Archive for June, 2010

Editor’s message

Welcome to the summer edition of e-ParkinsonPost.

Continuing our 2010 theme of the Parkinson’s journey, this issue is devoted to living well with Parkinson’s. We look at how one family copes with the day-to-day realities of sharing the diagnosis, managing symptoms, navigating and nurturing relationships, making tough decisions.

Another article addresses whether or not to disclose the diagnosis at work, who to tell and how to tell. We also explore benefits and pitfalls of genetic testing and the potential for genetic discrimination.

Read our summary of Dr. Andres Lozano’s presentation at the Donald Calne Lecture to learn why location is as important in Parkinson’s as it is in real estate. Can alligators be walked on leashes? You’ll find out in our article on drum circles.

The Advocacy column brings you up to date on what Parkinson Society Canada and regional partners are doing to ensure that Canadians live well with Parkinson’s and how you can help.

We congratulate the first Early Bird Winner for Parkinson SuperWalk 2010. Online registration is open. If you haven’t registered yet, register now at www.parkinsonsuperwalk.ca.

Do you know of someone who has made a difference in your community? Why not nominate them for a Parkinson Society Canada National Volunteer Award?

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

Marjie Zacks

Living with Parkinson’s: the Oulton family

Over the 10 years since Douglas Oulton was diagnosed with Parkinson’s disease, if there’s one thing his family has learned, it is that Parkinson’s is a family disease. It has reached into nearly every aspect of their lives.

The Oulton family (left to right): Christian, Rebecca, Douglas, Pam, Sarah, and Nathan.

The Oulton family (left to right): Christian, Rebecca, Douglas, Pam, Sarah, and Nathan.

When Douglas was diagnosed with Parkinson’s disease on Valentine’s day in 2000, he was 44 years old. He and his wife Pam were raising four teenagers. He worked as vice president of finance for a manufacturing company. Life was good. Then Parkinson’s disease set the family on a path they never anticipated.

Before Douglas and Pam could break the news to their children, Douglas says, “We had to break it to ourselves first and find out what we were talking about.” A few days later, they shared the diagnosis with their two sons and two daughters, letting them know that, although there was nothing to stop Parkinson’s, medication would improve it for a while. Pam says, “We’ve always been an open family, so our children were the first ones we talked to about it. We kept it quiet except for immediate family.”

Work was a different matter. Douglas didn’t want people to think he couldn’t continue to do his job, so he didn’t say anything. However, maintaining his long work hours while managing his symptoms left him so drained that he says, “I would just come home, crawl into bed, get lots of rest and head back to work the next day. It took hours out of my home life and stopped me from doing a lot of the things I enjoyed doing around the house.” This lack of interaction at home didn’t sit well with Pam who says, “It kind of pissed me off.”

Managing symptoms

Medications also caused some strife. Some medications that enabled Douglas to work from early in the morning until late at night had the side-effects of increasing his anxiety level and making him so paranoid that it was more than Pam could bear. She eventually asked Douglas’ neurologist to take him off those medications which have since been taken off the market. Dealing with the side-effects of medications, particularly dyskinesia (involuntary movement) is an ongoing concern. Douglas has also had deep brain stimulation surgery which has helped restore some of his ability to smile and laugh.

Negotiating relationship

When asked if Parkinson’s has altered their relationship, Pam says, “We’ve always had a strong relationship but Parkinson’s has definitely challenged things.”

Communication has changed. It takes longer for Douglas to participate in conversation, responding to questions or expressing what he wants to say. He is also more sensitive to comments. Pam notes, “I can’t be flippant about what I say. I have to be accurate and careful about how I word things because I find Douglas is more emotional than he was before.”

Pam has also noticed an increased vulnerability. “There are times when I’m going out with friends and Douglas will say, ‘Are you going to come back?’ I think he’s worried sometimes that I am going to leave him because of what we’re going through. It’s difficult to try to deal with that.”

Douglas, on the other hand, says that Pam sometimes tiptoes around him too much. “She should be telling me what she’s feeling but she keeps it bottled up inside. She doesn’t want to hurt my feelings because she thinks I can’t deal with it and help her out.”

Changing roles

He views the change in their relationship as a change in roles. He had to leave his job five years after his diagnosis. Pam continues to work so that she can have a benefits package to help cover the cost of medications and funds for retirement. “The shoe is on the other foot now,” says Douglas. “When Pam comes home from work, she’s trying to wind down and my day doesn’t match up to hers. I was able to weed our flower garden for the first couple of years but now I can’t do that.”

