Archive for September, 2012

Welcome to the fall edition of e-Parkinson Post

In this issue, we celebrate people who are doing extraordinary things individually and collectively to make a difference in the lives of people with Parkinson’s:

  • Bob Kuhn, one of our Canadian Ambassadors to World Parkinson Congress 2013, who embarked on a round the world trip in May, to promote the Congress and to learn how people deal with Parkinson’s in other countries;
  • University student Cory Welsh who set out in June to ride across Canada on his Parkinson’s Cycle of Hope, with the goals of engaging more people in conversations about Parkinson’s and raising $50,000 for Parkinson’s research;
  • Isabel Ward, a long-time Parkinson Society Southwestern Ontario volunteer who received this year’s National Volunteer Award for her dedication, commitment and leadership in the fight against Parkinson’s;
  • The thousands of participants – walkers, volunteers and donors – coast to coast who joined forces in the annual Parkinson SuperWalk earlier this month, raising $3.0 million;
  • The newly-funded Parkinson Society Canada researchers whose progress in the scientific realm is contributing to advanced knowledge, improved treatments and a better quality of life for people living with Parkinson’s.

These everyday heroes have done much to get our nation moving, mobilizing others to seek answers, to do more, to contribute more, to challenge assumptions and to create more awareness. We invite everyone to get moving, to be inspired by these stories.

As always, your comments are welcome. Feel free to leave a comment. 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

Coast to Coast Support for Parkinson SuperWalk

From Vancouver to St. John’s, thousands of Canadians showed their support for the 22nd annual Parkinson SuperWalk, the largest fundraiser for Canadians living with Parkinson’s disease. More than 14,000 walkers, volunteers, donors and sponsors helped raise $3.0 million in 95 communities across Canada.

You’re never too young to be a SuperWalk champion. “As soon as I heard about Parkinson SuperWalk, I knew I had to get involved,” 11-year-old Jenna Sigurdson said.

Jenna’s father Blair was diagnosed with Young Onset Parkinson’s disease earlier this year.  Managing Parkinson’s takes more than a team of medical specialists. Blair benefits greatly from the information resources, exercise program and friendships he has gained from his regional Parkinson Society, where he co-founded a Young Onset Parkinson’s support group.

Daughter Jenna’s original fundraising goal was $1,000, but she increased it when donations continued pouring in from generous friends and neighbours. By SuperWalk weekend, Jenna had raised more than $11,500.

“When I participate in Parkinson SuperWalk I feel like I am doing something good, helping others and I feel like I’m making my dad proud of me,” Jenna said. “Not only do I want to raise money to help find a cure for my dad, but I also want other people with Parkinson’s to have the same kind of support he has.”

At Parkinson SuperWalk, Jenna proudly walked alongside her father Blair. Also there to cheer on The Young Onsets team, Jenna’s mother Karren, brother Tyler and dog Ruby.

The Sigurdsons were one of many families at this year’s SuperWalk with a canine companion. This year saw the launch of the Pets for Parkinson’s contest. The contest challenged Canadians to show support for the walk by submitting photos of their pets demonstrating enthusiasm for the Parkinson’s cause. Pets for Parkinson’s was a huge success thanks to many Canadians who shared adorable photos of their cats and dogs wearing SuperWalk T-shirts. The contest helped raise awareness about SuperWalk and Parkinson’s disease in Canada.

“For many people, their pet is an integral member of the family, and every year we have a large number of canine companions who attend Parkinson SuperWalk to show their support. We think this is a great way to have some fun and get more pets (and their families) involved in the cause,” said Joyce Gordon, Parkinson Society Canada President and CEO.

Proceeds from Parkinson SuperWalk help fund the valuable educational resources, support services, advocacy efforts and research provided by Parkinson Society Canada regional partners across Canada to individuals and families like the Sigurdsons.

Parkinson Society Canada acknowledges the generosity of Parkinson SuperWalk national sponsors: Teva Canada Innovation, Naturegg and Roots.

Online donations for Parkinson SuperWalk will be accepted until October 2, 2012 at parkinsonsuperwalk.ca.

