Message from the editor

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

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

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

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

Online registration is now open for Parkinson SuperWalk 2010.

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

We hope you enjoy this issue.

Marjie Zacks
Editor

Parkinson’s much more than a movement disorder

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

Dr. Mandar Jog, director of the Movement Disorders Program at the London Health Sciences Centre
Dr. Mandar Jog, director of the Movement Disorders Program at the London Health Sciences Centre
Dr. Ranjit Ranawaya, director of clinical services for the Movement Disorders Clinic at the University of Calgary
Dr. Ranjit Ranawaya, director of clinical services for the Movement Disorders Clinic at the University of Calgary

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

***

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

***

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

New in Parkinson’s research

Reducing brain inflammation in Parkinson’s

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

Gum chewing to improve swallowing function

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

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

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

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

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

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

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

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

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

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

The Donald Calne Lecture

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

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

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

Proud sponsor of the Donald Calne Lecture:

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

After the diagnosis

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

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

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

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

Consider Joining a Support Group
Consider joining a support group

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

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

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

We help families

general.info@parkinson.ca

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

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