Welcome to the first edition of e-ParkinsonPost for 2011.

April is Parkinson’s Awareness Month. Throughout April, our 10 regional partners have scheduled a variety of events in communities across Canada – tulip sales, concerts, breakfasts, wing nights, scrabble tournaments, art shows, educational workshops and more. Visit www.parkinson.ca, to find out what is happening in your area. Catch the energy. Get involved.

One way to get involved is to sign the Global Parkinson’s Pledge to make Parkinson’s a health, research, social and economic priority around the world. As we mentioned in a previous issue, Canada will host the World Parkinson Congress in Montreal in 2013. This is the only global Parkinson’s conference that brings together the entire Parkinson’s community. In preparation for this exciting event, and as the hosts for 2013, we invite you to show your support, as Canadians and as people who care deeply about finding a cure, finding new hope and making life better for those who live with Parkinson’s every day. Sign the pledge at www.parkinson.ca.

Also in this issue of e-ParkinsonPost, we share with you some of the articles we have submitted to the associations for those allied health professionals who work with people with Parkinson’s:

• the effect of cognitive changes on communication in Parkinson`s (Canadian Association of Speech-Language Pathologists and Audiologists)
• how occupational therapy can assist in Parkinson’s (Canadian Association of Occupational Therapists)
• what physiotherapists need to know about communicating with clients with Parkinson’s (Canadian Physiotherapy Association)
• palliative care in Parkinson’s (Hospital News)

You will also find information on ‘Get it on time’, a new program we are launching to educate healthcare professionals about adhering to Parkinson’s medication schedules. Read about one of our 13 funded women researchers as she describes what attracted her to neuroscience. We also profile adventurous women who recently climbed Mount Kilimanjaro and walked the Camino while raising funds for Parkinson’s.

Online registration is now open for Parkinson SuperWalk 2011 at www.parkinsonsuperwalk.ca.

We also announce the details for this year’s Donald Calne Lecture, highlight Parkinson Society Canada’s participation in Canada’s first-ever National Brain Awareness Month and bring you up-to-date on our research competitions.

We want to hear from you. . . New this issue is a Comments section where you can let us know if you like what you have read or if you have other comments. Your questions, thoughts and ideas for future issues are always welcome.

Finally I want to thank EMD Serono for their support of e-ParkinsonPost which makes producing this e-publication possible.

We hope you enjoy this issue.
Marjie Zacks

Editor

Researchers Angela South (r.) and Jacob Penner in the MRI Research Suite at the Robarts Research Institute, University of Western Ontario.

New research into the non-motor symptoms of Parkinson’s is revealing that people with Parkinson’s disease experience subtle changes in thinking ability and language right from the start. In fact, for approximately 5% of people, cognitive changes precede the onset of motor symptoms. These changes may affect all areas of language, including comprehension and expression in both verbal and nonverbal communications.

Affected areas include:

• Attention. Because people have difficulty filtering out non-salient information, they may have trouble communicating when there are multiple distractions or multiple speakers. This may affect the ability to understand information and take in a large volume of information.
• Language structure. The difficulty of processing and producing complex syntax both written and auditory and difficulty with drawing inferences can affect conversation and reading. As a result, people with Parkinson’s may use simplified sentence structures and less “rich” communication.
• Memory. Retrieving information can be more of a problem than storing information, so people with Parkinson’s can benefit from strategies that make it easier to retrieve information and break it into smaller units.
• Emotional processing. There is evidence that the masked facial expression in Parkinson’s is not just a matter of rigidity and stiffness in the facial muscles; it has a cognitive component, as well. People have difficulty both expressing and understanding emotions, particularly negative emotions such as sadness and anger, in a variety of ways, including facial expression, changes in tone of voice, inflection and volume, and words relating to emotional concepts.
• Executive function. Problems in this area exist from the early stages and may appear as a delayed ability to organize language, integrate information, and identify and modify language strategies.
• Word finding. People have problems with generating words. They may also have more difficulty with verbs than nouns. As a result, a person’s language may sound vague or rambling. One person with Parkinson’s said, “I find I have to use a lot of words to convey what I’m thinking.”
• Social communication skills. In conversation, people may have difficulty with turn-taking, initiating topics, maintaining topics and drawing references.
• Mood. Depression and apathy are common in Parkinson’s and they can reduce cognitive performance. However, “If someone is slow to communicate and has emotional processing impairments, this may be perceived as depression when it may, in fact, be a function of communication changes related to cognition and language skills,” says Angela South, a speech-language pathologist and PhD Student at the University of Western Ontario in London, Ontario. South’s research on cognitive-linguistic deficits in Parkinson’s and the impact on the communication dynamic between individuals and their family care partners is funded, in part, by a Graduate Student Award from Parkinson Society Canada. This work may assist speech-language pathologists in improving communication outcomes for people with Parkinson’s from the early stages of the disease and as the disease progresses.