Regarding social interactions, Douglas says, “I find it difficult that I’m more on the receiving end of people’s help than I am on the giving end. People can be very neighbourly but I would rather be the person helping out other people. I’m more comfortable with that.”

Making decisions

The strength of this community support is influencing one of the couple’s decisions – where to live. Should they stay in Sackville, NB, where Douglas serves on committees, attends church and choir practice, plays basketball twice a week, gets help carrying groceries home and phone calls when he has forgotten his wallet at the store? Or should they move to Halifax, NS, where three of their children live, where Douglas’s medical team is located and where Pam would like to work? “It’s a real dilemma,” says Pam. “Do I move someplace where I know I’d have more support or do we stay here where he has the support he needs?” The decision-making isn’t helped by the unpredictability of Parkinson’s. As Pam says, “There’s no timeline. No one can tell you it’s going to progress this way or that in three years’ time.”

Staying strong

How do they manage? Douglas says, “Stubbornness,” also his community connections, and, of course his wife and children. He says, “Parkinson’s can make your relationship stronger than it was before. Whenever I get down the person who picks me up is always my wife Pam. She’s the rock that grounds me.”

Pam adds, “The worst time is when we’re both down at the same time. It doesn’t happen often. Usually one of us can say to the other person, there are people who are worse off than we are. Move on. This is what we’re dealing with.”

Growing up with a parent with Parkinson’s

For their now-adult children, having a parent with Parkinson’s has been a rich source of life lessons. Daughter Rebecca says, in the early years, they didn’t see many symptoms so they didn’t know what impact Parkinson’s would have. Her parents encouraged her and her siblings to go to university even if meant having to leave New Brunswick. “They said, we can’t live our lives looking at what may happen, we have to live it based on what we know right now.”

After getting a graduate degree and working in Alberta, Rebecca has moved back to the Maritimes partly to be closer to home and to start her own financial services firm educating families about money and advising them that, “You have to take care so if something happens down the road, your family is going to be okay.”

She believes Parkinson’s has brought her closer to the family and given her strength and clarity about what is important in life. She half-jokes that, thanks to her parents’ example, she may have set the bar too high in relationships. “I see how Mom and Dad have stuck it out when so many families don’t. It has been hard for me to find someone with that same ethic of working things through, good and bad.”

Youngest son Nathan lives at home while finishing his university studies in biology and physics. When studying diseases, he has been able to put a face on some of the things his classmates read about in their textbooks. He is also the child who sees firsthand the disease progression in his dad – the problems with balance and short-term memory, the changed mannerisms and verbal expression. He says, “For me, the hard part is the unpredictability. Dad could be having one of his best days and by the end of the day it could turn into one of his worst. We just have to jump in with both feet and take each day as a new day.”

As he prepares to find his own way in the world, Nathan is philosophical about what it means to have a parent with Parkinson’s. “I’ve learned that you should cherish the good as long as you can because it does get harder as it goes along but if you have an ability to talk about it and have a sense of humour, that helps. It’s not something you can change so why not look at it in an optimistic way? Whatever is going to come is going to come so enjoy what you have while you have it.”

Stories from the Front

In this issue on living day to day with Parkinson’s, we invite you to hear firsthand from Canadians with Parkinson’s. Visit Stories from the Front on Parkinson Society Canada’s website.

Disclosing Parkinson’s to Employers

When working with Parkinson’s, you will likely face the issue of whether or not to disclose your diagnosis. This personal decision depends on your circumstances. If workplace safety is an issue or if you need your employer to change some aspect of your job to enable you to perform your job tasks, you may decide to disclose immediately. Otherwise, you may wait. In making your decision, consider what impact disclosure will have on your immediate and long-term goals. Whatever you decide, you should be as comfortable as you can with your decision.

Reasons to disclose:
• for peace of mind
• as a precaution
• to ask for job accommodation to meet your special needs
• to demonstrate that Parkinson’s does not interfere with your ability to do your job

Reasons not to disclose:
• fear of discrimination or stigma
• concern that your employer will focus on Parkinson’s rather than your work performance
• you do not need special accommodation to continue to do your job
• to maintain your privacy

Your Rights
You are not legally required to mention your diagnosis to your employer as long as you can adequately perform your work.

