease?

Frustration, anger, confusion. This was not in my life’s plan.
Levodopa, carbidopa, mirapex, clonazapam and more
Drugs, I don’t want to understand and certainly should not need.
Exercise, stretch, walk, eliminate stress, get your rest, they say.
My career? I choose an early leave, Focusing now on staying well
For me, my family and our friends.
I have Parkinson’s disease, like it or not!

No longer 51, I accept what I cannot change.
My life’s plan now a continuous curve,
around the corner, I cannot see.
Each day, new challenges, full of surprises.
On questions of why and what ifs, I don’t dwell.
I am where I am and it is what it is.
I have Parkinson’s disease and it will be OK.

Doctors, nurses, health workers and support groups help,
Prescribing, teaching and sharing their wisdom.
Drugs, therapy, exercise, knowledge and caring.
I accept, learn and work with each one,
Building strength, confidence and courage to go on.
I have Parkinson’s disease, but it’s not all bad.

Through talking, laughter and being with others,
Sharing tears of joy and frustration, the journey continues.
Supported by family, friends and other Parkinsonians,
Learning from their stories and sharing mine,
I move forward one hesitant step at a time.
I feel lucky and a little relieved.
I have Parkinson‘s disease and I know what it is!

To see more examples of the creativity of people with Parkinson’s, visit Creative Expressions.
If you would like us to feature your journey with Parkinson’s, please email editor@parkinson.ca.

Parkinson Society Canada National Research Program

Your research dollars at work

Parkinson Society Canada has funded more than 400 awards, fellowships, and grants, since 1981. The resulting research is teaching us more about how to prevent, diagnose and treat Parkinson’s disease.

Studying how pesticide exposure affects the development of Parkinson’s disease

Dr. Scott Ryan

Dr. Scott Ryan
Post-doctoral Fellow
Sanford-Burnham Medical Research Institute

At Sanford-Burnham Medical Research Institute, Post-doctoral Fellow Dr. Scott Ryan investigates the relationship between genetic mutations and pesticide exposure in Parkinson’s disease. Using florescent microscopy techniques, Dr. Ryan will study the effects of pesticides on mitochondria, the parts of a cell responsible for producing energy.

“We hope to learn more about what exactly goes wrong in cells following exposure to pesticides and how it can affect the development of diseases, such as Parkinson’s.”

Investigating bowel biopsy as a diagnostic test for Parkinson’s disease

Dr. Anthony Lang

Dr. Anthony Lang
Director, Division of Neurology, University of Toronto
Director, Movement Disorders Clinic, Toronto Western Hospital

Dr. Anthony Lang is investigating if a bowel biopsy from a colonoscopy is an effective diagnostic tool for Parkinson’s disease. If he finds it is, he will explore the effectiveness of bowel biopsies from rigid sigmoidoscopy. Unlike a colonoscopy, this procedure can be performed in any clinic room and patients don’t need to take laxatives. This could result in a widely available screening method for Parkinson’s disease and perhaps a way of monitoring the impact of disease modifying therapies.

“The hope is that we’ll have a way to diagnose the disease at a very early stage. In the future, this could help us implement disease modifying therapies when they are going to be most effective and also measure the effects of those therapies.”

Learning more about why people with Parkinson’s often develop uncontrolled movements

Dr. Andre Felicio

Dr. Andre Felicio
Post-doctoral Fellow
Pacific Parkinson’s Research Centre, University of British Columbia

Many people with Parkinson’s disease develop dyskinesia, uncontrolled movements that can be a side effect of dopamine-replacement therapy. But dopamine may not be the only chemical involved. Using brain imaging, University of British Columbia neurologist Dr. Andre Felicio investigates whether the chemical serotonin also plays a role in this debilitating side effect.

“Currently, therapies for dyskinesia focus only on dopamine dysfunction. We’re studying whether another chemical in the brain, serotonin, is involved. Learning more about the causes of dyskinesia is important in order to develop more effective therapies.”

