Archive for February, 2013

Message from the editor

Marina Joseph

Marina Joseph

Welcome to the first issue of e-Parkinson Post for 2013.

In this issue, we focus on ways to manage Parkinson’s, particularly using approaches such as lifestyle changes and activities that promote a sense of empowerment.

Dr. Susan Fox provides a neurologist’s perspective and shares advice that she typically offers her patients.

Alice Templin describes successful self-management strategies she has used in her 12-year journey living with Parkinson’s.

We provide links to Parkinson Society resources that can assist with daily activity management as well as communicating with doctors.

We also prepare for World Parkinson Congress in Montreal, only eight months away.  Hear what inspires Canadian World Parkinson Congress ambassador Yvon Trepanier and plan to meet Yvon and the global Parkinson’s community.

And finally, a new National Research Program brochure is available. This summary identifies the areas of focus of the projects we’re funding, categories of grants and awards and how the research funding process works.  Download a copy of the National Research Program brochure now.

We want to hear from you. Please leave a note in the Comments section to let us know what you think of the articles. Your feedback will make this publication better. And if you really enjoy this newsletter, please pass along the link to someone you know so that they may enjoy it too.

Editor

P.S. Thank you to those of you who completed our online readership survey in December.

Resources for Living Well with Parkinson’s

While doctors and caregivers do play an integral role in the treatment and management of Parkinson’s disease the most important member of any care team is the person diagnosed with Parkinson’s.

Parkinson Society Canada has a variety of resources to help you stay informed to make individual choices.  We know that controlling symptoms, managing medications and working with a health care team can be a lot to juggle.

Tapping into some of our self-management resources will enable individuals to retain their independence longer, put less work and stress on their care team and have a better outlook for the future.  Here are a few suggestions to get started.

Resources for Self-Management

Taking Control

After receiving a Parkinson’s diagnosis people often don’t know how to proceed. Moving forward towards acceptance, assistance and management of symptoms is much easier with a little guidance. Parkinson Society Canada has helped many people over the years transition into a life with Parkinson’s with as little discomfort as possible.

We took our experience and knowledge and packaged it into the ’10 Steps to Taking Control’ handout. If you or someone you know has recently been diagnosed with Parkinson’s please download the Taking Control guide for free.

Download the ‘Taking Control – 10 Steps to help you cope’ guide here

Keeping Active

Problems with mobility and posture are common Parkinson’s symptoms from one person to the next. Managing those mobility issues means exercising on a regular basis but without a proper exercise regime that can be difficult. That’s why Parkinson Society Canada developed the Exercises for People With Parkinson’s booklet.

This guide will help people with Parkinson’s target maintain a healthier lifestyle and improve their mobility symptoms when they implement the regime a few times a week, or as often as possible. Ask your doctor what level of exercise is right for you and then, get active.

Download the Exercises for People with Parkinson’s booklet here

We also offer a ‘Physical Activity and Parkinson’s Disease’ resource on our website, with examples of the types of exercise that can help people with Parkinson’s and what specific symptoms those exercises can improve.

This guide comes with a companion chart to track your progress and is free to download. Visit the Physical Activity and Parkinson’s Disease webpage and download your physical activity tracking chart to help improve your mobility.

Both resources were developed in partnership with the Canadian Physiotherapy Association.

A Guide to the Non-Motor Symptoms of Parkinson’s Disease

A Guide to the Non-Motor Symptoms of Parkinson’s DiseasePeople with Parkinson’s learn that the symptoms of Parkinson’s are more than just tremors, problems with posture and low energy reserves. Often people experience difficulty getting a solid night’s sleep, cognitive issues, swallowing problems and even bladder dysfunction. These features are often not identified by or discussed with the family physician.

The Guide to the Non-Motor Symptoms will help you and your doctor identify these symptoms and discuss the best treatment plan. This patient-friendly booklet, and its companion guide for family physicians, is based on research funded in part by Parkinson Society Canada.