Accommodation
If you need workplace accommodation (changes that will enable you to do your job), you will have to disclose to your employer that you have a disability and describe your limitations in carrying out your job. The best time for disclosure is before a crisis occurs, preferably when you are not under stress.

Your employer may ask for a letter from your doctor confirming your need for accommodation and requesting information about suitable accommodation. Your doctor should provide only the medical information your employer needs to know to help you get workplace accommodation.

As long as your employer is aware of your disability or diagnosis and understands what you need to be accommodated, your employer is obligated by law to accommodate you.

Who to tell
If you are requesting job accommodation you will have to tell your employer. In that context, you have a right to discuss with your employer how much information about your disability, if any, is to be shared with co-workers.

Otherwise, you decide who you want to tell. You may prefer that few people in your workplace know or that everyone you work with is aware. Keep in mind that others may be noticing your symptoms and drawing the wrong conclusions. Disclosure can be a way of taking back control.

What to tell
Determine how much information you are comfortable with disclosing, whether that is the actual diagnosis or just the symptoms that are visible or affect your work.

Telling your employer:
• Have a plan. Anticipate concerns your employer may have and be prepared to address them.
• Say why you have decided to disclose your disability or diagnosis.
• Stay positive. Focus on your skills and qualifications not your limitations.
• If you request job accommodation, mention only the symptoms that interfere with your work.
• Identify and explain any workplace accommodations you may need.
• Discuss options such as adaptive equipment/technology or flexible work hours.
• If necessary, seek legal advice to understand better your rights and obligations.

Read Employment Issues for more information and strategies for working with Parkinson’s.

* Adapted from information produced by Parkinson Society British Columbia in collaboration with the law firm of Blake, Cassels & Graydon LLP (PDF)

Ask the Expert

Genetic Discrimination: Beware

Genetic testing is opening a world of knowledge, with over 1500 genetic tests now available and hundreds of genetics and genomic studies underway. The potential for people to learn about their disease susceptibilities, improve their treatment decision-making, avoid exposure to unnecessary interventions, improve health outcomes and make informed life planning decisions is growing daily. In the near future, consumers will be able to obtain a personal genome scan and more detailed genetic risk information; however, there is a downside. Once you have obtained your genetic information, who else can access it and what will they do with your information? We have asked two experts to discuss issues surrounding genetic discrimination and the privacy of genetic information.

Yvonne Bombard, PhD
Researcher, University of Toronto, Faculty of Medicine
and Canadian Coalition for Genetic Fairness

Yvonne Bombard

Yvonne Bombard

Jo Anne Watton, MSW
Chair, Canadian Coalition for Genetic Fairness
Director of Individual and Family Services, Huntington Society of Canada

Jo Anne Watton

Jo Anne Watton

What is genetic discrimination?

“Genetic discrimination is the use of genetic information – whether it is perceived or actual – against a person,” says Yvonne Bombard, a researcher in the University of Toronto’s Faculty of Medicine. “This could be information concerning whether you are at risk for a certain genetic disease or information from a genetic test that shows you do or do not carry a mutation that would predispose you to developing that disease or disability in the future. Genetic information could expand broadly to include family history information or it could be narrow in scope and just encompass things such as DNA-based information, chromosomal-based information, or information from similar sorts of tests.”

Is genetic discrimination happening in Canada?

In a study of Canadians at risk for Huntington disease, published in the British Medical Journal in June 2009, nearly 40% of respondents reported to have experienced discrimination. Lead author of the study, Bombard notes, “Life and disability insurance companies were the main source of discrimination, with 29% of respondents reporting that their application for coverage was rejected, their premiums were increased, or they were asked to take a predictive test before they could obtain insurance coverage or move forward with their application. Just under 7% reported employment-based discrimination.”

Members of the Canadian Coalition for Genetic Fairness, which represents many conditions, including Parkinson’s, also report anecdotal evidence that discrimination is occurring in Canada.

Why do we need protection against genetic discrimination?

The amount of genetic information collected and stored in publicly funded biobanks is growing exponentially. There is concern that, without protection, this information could be used outside of the context of health care and medical research, possibly by insurance companies or employers who might use or misuse the information. “Considering how rapidly genetic screening technology is progressing, it is important to have protection around genetic discrimination for Canadians,” says Bombard.

