Message from the editor

Welcome to the latest edition of E Parkinson Post!

We all know how important it is to maintain good relationships with our health care professionals, such as family physicians, specialists and physiotherapists. Whether it’s asking the right questions and getting reassuring answers or knowing how to get an appointment in a timely manner, it helps to know how to navigate the health care system.

This issue is devoted to improving communication with health care professionals. We asked both people with Parkinson’s and health care professionals for their best advice. Larry Peabody, a person with Parkinson’s and someone who has worked in health care, shares his perspective. You’ll also find tips from a neurologist, clinical nurse specialist and physiotherapist, all of whom have lots of experience with Parkinson’s disease.

We’ve also provided articles on other areas of interest and profile Dr. Ami Gupta, a young physician-scientist. Please visit us at www.parkinson.ca for more information.

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

We hope you enjoy.

Marjie Zacks
Editor

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Precursors to Parkinson’s disease

Research interest in pre-clinical markers for Parkinson’s disease is fuelled by the desire to identify one or more biomarkers that can be used to provide earlier diagnosis of Parkinson’s and new treatments to delay or even prevent the progression of the disease.

Depression can be an early symptom of Parkinson’s

“Years before being diagnosed with Parkinson’s, I began experiencing bouts of depression. I sought treatment and was hospitalized in 1995. I also had electroconvulsive therapy. I wasn’t diagnosed with Parkinson’s until December 1998. After I began taking Parkinson’s medication, I did notice some improvement in my mood. I haven’t experienced depression since.” ~Peggy Sturge, Newfoundland

Many people experience depression after being diagnosed with Parkinson’s. However, what’s less well-known is that, for some people, depression is one of the earliest symptoms of Parkinson’s, appearing even before the onset of motor symptoms.

“Depression can be part of the disease itself and not just a reaction to having a neurological disease,” says Dr. Susan Fox assistant professor of neurology at the University of Toronto and neurologist at the Movement Disorders Clinic at Toronto Western Hospital. “There’s a lot of evidence now that mood disorders are part of the biology of Parkinson’s disease.”

Dr. Fox explains that people with Parkinson’s lose norepinephrine and serotonin. These are neurotransmitters that are involved in mood, in general, as is dopamine.

She says, “Many patients, as they’re starting to lose their dopamine, may not have yet developed a tremor, slowness, or trouble walking, but they may feel anxious and depressed. Some have an inner sense of anxiety; they feel shaky inside. And when they start on medication, it’s often resolved. They report that they feel relaxed and calmer inside.”

Dr. Fox notes that, whatever the cause, depression is treatable, and people experiencing depression should seek help from their family doctor.

Are older antidepressants better for Parkinson’s depression?

A study, published in the March 10, 2009 online edition of Neurology, has shown that the tricyclic antidepressant, nortriptylene, may be more effective than the selective serotonin reuptake inhibitor (SSRI), paroxetine, for treating depression in people with Parkinson’s disease.

“The tricyclic antidepressants are an older style of medication that has gone out of favour largely due to side-effects, such as sleepiness; so SSRIs tend to be prescribed,” says Dr. Susan Fox, assistant professor of neurology at the University of Toronto and neurologist at the Movement Disorders Clinic, Toronto Western Hospital.

This study suggests, however, that the tricyclic class of medications may be more effective for depression in Parkinson’s. The tricyclics affect both norepinephrine and serotonin whereas the SSRIs target only the serotonin receptors in the brain.

With only 52 patients, this is the largest placebo-controlled study for Parkinson’s disease depression, to date.

Considering that depression affects up to 50% of people with Parkinson’s disease and negatively affects their quality of life, further research is needed, particularly larger clinical trials.

The study was led by Dr. Matthew Menza, a professor of psychiatry and neurology, at the Robert Wood Johnson Medical School in Piscataway, New Jersey.

REM sleep disorder a risk factor for Parkinson’s

A recent study by Dr. Ron Postuma of McGill University in Montreal has shown that people with REM sleep behaviour disorder risk developing Parkinson’s disease or dementia.

In REM sleep behaviour disorder, you violently act out your dreams – punching, kicking, crying out or throwing yourself out of bed. You may even injure yourself or your bed partner.

Dr. Postuma’s research, at the sleep disorders laboratory at Montreal’s Sacré-Coeur Hospital, studied 93 patients, who had been diagnosed with REM sleep behaviour disorder, and followed them for 5, 10 and 12 years for signs of neurodegenerative disease.

The average age of the participants was 65 years. Eighty per cent were men.