Read Effective Communication Cognitive Impairment in Parkinson’s for more information and helpful tips for people with Parkinson’s and care partners.

Parkinson Society Canada is piloting a new program to ensure Canadians with Parkinson’s get their medication on time, in long-term care facilities and in hospital emergency departments. The ‘Get it on time’ program addresses an issue that is not well known among the health care provider population – the need for people with Parkinson’s to receive medication on time, every time, so that their symptoms do not get out of control, sending them on a downward spiral that can have devastating consequences.

First developed in the United Kingdom, the program has been adapted to the Canadian health care environment. The goal is to increase understanding of Parkinson’s disease among front line and nursing staff. The program includes educational materials, in service training, communications tools such as information kits, posters, and innovative ‘Get it on time’ stickers for individual care plans.

The campaign also encourages the person with Parkinson’s to bring their meds to the hospital or care facility so they can continue to self-medicate. “People living with Parkinson’s have said this is a major priority”, said Joyce Gordon, President & CEO, Parkinson Society Canada. “We are working with long-term care facilities and hospitals in a number of regions to help their staff members provide the safest and best possible care,” she added.

The need for the program was readily apparent, as people living with Parkinson’s and their care partners have shared numerous stories of their difficulties in hospitals and care-facility settings with Parkinson Society Canada. Not receiving medication on time causes many potentially disastrous, negative effects on person’s with Parkinson’s health.

People with Parkinson’s are experts in managing their symptoms. Adhering to the individual’s usual medication routine can help staff. As one person with Parkinson’s said, “if you give me my meds an hour before I have to get out of bed, I’ll probably be able to wash and dress myself.”

The ‘Get it on time’ materials are written in the voice of people with Parkinson’s and their care partners. They shared their stories with Parkinson Society Canada to help educate health care staff so others would not experience the difficulties and set-backs in managing Parkinson’s.

The program is being piloted in communities in Quebec, Ontario and Saskatchewan in partnership with regional Parkinson Societies.

For more information on the pilot project, contact: general.info@parkinson.ca.

(Written for Canadian Association of Occupational Therapists publication, OT Now)

April is Parkinson’s Awareness Month. Over 100,000 Canadians have Parkinson’s disease, making it the second most common brain disease in Canada. Parkinson’s is a complex disease. It’s not just about tremor, stiffness, rigidity, postural instability and poor balance/coordination; it has cognitive aspects, as well. Occupational therapists like Sheri Corkum, an occupational therapist at the Movement Disorders Centre in Markham, ON, can help people with Parkinson’s manage their disease symptoms and have better quality of life through:

Advice about managing activities of daily living (ADLs). Problems with multi-tasking are common in Parkinson’s. This is a cognitive issue as well as a motor issue. “We recommend that people do their ADLs sitting down and we help them learn to isolate one movement at a time and one step of the movement at a time,” says Corkum. “Incorporating energy-conservation techniques is also critical since fatigue is common.”

Clear communication. Communication difficulties in Parkinson’s go beyond the motor issues of speech production and writing. People may experience subtle changes in their thinking ability and language early in the disease, so when working with clients, it is important to simplify the communication environment by speaking slowly, clearly and carefully. It is suggested to use simple words and short sentences. If necessary, repeat your message using different words. Ask closed – yes or no – questions. Be aware of your tone of voice, facial expression, and body language.

Movement and visual strategies to address shuffling and freezing. Shuffling and freezing severely impair mobility in Parkinson’s. Corkum suggests, “Movement strategies include side-to-side weight shifting and lifting the toe and foot of the unweighted foot to take an exaggerated step. Visual aids could include lines of tape that mimic steps to help people step forward past them, laser canes and walkers.”