For more information about Parkinson Society Canada’s National Research Program and currently-funded research, see:

Newly-funded researchers honoured at celebratory events

Thanks to generous donors and supporters, and with funds raised from the annual nation-wide Parkinson SuperWalk, a total of  $1,713,208 has recently been awarded to 33 researchers.

See photographs of the events held to honour the researchers and present them with their awards.

October 18, 2012Parkinson Society British Columbia

October 23, 2012Parkinson Society Ottawa

November 6, 2012Parkinson Society Quebec

November 7, 2012Parkinson Society Southwestern Ontario

November 14, 2012Parkinson Society Saskatchewan

November 27, 2012Parkinson Society Central & Northern Ontario

Advocacy Update

Joyce Barretto

By Joyce Barretto and Yvon Trepanier, Co-Chairs, National Advocacy Committee

Federal Health Committee Tables Report On Neurological Conditions

The Federal Standing Committee on Health tabled its report, Focusing on the Brain: an Examination of Neurological Diseases in Canada, to Parliament, in June 2012. This marked the culmination of the Health Committee’s study which began in 2009.

Yvon Trepanier

Key areas the report focused on included:

  • the size and scope of neurological conditions and their impact on Canada’s health care system;
  • the need to promote neurological research and surveillance;
  • the importance of improving the quality of life of people living with neurological conditions, in areas such as income security;
  • support for caregivers;
  • access to treatment and therapies;
  • the need for genetic privacy legislation at both the provincial and federal levels.

The Committee’s recommendations included several that Parkinson Society Canada and Neurological Health Charities Canada had advocated; for example, that:

  • The Government of Canada consider using the results of the National Population Health Study on Neurological Diseases, in collaboration with the provinces and territories, as the basis of a pan-Canadian strategy for neurological diseases.
  • The Public Health Agency of Canada include neurological conditions within its Canadian Chronic Disease Surveillance System.
  • The Government of Canada continue to promote brain disease research and consider including multidisciplinary research that investigates the commonalities underlying brain diseases.
  • The Canadian Institutes of Health Research consider developing more strategic initiatives related to neurological research.
  • The Government of Canada consider establishing a Centre of Excellence for Neurodegenerative conditions, through its Networks of Centres of Excellence Program.
  • The Public Health Agency of Canada continue to explore programs to inform Canadians about neurological diseases.
  • The Government of Canada examine existing federal legislation, including the Privacy Act and the Personal Information Protection and Electronic Documents Act, to determine whether it provides sufficient protection regarding the privacy of health information, including the results of genetic testing.

These recommendations are a monumental win for the Parkinson’s community, as they send a powerful message to all parliamentarians about the need for better support for people living with neurological conditions and increased funding for neuroscience. They also provide a solid grounding for the advocacy efforts of both Parkinson Society Canada and Neurological Health Charities Canada, as we move forward.

You can view the full report at Focusing on the Brain: an Examination of Neurological Diseases in Canada.

Genetic Discrimination: We need your help

Parkinson Society Canada is a member of the Canadian Coalition for Genetic Fairness. The Coalition is advocating that the government of Canada develop a strategy to protect Canadians against discrimination. We need your help in bringing awareness of this issue to our elected representatives.

On October 1, 2012, Private Member’s Bill C-445 was tabled in the House of Commons. The Bill, introduced by NDP MP Libby Davies (East Vancouver), calls for an amendment to the Canadian Human Rights Act to add genetic characteristics as prohibited grounds of discrimination.

We are asking you, the Parkinson’s community, to write your Members of Parliament to bring this important issue to their attention so they will support the Bill when it is debated in the House of Commons. You can use this sample letter or tailor it to your personal experience.

Let us know at general.info@parkinson.ca, if you decide to write a letter or if you obtain support from your MP.

To read the full text of the bill, see Bill C-445: An Act to amend the Canadian Human Rights Act (genetic characteristics).

For more information about genetic discrimination, see Ask the Expert – Genetic discrimination: Beware.


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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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