Fear of genetic discrimination is preventing positive uses of genetic information. It is preventing people from participating in research. “This slowing of the research agenda is a huge concern,” says Jo Anne Watton, Chair of the Canadian Coalition for Genetic Fairness and Director of Individual and Family Services, Huntington Society of Canada. “In diseases such as Parkinson’s disease, we need everybody on deck to know their genetic status and participate in research so we can move forward and get effective drugs and treatments. However, if people are afraid to come forward then that’s just one more barrier.”

What protection is currently available in Canada?

In Canada, there are no policies or laws in place that specifically include genetics as a “prohibited ground” for discrimination. In documents such as the Canadian Charter of Rights and Freedoms, the Canadian Human Rights Act and Personal Information Protection Electronic Documents Act, genetics may be interpreted or captured under the scope of disabilities. However, even under disabilities, these documents do not address the concept of future disability or perceived disability, nor do they prevent discrimination from taking place. They offer remedies after the discrimination has occurred, which puts the onus on the victim of discrimination to make the complaint and seek appropriate legal action which is frequently a lengthy and expensive process.

How does Canada compare with other countries?

The Canadian Coalition for Genetic Fairness, of which Parkinson Society Canada is a member, has noted that Canada is lagging behind other countries and international organizations. The Council of Europe’s Convention on Human Rights and Biomedicine explicitly prohibits genetic discrimination. In 2008, the United States passed the Genetic Information Nondiscrimination Act (GINA) which protects Americans from discrimination in health insurance and employment. This includes genetic services (genetic tests, genetic counselling, or genetic education) received by an individual or family member participating in clinical research. Protection under GINA does not extend to people who are outside of the US and avail themselves of recreational genomics testing by US-based direct-to-consumer genetic testing companies that sell their services over the Internet. Canadians who participate in direct-to-consumer testing may not be aware that there is no protection.

In this age of the Internet, social media and increasing knowledge about a genetic component in many diseases, is it possible that genetic privacy concerns may be overrated?

“Some people are nervous about how their information is going to be used; others are quite open,” says Bombard. “There is a personal orientation to these risks but there may also be risks to other members of the family.”

Watton raises the question of ownership. “If I buy a genetic test kit, who owns my genetic information? That’s rich data that I want to be in the hands of people who are going to do good work with it, if that’s something I want to participate in, but who owns that data?”

What is being done to help prevent genetic discrimination?

Private Members’ Bill C-536, which was introduced in the House of Commons in April 2010, calls for an amendment to the Canadian Human Rights Act to protect Canadians from discrimination on the basis of their genetic characteristics. The Coalition supports this motion and the Parkinson’s community is encouraged to get involved. To learn more, read the Call for Federal Action on Genetic Discrimination on Parkinson’s Society Canada’s website.

As well, Parkinson Society Canada has participated in a series of public policy workshops hosted by Genome Canada addressing genetic discrimination. Among the policy options being explored are: strengthening existing human rights laws; strengthening existing data protection laws; the introduction of a comprehensive regulatory framework; and sector-specific solutions in the context of insurance. To learn more about the series, read the background materials and view the podcasts, visit Genome Canada’s GE3LS web page and click on Policy Portal.


UPDATE: On June 10, 2010, the US Food and Drug Administration sent regulatory letters to five direct-to-consumer genetic testing companies requesting that they obtain FDA approval or clearance for their tests. The companies are: 23andMe, deCODE Genetics, Illumina Inc., Navigenics and Knome.

Donald Calne Lecture

Dr. Ted Fon, Chair, Parkinson Society Canada’s Scientific Advisory Board and Chair, Donald Calne Selection Committee presents Dr. Andres Lozano with the Donald Calne Award in Ottawa.

Dr. Ted Fon (left), Chair, Parkinson Society Canada’s Scientific Advisory Board and Chair, Donald Calne Selection Committee presents Dr. Andres Lozano with the Donald Calne Award in Ottawa.

Location, location, location critical in Parkinson’s disease

Dr. Andres Lozano, distinguished neurosurgeon, professor and RR Tasker Chair in Functional Neurosurgery at the University of Toronto addressed over 120 attendees at the Donald Calne Lecture hosted by Parkinson Society Canada and Parkinson Society Ottawa, on Sunday, May 16th in Ottawa at the Fairmont Chateau Laurier.