Using contrasting colours as a strategy to help daily activities in the home. People with Parkinson’s have decreased color discrimination and contrast sensitivity.

Exercise recommendations. Regular exercise has been shown to be beneficial for people with Parkinson’s. Corkum, who leads an exercise program for people with movement disorders, places a high premium on:

• Flexibility exercises, especially neck mobility exercises, such as yoga.
• Endurance exercises, such as walking. “Walking technique is important. Especially, when people are at the earlier stages of Parkinson’s, we encourage them to maximize their walking technique – take big steps, lift the toes, put the heel down first, maintain proper posture when walking, with weight upright and not flexed forward, good arm swing. These are things that need to be emphasized.”

Depression. Depression in Parkinson’s can be part of the actual Parkinson’s disease process and is thought to be related to neurochemical changes in the brain. Researchers estimate that 50% of people with Parkinson’s experience depression. Occupational therapists can play a role in helping individuals and families seek treatment for depression. “As part of our work, we help people understand the high prevalence of depression in Parkinson’s, the side-effects, the need for a clinical diagnosis and the availability of treatment – not just medications but day programs, activation, ways to link people socially and get them to function in new ways,” says Nira Rittenberg, an occupational therapist working with the Geriatric Psychiatry Community Service at Baycrest Centre in Toronto, ON. Rittenberg also notes that caregivers themselves are at high risk for depression, so they, too, need support and help.

(Written for Canadian Physiotherapy Association publication, CPA News)

Besides being aware of the physical demands of Parkinson’s, did you know that cognitive changes in Parkinson’s affect people’s ability to understand and produce verbal and non-verbal communications? These changes can result in misinterpretation of verbal instructions, facial gestures and body language; delays in processing information; delayed and/or lengthy responses.

When communicating with clients with Parkinson’s, it is best to speak slowly, clearly and carefully, using simple words and short sentences. If necessary, repeat your message using different words. Ask the person to say it back to you, to ensure comprehension. Ask closed, yes or no, questions. Also, be aware of your tone of voice, facial expression and body language. Give people time to respond.

April is Parkinson’s Awareness Month. Parkinson Society Canada has been supporting Canadians living with Parkinson’s since 1965.

Visit www.parkinson.ca to

• Test your Parkinson’s IQ.
• Download Exercises for People with Parkinson’s, a handy resource for your clients.
  This booklet was developed with input from physiotherapists at Canadian Movement Disorder Clinics and reviewed by the Canadian Physiotherapy Association.

(This article appears in the April 2011 edition of Hospital News)

Sandy Sadler was alarmed, when her mother’s neurologist suggested that she might want to start looking into palliative care. “I always connected the term, palliative care, with end of life and I didn’t like that,” says Sadler. “I wondered, is the neurologist telling us that Mom is going to die soon?”

Sandy Sadler and her mother who was diagnosed originally with a movement disorder in 2000.

Two years later, Sadler’s 70-year-old mother, who has Parkinson’s disease, continues to live at home with her husband and attends a palliative care clinic at Toronto Western Hospital’s Movement Disorders Centre which operates the first clinic in the world dedicated to palliative care in Parkinson’s disease and related disorders.

In addition to Parkinson’s treatment, her mother gets medications that help her sleep better at night, that minimize confusion and hallucination, and alleviate excruciating pain from years of stooped posture. Sadler has a new appreciation of palliative care in Parkinson’s, seeing it as a matter of, “Let’s make this lady’s quality of life as good as we can for whatever time she has left and that could be for many more years.”

Dr. Janis Miyasaki, Associate Clinical Director and Deputy Physician-in-Chief at the Movement Disorders Centre at the Toronto Western Hospital

Dr. Janis Miyasaki, Associate Clinical Director and Deputy Physician-in-Chief at the Movement Disorders Centre at the Toronto Western Hospital says, “Palliative care is particularly important in Parkinson’s disease, because, as the illness progresses, patients are less able to use the dopamine-replacement medications, so they experience a serious decline in motor function.”