After 12 years, 26 of the 93 patients had developed a neurodegenerative disease:
• 14 developed Parkinson’s disease
• 1 had Multiple System Atrophy (a related Parkinson’s condition)
• 11 had dementia

Using life table analysis to define disease risk over 5, 10 and 12 years, the study estimated a
• 17% risk of developing neurodegenerative disease at 5 years
• 40% risk at 10 years
• 52% risk at 12 years

The study, published online in the journal, Neurology, in December 2008, is the largest study attempting to quantify the risk of developing neurodegenerative disease for people with REM sleep behaviour disorder.

Seeking smell test for Parkinson’s

“I noticed I was losing my sense of smell in the 1990s when I was still working as a food inspector. Smell is an important tool for detecting freshness of food; so I told my supervisor about my problem. I went to my doctor but he couldn’t find a reason for it. He referred me to a neurologist who recommended an MRI but also had no answers. At that time, I had no tremor, no sign of Parkinson’s at all. It wasn’t until fall of 2004, that I was diagnosed with Parkinson’s.”  ~Arnold Forsyth, Nova Scotia

Dr. Harry Robertson, a professor in the Brain Repair Centre and Department of Pharmacology, at Dalhousie University in Halifax, is seeking to find a diagnostic tool that can capitalize on the fact that a majority of people with Parkinson’s lose their sense of smell.

“The general consensus is that the changes in olfaction (ability to smell) occur about five years before the Parkinson’s diagnosis,” says Dr. Robertson. “If we could stop the process, that is, stop the loss of the neurons, we could stop people from ever developing the severe symptoms of PD. That’s the dream – to stop the Parkinson’s before it becomes disabling. I’m sure smell testing is going to be one component of that.”

In the first phase of his research, Dr. Robertson will try to identify smell deficits in about 20 people between the ages of 45 and 65 who have been recently diagnosed with Parkinson’s.

Using diffusion tension imaging (DTI), a special type of magnetic resource imaging (MRI), he will measure changes in two areas of the brain – the olfactory tract, which is the pathway for the sense of smell and the substantia nigra, where neurons degenerate in Parkinson’s.

In the second and larger phase of the study, Dr. Robertson will test olfactory function in up to 500 or more people who have not been diagnosed with Parkinson’s. Participants will be given a booklet of scratch and sniff pages and asked to sniff the pages and try to identify the smells. People with the lowest scores, indicating the most impaired sense of smell, will then undergo the brain imaging.

Research participants are needed from the Maritime Region

You may be eligible to participate in phase one of Dr. Robertson’s research, if:
• You have been recently diagnosed with Parkinson’s.
• You are between the ages of 45 and 65.
• You are otherwise in good physical health.

The study is being conducted at Capital Health and the IWK Health Centre in Halifax.

For more information, contact Dr. Harry Robertson, (902) 494-2563, har1@dal.ca.

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Navigating the healthcare system

By Larry Peabody

Larry PeabodyIn September 2002, my life changed forever. I was 53 years old and enjoying one of those peak experience times in my life. I had just celebrated my daughter’s wedding and returned to my position as senior consultant, Organization Development at the Calgary Health Region, having been seconded to Health Canada as director of the International Health Bureau for the 2002 Kananaskis G8 Summit.

A week later, I plummeted into a dark valley when I heard the neurologist say, “Parkinson’s syndrome,” after hearing the symptoms I had described only moments earlier. That was the day I began a new journey, as a patient, in the same healthcare system I was employed in.

I soon discovered that being a patient was not that different from being an employee, in that there were times when I felt frustrated and powerless in my attempts to make sense of this large, complex and often confusing system of “disconnects”.

During a brief stay in hospital a few months after my diagnosis, I was seen by the on-call neurologist. Since then, he has provided me with excellent care.

Although the healthcare system can be frustrating to navigate, it is becoming more open to innovation, as old ways of thinking and practising give way to new opportunities to improve how we can work together.

In October 2008, I attended one of the Parkinson’s Society of Southern Alberta’s Health Partnership Dialogue events: http://www.parkinsons-society.org/Events2008_HealthCare.aspx. Over 100 people with Parkinson’s disease, family members, friends, and caregivers shared their stories and, with a strengthened collective voice, identified common service gaps and made recommendations for improvements.

They raised issues and offered tips that resonate with my personal experience:

Access to information and psychosocial support at the time of diagnosis
Learning that you have Parkinson’s disease is a frightening and devastating experience that often leaves you in a state of shock and disbelief. Empower yourself by gleaning information from your family physician, local Parkinson Society or Public Health services, the library and web sites. Being informed gave me a sense of control at a time when everything seemed to be out of control.