Parkinson Society Canada National Research Program, 27 new awards

Parkinson Society Canada, together with its regional partners, is proudly supporting 27 new grant, fellowship and student awards, as of July 1, 2012:

  • 11 Pilot Project grants

(2 funded by Parkinson Society British Columbia and Parkinson Society Ottawa)

  • 2 New Investigator Awards
  • 4 Basic Research Fellowships

(1 funded by Parkinson Society British Columbia)

  • 1 Clinical Movement Disorders Fellowship, in partnership with TEVA Canada Innovation
  • 2 Clinical Research Fellowships
  • 5 Graduate Student Awards

(2 funded by Parkinson Society Saskatchewan and Parkinson Society Ottawa)

  • 1 Psychosocial Doctoral Award, in partnership with the Canadian Institutes of Health Research (CIHR) – Institute of Neurosciences, Mental Health & Addiction
  • 1 Psychosocial Research Grant, in partnership with CIHR – Institute of Neurosciences, Mental Health & Addiction

These new awards represent a total of $1,559,608 committed to support new research projects in Canada over the next two years.  Including the 15 research awards in their second year, the National Research Program is currently committed to investing $2,021,553 towards research.

2013-2015 research competition now open

Applications are now being accepted in the Graduate Studentship Award, Clinical Research Fellowship and Psychosocial Doctoral Training Award categories of the Parkinson Society Canada National Research Program. For more information, see Request for Applications.

Click here for more information on these awards, including project titles and amounts.

Current areas of research focus

Causes of Parkinson’s. Movement is usually controlled partly by a chemical called dopamine, which carries signals between nerve cells in the brain. Parkinson’s motor symptoms appear when a significant proportion of dopamine-producing cells have died gradually. Researchers are investigating the chemical or genetic triggers that start the cell death process in dopamine neurons. Understanding this sequence of events will ultimately enable scientists to develop treatments to stop or prevent the loss of dopamine-producing cells. In the future, this could lead to a cure for Parkinson’s disease.

Complications of Parkinson’s. Researchers are investigating motor and non-motor complications associated with Parkinson’s. The findings can lead to improved treatments and better quality of life for people with the disease.

Cognitive Impairment and Parkinson’s. Researchers are exploring how cognitive deficits affect the Parkinson brain. The more researchers discover about the links between Parkinson’s and cognitive changes, the greater their ability to develop specialized treatments for managing and preventing these symptoms.

Biomarkers. Biomarkers play an important role in determining whether a person has or is likely to develop a disease. Identifying biomarkers to detect the early stages of Parkinson’s would allow people with Parkinson’s to start treatments before significant nerve cell loss occurs and motor symptoms, such as resting tremors, appear. Biomarkers could also be used to spot people at risk of developing Parkinson’s, to improve diagnosis, to measure disease progression and to determine which treatment will work best.

Clinical Fellowships. People with Parkinson’s, regardless of where they live in Canada, deserve consistent, high quality care. Clinical Fellowships enable medical professionals, such as doctors, neurologists or neurosurgeons, to receive specialized training in caring for people with Parkinson’s. This ensures more Canadian medical specialists can provide high quality care to people with Parkinson’s.

Quality of Life. Quality of life research helps empower people with Parkinson’s and their families to live their lives to the fullest, despite the limitations of this disease. The researchers funded in this area come from a variety of health professions – nursing, physiotherapy, occupational therapy, speech language pathology and social work. Their findings can lead to better treatments, improved support services, and advocacy strategies that help policy makers better understand the particular challenges of Parkinson’s disease.

Kaylena Ehgoetz Martens, PhD candidate, University of Waterloo

Neuroscientist Kaylena Ehgoetz Martens is using an innovative new tool – virtual reality – to develop rehabilitation strategies to help people with Parkinson’s disease better navigate their environments and reduce their falls, freezing and shuffling. The PhD candidate at the University of Waterloo is determining how people with Parkinson’s perceive their environment and the movements of their own bodies.

“We’re trying to understand how brain dysfunction contributes to the control of walking. Then we want to translate that knowledge into rehab programs to give people with Parkinson’s disease better strategies to move and correctly perceive their environment.”

Cross-Canada bike tour raises money for research

Cory Welsh is cycling across Canada to raise awareness of Parkinson’s and money for research

Cory Welsh, 24, of Sarnia, Ontario received a warm reception and considerable media attention as he cycled across Canada to meet people with Parkinson’s, raise awareness of the disease and raise money for Parkinson Society Canada’s National Research Program.

The journey, honouring Cory’s father who has Parkinson’s, kicked off in Vancouver on June 26th and ended in Halifax on September 3rd.

You can contribute to Cory’s efforts by donating online at his Parkinson’s Cycle of Hope webpage, pdcycle.com.

Read more about Cory Welsh and the Parkinson’s Cycle of Hope.

Donald Calne Lecture

The prestigious 9th Donald Calne Lecture for members of the Parkinson’s community, including scientists, takes place at Terminal City Club, Vancouver, BC, on the evening of Thursday, October, 18, 2012. The presenter 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, in Vancouver, BC. His topic is Parkinson’s progress: from molecular genetics to medications. Space is limited to 200 guests. Register now to avoid disappointment.