“As well, in the later stages of Parkinson’s, people begin to develop other complications that are part of the illness.” The complications may include cognitive decline, possibly dementia; mood disorders such as depression and anxiety; autonomic dysfunction such as a drop in blood pressure and swallowing problems; and sleep disturbance.

Pain can also be a significant problem. “Pain is often under-addressed in Parkinson’s patients and it has negative impacts on quality of life, reducing people’s ability to participate in physical activities and making it difficult for caregivers to provide proper care,” says Dr. Miyasaki.

“The main benefit of our clinic is that we stop thinking of improving movement at all costs and we look at the patient and the family as a whole.”

This means approaching patients while they are still cognitively able to make choices and informing them about what to expect, helping families plan living and caregiving arrangements, providing pain and symptom relief, and providing referrals to home or hospice palliative care physicians for the last six months of life to help patients and families prepare for the end and address symptoms that may occur when death is imminent.

The continuum of care is important, notes Dr. Miyasaki, “because the fear of abandonment, the fear of the unknown is very large for patients. We need to be able to reassure patients and families that service and assistance is available right up until the time of death.”

In view of the shortage of palliative care physicians across Canada, Dr. Miyasaki says, “Practically speaking, family physicians will need to provide more and more of the non-specialized palliative care and neurologists will need to develop the skills to provide specialized palliative care for their patients.”

What families can do

Dr. Miyasaki offers some suggestions:

Start planning long before the person is imminently dying. Is it time to change residence? Is formal caregiving help needed? Would a day program provide relief? Should adult children take a more active role in their parent’s care and decision-making?

Have the conversation. “Many times, patients want to discuss future care but family members don’t. However, patients welcome the opportunity to let family members know their preferences.”

Ask the doctor about palliative care while the person with Parkinson’s is still able to make decisions. “When people start noticing a continual decline in health or notice their relative becoming more frail or forgetful, then it’s time to ask about palliative care.”

Contact the palliative care specialist when death is imminent. “If the person is suddenly refusing food or seems to have difficulty breathing, call the palliative care specialist; he or she can help your loved one.”

Sandy Sadler adds, “Think of palliative care as comfort care. It’s a wonderful resource for enabling the person with Parkinson’s to have quality of life and it’s just as beneficial for the family.”

By Dr. Isabelle Boileau

I chose neuroscience because I wanted to understand how minute changes in brain chemistry can lead to remarkable changes in behaviour and function and can lead to disease.

Dr. Isabelle Boileau

Motivated by my desire to learn about the neurochemistry of human behaviour, the first conscious decision of my scientific career was to work in the area of molecular imaging, using positron emission tomography (PET scan). I am drawn to this area because it allows us to study, while people are awake, how the brain adapts, at the molecular level, to treatment and disease, as a first step towards being able to make informed decisions about therapeutic strategies. With its ability to map normal and pathological neurochemical processes in the living brain, PET technology has the potential to accelerate the progression from experimentation to clinical applications that will benefit people.

I am particularly interested in finding out why Parkinson’s symptoms re-emerge after people have shown dramatic improvements from taking levodopa. My research is focused on trying to understand what adaptations in the brain’s dopamine system, if any, can explain the occurrence of the side-effects of dopamine replacement therapy.

Right now, we don’t know what mechanisms are responsible for increased sensitivity to the effects of anti-parkinsonian drugs. My lab is trying to understand the changes in the brain that account for the side-effects of long-term treatment with these drugs. We think that the emergence of disabling side-effects may be due to a change in the number of D3 dopamine receptors in the brain. (The current drugs target these D3 dopamine receptors.) We are using PET technology to investigate the number of D3 dopamine receptors in the brains of people with Parkinson’s who develop side-effects to dopamine replacement therapy.

So far, we have been able to show that, unlike the D2 dopamine receptor, the D3 dopamine receptor level in the brain is decreased in never-treated Parkinson’s disease but appears to be increased following anti-parkinsonian medication. With funding from Parkinson Society Canada, we are now investigating whether this increase can be replicated in a larger sample and is related to treatment complications such as dyskinesias (uncontrolled movements).

The most rewarding aspect of working in the field of Parkinson’s is sharing scientific thoughts with patients. They are always a step ahead of me. Their interest in my work is the best way of measuring its value.