Taking charge of the medical intervention plan
Choose to not let fear, frustration or denial keep you from getting the best services available to you. Denial initially cushions bad news but, if maintained, it prevents us from using the help we need to manage our Parkinson’s effectively. Be your own advocate or bring a trusted person along to appointments to be an additional listener and to help address issues on your behalf. You don’t have to go it alone, but do go as an informed person.

Clarification of the follow-up plan
Ask questions: What do I need to do? Who do I need to talk with? Where can I go for information and support? When and how often will I see you or another doctor? Write down the questions that are pertinent to you. Remember, there are no wrong questions, when speaking with health care providers. It’s your body and your life!

Getting the real help that YOU need
Don’t be afraid to ask for the specific supports you need. Being diagnosed with Parkinson’s is a life crisis that threatens your emotional stability and may bring to the surface issues that impede your ability to cope with the ongoing challenges. Seek out professionals who can address your emotional, social and spiritual needs. Find out how to access services 24/7 in the event of a crisis, such as, medication reactions, sudden behavioral or cognitive changes that may create anxiety for you and your caregivers.

The time immediately following my diagnosis was one of the most stressful periods in my life. I felt powerless over this disease that threatened to take my life away, piece by piece. I needed hope for my future. I needed to trust my healthcare system and the people it employed. For me, my hope and trust emerges out of my personal faith and the assurance that my family and I will receive the right support and information at the right time, at the right place.

Over time, I have come to realize that my greatest source for hope and trust comes from within. It comes from knowing that I have a responsibility for the effective management of my treatment for me and my family. And that I have a responsibility to speak out, on behalf of those whose voice has been quieted or taken away by Parkinson’s disease leaving them powerless to communicate their needs or concerns about their healthcare experiences.

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Physician-scientist committed to excellent patient care

Dr. Ami GuptaDr. Ami Gupta is young, bright and totally dedicated to making the patient experience a positive one.

At a glance

• Current status: Dr. Ami Gupta is halfway through the first year of a two-year clinical movement disorders fellowship at the Morton and Gloria Shulman Movement Disorders Centre at Toronto Western Hospital.

• Fast Facts: He has a medical degree from the University of Heidelberg, Germany, and a PhD in neurosciences from Harvard University. He recently completed his neurology residency at Johns Hopkins University.

• Achievements: He was awarded the Novartis Pharmaceuticals Canada Clinical Movement Disorders Fellowship in November 2008 through Parkinson Society Canada’s National Research Program.

• Quick quote: “The difference between a physician-scientist and a family doctor is that the physician-scientist not only thinks about issues that affect patients but also follows that up with research.”

Dr. Ami Gupta’s love of mysteries and keen appreciation of “the beauty of the brain” make him ideally suited to studying and treating movement disorders.

Dr. Gupta, 38, is a physician at the Movement Disorders Centre in Toronto, where he is developing specialized expertise in diagnosing and treating movement disorders, under the supervision of Dr. Anthony Lang.

He is also a scientist with a background in basic science research conducted in the lab.

Now, he is adding clinical research to his portfolio, embarking on two research projects:  one, looking at MRI-supported diagnosis in Multiple System Atrophy (MSA); the other, investigating cognition problems also in MSA, which is a disorder similar to Parkinson’s disease. It’s part of his bid to gain a deeper understanding of movement disorders and develop better ways to treat them.

In the few short months, since he began seeing patients at the Movement Disorders Centre, two days a week, Dr. Gupta has been surprised to learn that many of his Parkinson’s patients find their non-motor symptoms to be the most troublesome. “People tell me, ‘doctor, if you could help improve my sleep and my thinking that would be so much more potent than making me a little bit faster.’”

It’s an insight he may never have picked up had he continued working solely in the lab. His one-on-one relationship with patients has opened his eyes to new research possibilities.

“My perspective has become, what can I do to translate the knowledge I gain from research into something that can help Mr. or Mrs. Smith?”

When his clinical fellowship ends in June 2010, Dr. Gupta expects to carve out a career of continuing to provide excellent patient care. He’s just not sure yet whether he will combine his physician duties with clinical research or basic research.

Whatever his decision, it can only work to the benefit of his patients because, by then, he will have had the advantage of seeing what movement disorders look like in day-to-day life and he will have a vested interest in addressing the kinds of research questions that people with the lived experience of movement disorders want to have answered.

“Having trained in neurology and neuroscience, and worked at the interface of science and patient care, I will actually be able to do research based on what I have observed in the clinic.”

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