Download the Non-Motor Guide here.

I have Parkinson’s Medication Card
Getting your Parkinson’s medications on the regulated schedule prescribed by your doctor is important but others who help you along your journey with Parkinson’s may not realise how important it is.. Invariably, from time to time, people with Parkinson’s will need to visit care facilities, like hospitals, to get additional medical assistance. Keeping the staff informed of your needs isn’t always easy.

Carrying your I have Parkinson’s Medication card will alert staff to the importance of adhering to your medication routine. There is also an education program geared to staff to learn more about Get it on Time that contains handouts and medications schedules that will help your health care team apply medications at your regulated intervals and keep you as healthy as possible during your stay.

Download the ‘Get it on time’ medication card here

Other Resources

Parkinson Society Canada has a wide selection of free resources available for both people with Parkinson’s and their care partners. Stay informed and download the Parkinson’s Facts sheet. Please visit the Resources section of our website to see a full list or contact the regional partner closest to you for more direct assistance.

If you’d like to talk to someone at Parkinson Society Canada about the resources available for free please visit the contact us page of our website or call 1-800-565-3000 for direct assistance.

Ask the expert: Self-management in Parkinson’s

Dr. Susan Fox, Neurologist, Movement Disorders Clinic, Toronto Western Hospital and Associate Professor, Department of Medicine, Division of Neurology, University of Toronto

Dr. Susan Fox, Neurologist, Movement Disorders Clinic, Toronto Western Hospital and Associate Professor, Department of Medicine, Division of Neurology, University of Toronto

Parkinson Society Canada recently spoke with Dr. Susan Fox, a neurologist, and asked her a series of questions on self-management of Parkinson’s disease. Dr. Fox shares her expertise, below, and gives some tips for people with Parkinson’s looking to self-manage their condition.

How would you define self-management in Parkinson’s?

I think it is the concept of having patients take on some of the active management of Parkinson’s disease themselves rather than letting it control them; so it involves people managing their day-to-day schedule and lifestyle better as a way of trying to minimize the impact of Parkinson’s on what they want to do. I certainly encourage it with my patients all the time but I’m not certain I would put a label to it.

What might be a better way of talking about it?

I think self-management is a good term to use. It’s a matter of getting patients to be more proactive in improving their symptoms by doing things like getting more sleep, eating regularly a good healthy diet, taking their tablets on time and, particularly, exercising. Self-management is also about having a positive attitude – seeing the glass as half-full rather than half-empty.

Has it been shown to make a difference?

It’s almost impossible to measure because it’s so subjective. It would be interesting to research or audit but I’m not aware that anyone has done controlled clinical trials.

So, what are the perceived benefits for the person with Parkinson’s?

Anxiety is often a big component of the disease. Parkinson’s brings on many changes, but when people learn to keep their life more structured by managing the disease better themselves, they begin to feel more confident. This often reduces anxiety and enables people to feel better overall. It also takes some of the pressure off the family when the person with Parkinson’s is proactive in trying to cope with this chronic disease.

What is the physician’s role?

I play a reinforcement role. I emphasize that regular sleep, good quality food and exercise are extremely important when people have a chronic neurological disease that affects their motor function. Reminding patients about this each time they come to the clinic helps keep the message forefront in the mind. However, there will be some aspects that I can’t help patients resolve, such as changes in their home environment or developing a social support network. They will have to take on some of those responsibilities themselves.

Are there any risks to self-management?

In self-managing their medications, some people may take a higher dose than they should or may not stick to the recommended timing which can put people with Parkinson’s at risk of developing serious problems, but that’s a minority of people. Generally there aren’t any risks.

Who is likely to have the greatest difficulty with self-management?

Self-management will be more of a challenge for people who live alone, who don’t have close family or friends, who are fairly disabled or living in care or residential homes.

Having good social support is key to enabling people to feel that they can try to manage aspects of Parkinson’s beyond medication and medical intervention. When you have good support it is much easier to do that.