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

Please rsvp by Thursday, October 11, 2012 to:

Parkinson Society British Columbia
Tel: (604) 662-3240 or 1-800-668-3330
Email: ldarch@parkinson.bc.ca

For more information about Dr. Matthew Farrer, his work, and the Donald Calne Lectureship, see The 9th Donald Calne Lectureship awarded to Dr. Matthew Farrer.

World Parkinson Congress 2013

Parkinson’s Buddies Program

Delegates will be arriving from all over the world to attend the World Parkinson Congress in Montreal in October 2013. What better way to reach out to delegates from other countries than by offering to become a Parkinson’s Buddy? Instead of waiting for the conference to begin, to make new friends, you can get a head start. When registration for WPC begins in January 2013, sign up to become a Parkinson’s Buddy and begin exchanging ideas, thoughts, experiences, coping strategies and skills with someone from another part of the world. In this age of the Internet, Skype, e-mail, Facebook and Twitter, making connections has never been easier. Watch for future information about how you can register for the WPC Parkinson’s Buddies program and welcome the world to WPC 2013.

WPC is coming to Montreal, October 2013… are you?

To help you promote WPC 2013, we have created a flyer for you to download and share with family and friends right here at home. Let’s make this the biggest and most successful World Parkinson Congress to date.

Parkinson’s: A global view

World Parkinson Congress 2013Over the next few issues of e-Parkinson Post, we will feature an interview with each of the Canadian Ambassadors for World Parkinson Congress 2013. The Ambassador’s role is to generate excitement about WPC 2013 in Canada and around the world.

First up is Bob Kuhn, a Vancouver lawyer, writer and speaker, diagnosed with Parkinson’s in 2006 at age 53. Bob recently completed a Round the World trip in 80, well actually 79, days.

Why did you answer the call to become a WPC 2013 Ambassador?

I was moved by WPC 2010 in Glasgow. I found that the relationships I formed there were particularly meaningful. They gave me a real sense of purpose and a better feel for the Parkinson’s disease community, which includes researchers, clinicians, therapists and people of all types who are committed to helping people with Parkinson’s. I had done a fair amount of speaking about Parkinson’s but nothing on an international scale.

Was the Round the World trip your idea?

I had planned to do a Round the World trip for some time; however, I’m not a sightseer, so having a purpose or theme helped define the trip for me. I was interested in meeting people who are part of the Parkinson’s community around the world, especially in some of the developing nations where they don’t have the kind of facilities that we have. I wanted to get a sense of what it’s like for them to have Parkinson’s. What were the differences? What were the similarities? What were their stories? At the same time, promoting WPC 2013 in Montreal was a natural. It came together very well.

The title of the tour was Shake up My World, which had a couple of meanings. The serious meaning was that I expected to experience Parkinson’s in a way that I hadn’t before, outside the context of North American, European or western culture.

We call it the World Parkinson Congress and I guess in one sense it is. However, we don’t get attendance from huge sectors of the world’s population, primarily because of economics but also due to a lack of awareness. I wanted to see what might be possible, in terms of inviting, including and relating to people who otherwise might not come to Montreal.

Bob Kuhn and Parky, his WPC 2013 mascot, take a break at the top of Machu Picchu Mountain in Peru

Where did you visit?

Fifteen countries: Peru, Chile, Argentina, South Africa, Rwanda, Kenya, Ethiopia, Kuwait, India, Thailand, Malaysia, Singapore, Australia, New Zealand and Fiji. These were all places I had never visited before. I met with people with Parkinson’s in all of the countries, except two, Peru and Malaysia.

Which encounters stand out in your mind?

Let me tell you about two.

The first was Rwanda where I went to the country not having any contact set up. I had tried for months to make contact with someone who was part of the Parkinson’s community but nobody knew anyone.  As it happened, I was asked to speak about my trip at a church one Sunday. I explained I was searching for people with Parkinson’s. After the service, a young woman came up to me and said, “My father has Parkinson’s and I would like for you to come and see him.” I had no idea what I was getting into. I said, “Sure, I will, as long as he wants to see me.”

It turned out that the woman’s father was a doctor, 67 years old. He had been diagnosed with Parkinson’s two years prior. After his diagnosis, he quit his practice. He shut down his social engagements, isolated himself from all of his friends and basically retreated to his house to drink alone. He admitted all of this to me. He was very depressed and was not engaging in life at all.