To young students who are considering a career in science, I say, good for you. This is an exciting time to be starting a scientific career. In addition to new and exciting technological developments and an acceleration of data production in all medical fields, new modes of communication are bringing scientific thinking into the public sphere. More than ever, science and scientific questions are shaping our culture.

Dr. Isabelle Boileau is a Clinical Research Scientist at the Centre for Addiction and Mental Health in Toronto and an Assistant Professor in the Department of Psychiatry at the University of Toronto. She is the recipient of a Parkinson Society Canada New Investigator Award.

For more information on her research and participating in a clinical trial visit www.parkinson.ca.

The Global Parkinson’s Pledge was launched at the World Parkinson Congress in Glasgow, Scotland on September 28, 2010, to help build a global Parkinson’s movement and to make Parkinson’s a health, research, social and economic priority around the world. The goal is to collect 1 million signatures by the next World Parkinson Congress to be held in Montreal, in October, 2013.

With 100,000 Canadians with Parkinson’s disease, if each person with Parkinson’s signs the pledge and invites five friends to sign, Canada will have over a half million signatures, outstripping every other country in the world.

Be one in a million:

• sign the pledge online at parkinson.ca

• invite 5 friends to also sign

Reta Currie, an Ottawa nurse and wellness expert met with Parkinson Society Ottawa, just over a year ago, to discuss her dream of building a team to climb Mt. Kilimanjaro while raising awareness and funds for Parkinson Societies across Canada. Reta was determined to make a difference and she wanted to do this on behalf of her friends with Parkinson’s.

Kili summit - Members of the Kili Conquerors team, Jocelyn Green, Erica Curtis and Sandy Bookalam with the Parkinson Society Canada flag atop Mt. Kilimanjaro

She recruited other members for her team: Her partner, Sandy Bookalam, a medical laboratory technologist at the Ottawa Hospital. (February 2011 would mark their 20th anniversary.) Erica Curtis from Barrie, ON, Reta’s long-time friend from nursing school, who was diagnosed with Parkinson’s three years ago. Jocelyn Green, from Victoria, BC, whose brother-in-law, Bill, was diagnosed with Parkinson’s six years ago. And Joyce Lindsay, from Barrie, ON, who came forward in the closing days of preparations to join the four on their adventure.

Their journey was not only a fundraising endeavour, it was an inspiration to many, both within and outside the Parkinson community. During their trek, the Kili Conquerors encountered a fellow climber who was so touched by their story that, on returning home, he submitted a $1000 donation with the message, “It was a great pleasure to have met all of you on the climb. It made the experience that much more memorable to see friends uniting around such a worthy cause. Erica was truly inspirational.”

Climbing Mt. Kilimanjaro

“The most important part was the journey itself, not the summit. The people experiences are the memories I will cherish – journeying with my fabulous friends and the wonderful guides and porters. The people at home made me feel they were truly with me on some of the hardest slogs. I will always be grateful to them for so wholeheartedly supporting the Parkinson Society. I also learned a few things about my Parkinson symptoms that I did not want to have so clearly demonstrated. My balance wasn’t great on the uneven ground and by the end of each day I was exhausted but apparently my determination was up to the challenge and I got lots of help from the guides.” – Erica Curtis

Joyce Lindsay, Erica Curtis, Sandy Bookalam, Reta Currie, Jocelyn Green

The Kili Conquerors conquered in many ways. They not only reached the summit of Mt. Kilimanjaro, the highest peak in Africa, on February 14, 2011, but together they have accomplished another tremendous goal of raising over $38,000 for Parkinson Societies across Canada! From all of us, congratulations and thank you to each of you for your hard work and dedication. Thanks for letting us be a part of this amazing journey.

If you or your loved ones are planning an event or personal challenge and want to discuss raising awareness and funds for Parkinson’s, please contact your local Parkinson Society.

On May 18, 2010, Alice Templin set out on the hike of a lifetime, the 800-kilometre Camino de Santiago de Compostela in Spain. It’s a daunting challenge for most people, never mind someone whose walking is “not normal, not natural.”

Alice, 61, has Parkinson’s disease, the second most common brain disorder in Canada. It affects over 100,000 Canadians. Apart from her gait, Alice’s most visible symptoms are tremor in her right hand and slow movement.