Is self-management discussed in the new Canadian Guidelines on Parkinson’s Disease?

The Canadian Guidelines on Parkinson’s Disease has a section on communication where it discusses the doctor-patient relationship, but self-management isn’t there as a specific category on its own. There will be revisions to the Guidelines, at some point in the future, so this could be something that we take a look at.

Building social support

Dr. Fox suggests:

  • Look to a variety of health care professionals.
  • Seek out helpful resources, such as groups that provide exercise therapy. Make an effort to join them and participate on a regular basis.
  • Join a support group. It is an excellent way to help yourself and help other people with Parkinson’s.
  • Enlist family members to keep you on track. They can reinforce the messages from the doctor and health care professionals.

It’s your move: Self-managing Parkinson’s

Alice Templin cross-country skiing in the Gatineau Hills

Alice Templin cross-country skiing in the Gatineau Hills

When Alice Templin’s voice became weaker and slightly raspy due to Parkinson’s, two options sprang to her mind. “I could go for speech therapy or perhaps join a choir.” Alice chose the choir, after discussing it with her neurologist. “We thought, why not try the choir first. It would be fun. It’s a non-medical approach. And it might achieve my purposes for the time being.”

Living with a chronic neurological condition like Parkinson’s means having to make many daily decisions about self-care. The choices may change over time, but at the centre of it all is discovering what works best for you.

Alice adopted her proactive approach to Parkinson’s soon after her diagnosis in 2000. She was aware that stress can aggravate symptoms, so she began thinking about ways to manage day-to-day activity. After discussing it with her husband, she decided against returning to full-time work. Following many years working as a physiotherapist, Alice was in the midst of training for a new career as an English as a Second Language (ESL) teacher, and began volunteering while she completed the program.

Twelve years later, Alice still volunteers in ESL and occasionally supply teaches to maintain her certification. She notes, “I controlled my workload yet maintained that sense of contribution and self-worth by being involved in something outside the Parkinson’s community. I didn’t want my whole life to be about Parkinson’s.”

For Alice, self-management in Parkinson’s means that, “as a person with Parkinson’s, you are an active part of the care team, possibly even the team leader, because you are more in tune with your symptoms and the changes that emerge.”

Alice counts her neurologist, the clinic nurse, her family doctor, a physiotherapist and massage therapist, as part of her team.

“Some team members will come and go depending on the situation but they are all there for me when I need to call on them,” she says. “The Parkinson Society is also part of my team, as are my husband, my family and friends.”

Alice believes that a little bit of risk taking can also be helpful. In 2010, she and a friend hiked the 800 kilometre Camino de Santiago in Spain, 20 kilometres a day, for 40 days and raised over $13,000 for Parkinson Society Ottawa programs and services.

“I didn’t think I could do that much walking but I did it and it was wonderful.” She recalls.

Today, her less hectic pace includes regular walks with a friend, attendance at an exercise class for able-bodied people, cross-country skiing and snowshoeing in winter and cycling in summer.

With Parkinson’s as a part of her life, Alice maintains a vital connection to the Parkinson community as a regular volunteer and support group member. She also sits on two of the committees designing the program for World Parkinson Congress 2013 and finds the experience to be “both humbling and exciting.”

On the topic of how self-management makes a difference, Alice says, “It gives me a certain amount of control in what is happening to my life. It gives me a sense that I’m doing the best I can. It also makes me realize that I still have a very good life.”

Alice’s tips for self-managing Parkinson’s

  • Know yourself.
  • Learn about Parkinson’s.
  • Take charge.
  • Build and engage your team.
  • Take risks; stretch yourself.
  • Stay active.
  • Connect with the Parkinson’s community.
  • Keep a balance in life.

Meet the World Parkinson Congress 2013 Ambassadors: Yvon Trepanier

Yvon Trépanier

Yvon Trépanier

Yvon Trépanier is a retired schoolteacher specializing in French, Spanish and Japanese languages. He was diagnosed with Parkinson’s in 2002, at the age of 47 and is one of the three Canadian Ambassadors out of a total group of 12 attending World Parkinson Congress 2013.

