Palliative Care in Parkinson’s

(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.
Sandy Sadler and her mother.

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

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.”

First Person: Choosing a career in neuroscience and Parkinson’s

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.

Firstperson_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 visitwww.parkinson.ca.

Global Parkinson’s Pledge

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.

Global Parkinson's PledgeWith 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

Kili Conquerors

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.

Stories from the Front: Taking one step at a time – a volunteer’s perspective

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.