The cognitive effects are less obvious. “Sometimes I can’t find the word I’m looking for or I don’t explain things succinctly or accurately,” says Alice. “I find I have to use a lot of words to convey what I’m thinking.”

Diagnosed with Parkinson’s, in 2000, just as she was transitioning into a new career as an English as a Second Language instructor, Alice says, “From my previous work as a physiotherapist, I knew what some of the end-stages of Parkinson’s might look like, so I focused, instead, on one step at a time. Then and now, I have chosen to focus on where I am and what I can do.” Walk the Camino, for instance, with her hiking buddy, Claire Veenstra. The duo decided to make the walk a fundraiser in aid of the thousands of Canadians unable to walk the distance. With support from family and friends, Alice and Claire crossed the finish line on June 25, 2010 and raised over $13,000 for Parkinson Society Ottawa programs and services.

“Adding the fundraising element made it a richer experience,” says Alice. “There was a sense of journeying with each other; a sense that we’re not alone in whatever we want to do or in what challenges we face.”

After 10 years of living with Parkinson’s, Alice says, “It hasn’t been as scary as I thought it might be. I’m one of the fortunate ones where the progression has been slow.”

Alice Templin (l.) and Claire Veenstra

This Parkinson’s support group member and dedicated Parkinson Society Ottawa volunteer says, “Thanks to research, we’re already a lot better at managing Parkinson’s. I do live in hope that we’re going to find a cure.”

Read more Stories from the Front on Parkinson Society Canada’s website.

Joyce Gordon, CEO of Parkinson Society Canada and Chair of the Neurological Health Charities Canada coalition welcomed more than 300 members of the Canadian brain community to launch Canada’s first-ever National Brain Awareness Month in March, an effort to shine the spotlight on issues facing almost 11 million Canadians living with neurological and psychiatric conditions.

Guests included people living with brain conditions, caregivers, researchers, clinicians, health charities and policy makers from across Canada. Canadian comedian, Rick Green, was the evening’s emcee introducing keynote speakers including The Honourable Deb Matthews, Ontario Minister of Health and Long-Term Care, and Carl Schoonover, author of the book, Portraits of the Mind: Visualizing the Brain from Antiquity to the 21st Century.

“Our goal is to create a platform for dialogue about brain health, and the issues facing so many Canadians and their families,” said Joyce Gordon.  “Individuals and organizations across Canada can leverage National Brain Awareness Month to increase public awareness and education, and to generate important discussions about public policy.”

As part of National Brain Awareness Month, the members of Neurological Health Charities Canada presented 2011 Change-Maker Awards to three organizations that have demonstrated outstanding leadership in inclusion, innovation and integration for the benefit of Canadians living with brain conditions.

Congratulations to:

Baycrest

Holland Bloorview Kids Rehabilitation Hospital

The Globe and Mail, special mention to André Picard

Parkinson Society Canada CEO and NHCC Chair, Joyce Gordon (right) and Baycrest CEO, Dr. William Reichman (centre) with Scott Dudgeon, Alzheimer Society Canada (left).

(l-r)Louise Bradley, CEO of the Mental Health Commission of Canada; Bev Heim-Myers, CEO Huntington Society Canada; Christina Vardanis, National Deputy Editor, The Globe and Mail; Joyce Gordon, CEO Parkinson Society Canada and Chair of the NHCC.

(l-r)Parkinson Society Canada CEO and NHCC Chair, Joyce Gordon and Holland Bloorview Kids Rehabilitation Hospital CEO, Sheila Jarvis with Ontario Minister of Health and Long-Term Care, Deb Matthews.

The Parkinson Society Canada Board of Directors has approved the funding of

• 1 Clinical Research Fellowship
• 1 Clinical Movement Disorders Fellowship
• 5 Graduate Student Awards

for the Autumn 2011-2013 cycle competition of PSC’s National Research Program. This represents an initial $300,000 commitment to research for the two-year period 2011-2013.

The adjudication of the Spring cycle competition for

• Pilot Project Grants
• New Investigator Awards
• Basic Research Fellowships

will be completed at the end of April. The results will be announced in August 2011.

To view current and previously funded research projects visit www.parkinson.ca