Why did you agree to become a WPC 2013 Ambassador?

I jumped at this opportunity to be on the front lines of the global Parkinson’s community because I believe very strongly that we have a responsibility to support each other.

What are you working on?

Spreading the word. For the past 18 months, I’ve been involved with others in putting up posters and pamphlets advertising the Congress at various events and workshops. We have also been working with travel agencies to develop one-stop hotel and travel packages that will make it easier for people to plan their attendance. Now that registration is open and the program has been finalized, I’m urging as many people as possible to come to Montreal in October.

What reasons do you give for attending WPC 2013?

It’s an excellent way to show solidarity with people with Parkinson’s from all over the world. Just making the decision to attend is in itself empowering. I remember when I attended my first WPC, I wanted to meet people like me and see how they deal with Parkinson’s. It was an enlightening experience.

Congress also showcases the talents of people with Parkinson’s. In previous years, there has been an art exhibition; this year, there’s a video contest. It is a wonderful reminder that people with Parkinson’s are living full lives.

Then there is the fact that the conference is open to everyone connected to the Parkinson’s community. Researchers can sometimes work for years without ever rubbing shoulders with a person with Parkinson’s. Congress remedies that. There are sessions geared to people with Parkinson’s, family members, scientists, neurologists, social workers and other groups and, of course, there are many social and networking opportunities.

On a more personal note, I’m looking forward to finally meeting the 11 other WPC Ambassadors at the conference. Until now, we have linked by telephone. It will be fun to see each other in person.

Has anything surprised you during your Ambassadorship?

It has been interesting to discover that Canada is at the forefront of movements that support the Parkinson’s community. There are some countries where Parkinson’s doesn’t receive much attention, but events like WPC 2013 can help people realize that they are not alone, that they have support and that it is possible to take action. It has been exciting to work with people from around the world, share with them what we are doing and, I hope, inspire them to do something as well.

Have you missed previous issues of eParkinsonPost? Read about Bob Kuhn and Ryan Tripp, two other Parkinson’s ambassadors from Canada, who will be joining Yvon in Montreal.

World Parkinson Congress 2013 Update

World Parkinson Congress 2013

World Parkinson Congress (www.worldpdcongress.org) is being held in Montreal, Canada. from October 1st to 4th. Researchers, medical professionals and people with Parkinson’s from all across the globe will be attending to share ideas, experiences and to exchange advancements in treatment and care management. Visit  the WPC website for details about all WPC 2013 activities.

Attending the 2013 Congress gives people with Parkinson’s the chance to engage and network with the greater Parkinson’s community and take a more active role in their future with PD.

Registration to attend is now open online. Visit the World Parkinson Congress registration page with hotel and travel information included and register early as rates will go up.

Parkinson Society Canada hopes to welcome at least 1,000 attendees from Canada. Contact the regional partner organization closest to you to get more information on travel arrangements and enquire about possible travel grants.

Key Dates and Deadlines

Here are some important dates and deadlines to keep in mind as the opening for World Parkinson Congress draws closer:

Abstract Submission Deadline – April 15, 2013

Parkinson’s researchers, health care professionals and people living with Parkinson’s are encouraged to submit abstracts to the WPC poster presentation that will be shown at congress in Montreal. For full details on abstract submission guidelines please visit the Provisional Program and Call for Abstracts programs available online.

Video Competition Submission Deadline – May 8, 2013

The World Parkinson Congress 2013 invites people with Parkinson’s and their care partners to make a video about your experiences living with Parkinson disease. Learn more and submit your own video by May 8, 2013 at www.worldpdcongress.org/2013VideoCompetition.

Read about three Canadian ambassadors who will be attending World Parkinson Congress:  Ryan Tripp, Bob Kuhn and Yvon Trepanier.


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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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