We had a long discussion about the disease. He hadn’t spoken to anybody else about his experience with Parkinson’s since he had been diagnosed. He appreciated having someone there just to listen, someone who had an understanding of what he was going through and how he had been devastated by this disease that had taken away his pride, his professional standing, his sense of purpose.

It made me realize something I experienced on a number of occasions, not just this once, that people feel very alone with this disease. It made me aware that the relationships that develop in the Parkinson’s community are critically important to dealing with the disease, having someone to encourage people, to give them a sense that they are not alone.

I challenged the doctor to see what he could do to form an organization in Rwanda that would maybe alleviate the kind of circumstances he had faced so that he could find a purpose in that and also assist other people. He was a doctor and he didn’t know anybody else who had Parkinson’s. It was really quite ironic.

The other story is quite different but has similar themes.

In Mumbai, India, I met with psychologist Dr. Maria Barretto (Coordinator, Parkinson Disease and Movement Disorder Society in Mumbai). She is a sparkplug in a country of 1.2 billion people. She helped develop the Parkinson’s work in Mumbai by developing groups that can get together for the purposes of therapy of different kinds. She has put together a team of people who are giving their heart and soul to the huge community of people with Parkinson’s, and getting people out of their homes and into groups where they can help support each other.

She gave me an inside look at what it’s like to have Parkinson’s in a developing country where medications are difficult to obtain and then only at high cost, where neurological support is not plentiful and where the culture, itself, works against support groups. People self-isolate not only due to the nature of the disease but also due to a culture that says the family will take care of you. There’s no other support system. People with Parkinson’s tend to stay at home. They’re out of sight and out of mind, so there’s little Parkinson’s awareness.

Most of the developing countries I visited had little public awareness of the disease. I asked dozens of people, “Do you know anybody who has Parkinson’s?” They would say, “No.” Then when I talked to people with Parkinson’s disease, I realized it’s because they don’t circulate. They don’t have celebrity spokespeople who could make Parkinson’s better known.

These encounters helped me see that relationships are a key factor. WPC is about developing relationships. It’s about information and encouragement from a medical and scientific point of view, but it’s also about relationships. It’s about the community, itself, looking at ways to make life better.

Did any of the people you met plan to attend WPC 2013?

Virtually everybody I did meet wanted to attend. I got the sense that they want to be part of the international, global community of Parkinson’s, but the economics often dictate otherwise. That was the biggest impediment. It’s a long way for somebody to fly from India to Montreal, then pay for accommodations and so on. It’s prohibitive for many of them. Quite a few of the people I met didn’t know what World Parkinson Congress was but the ones that did would say, “That’s just too far away and too expensive for me.”

I tried to encourage them by saying, “If you’re willing to come maybe there are other avenues we can explore to find ways to support people from developing nations to attend.” I think they have a tremendous amount to contribute. They can add a whole context that the developed world has, in large part, ignored when it talks about Parkinson’s disease. We talk about it in a context that’s completely different from theirs.

How has the trip changed you?

It has shaken up my world in many different respects. It brought me to a greater realization that relationships are a key factor in developing global awareness of Parkinson’s. You don’t influence a whole society or even a community within a society by ad campaigns. You influence them one person at a time. Just travelling to meet people where they were, and being interested in them and wanting to know what they were dealing with, gave me credibility with them. I became friends with people after a very short time and these are relationships I will continue.

It also changed my perspective about how we might be able to assist people in developing countries by approaching them, listening to them and finding out what their needs are, then assisting them in ways that meet their needs. If we care, we need to listen more.

As well, I think there’s a need for everyday heroes around the globe, people who can be portrayed accurately as coping well, dealing well, thriving even, despite the disease that we share.

What’s next?

I have come back with a truckload of not just memories but also ideas and relationships. It’s taking me longer than I thought to draw even tentative conclusions. I think there are many ways in which western culture needs to consider what it can do for the rest of the world to make the Parkinson’s community more inclusive and truly global. That’s what I want to see – a truly global World Parkinson Congress where we work together as a community that has representatives from the whole world.

What would you like for others to take from your experience?

It comes back to the idea of everyday heroes. People shy away from that as a label but it is a form of being an ambassador. All of us who have Parkinson’s are being watched for how we deal with the disease. We are, in fact, silent mentors, even if we don’t intend to be. We need to be aware of that and do what we can to encourage people with the disease to live well. That’s the personal theme of my blog, Positively Parkinson’s. How can we encourage each other? How can we represent each other in a way that is positive and that gives hope, purpose and significance to a life that has been seriously affected by a debilitating, degenerative, incurable disease?


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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.