Dr. Lozano, who was the first surgeon in North America to perform deep brain stimulation (DBS) surgery, brought his audience up to date on advances in DBS, the breakthrough surgery that has improved quality of life for many people with Parkinson’s. He also provided an overview of novel surgical approaches being tried, including: transplantation of dopamine-producing cells into the brain; stem cell therapy; gene therapy and trophic factors therapy. He said that, even more experimentally, researchers are looking into spinal cord stimulation and using new techniques such as shining a special light into the brain to activate or silence neurons.

Noting the absence of treatments that will slow Parkinson’s disease or stop it, Lozano said there is an urgent need to develop therapies that can put the brakes on the disease. “As neurosurgeons we are interested in seeking out misbehaving cells by mapping the brain and looking for them. Just as in real estate, the three most important things are location, location, location,” said Lozano. “We spend a lot of time figuring out where to go and getting individual neurons to reveal their secrets to us.”

“As we travel from one site to another, we are able to stop and listen to the language of the brain and we are able to see that the neurons fire with different patterns. Just as when you travel from country to country in Europe, going from Spain to Portugal, from France to Italy, over the course of time, we can tell where we are and we can understand the language of the brain, making surgery safer and more successful,” he added.

Attending the Donald Calne Lecture in Ottawa are (left to right): Dr. Ted Fon, Chair, Parkinson Society Canada’s Scientific Advisory Board and Chair, Donald Calne Lecture Selection Committee; Bruce Ireland, Chair, Parkinson Society Canada Board of Directors; Dennise Taylor-Gilhen, Executive Director, Parkinson Society Ottawa; Dr. Andres Lozano, recipient, Donald Calne Lecture; W. P. Bruce Good, Vice President, Partnerships and Communications, Rx&D, sponsor of the event; Joyce Gordon, President & CEO, Parkinson Society Canada.

Attending the Donald Calne Lecture in Ottawa are (left to right): Dr. Ted Fon, Chair, Parkinson Society Canada’s Scientific Advisory Board and Chair, Donald Calne Lecture Selection Committee; Bruce Ireland, Chair, Parkinson Society Canada Board of Directors; Dennise Taylor-Gilhen, Executive Director, Parkinson Society Ottawa; Dr. Andres Lozano, recipient, Donald Calne Lecture; W. P. Bruce Good, Vice President, Partnerships and Communications, Rx&D, sponsor of the event; Joyce Gordon, President & CEO, Parkinson Society Canada.

Every time a tremor cell fires in the brain, it causes a tremor. If neuroscientists can put an electrode in the middle of the brain and turn on electricity through the electrode in the cells in the brain, they can control the tremor. Lozano noted more research is needed into this and other aspects of Parkinson’s. “We’ve become good at treating tremor, rigidity and slow movement. We’re not good at treating the non-motor aspects of Parkinson’s, such as depression, posture, cognition, sleep, olfaction (sense of smell), sexual dysfunction and speech.” These are areas for future investigation.

Our thanks to Rx&D who sponsored this year’s Donald Calne Lecture.

Rx&D

The Donald Calne Lecture was recorded and is available on Parkinson Society Canada’s website.

Become an advocate for living well with Parkinson’s

Yvon TrepanierYvon Trepanier,
Chair, National Advocacy Committee

Painting a picture of what it means to live well with Parkinson’s is at the heart of everything we do on the national advocacy committee. After all, how else would our elected representatives and policy makers begin to understand the many ways that Parkinson’s affects quality of life – not just the health effects but the social, economic and other impacts – and the need for input and support from a wide range of government ministries and departments? Together we are making progress in effecting change… but there is much more to do.

On the federal front, Parkinson Society Canada is one of the lead organizations asking the federal government to support the development of a National Brain Strategy and to protect the privacy of genetic information. We are generating support for several private members’ motions and bills that address issues of importance to the Canadian Parkinson’s community. We are also calling for accelerated and increased investment in both Parkinson’s-specific research and broad-based neuroscience research. After successfully leading the effort to garner government support for a national epidemiological study, Parkinson Society Canada is now serving as a member of the implementation committee for the four-year National Population Health Study of Neurological Conditions.

At the provincial level:
Parkinson Society British Columbia is a member of the Better PharmaCare Coalition which is lobbying the BC government for better BC PharmaCare program coverage for evidence-based prescription medications and health products.
Parkinson Society Manitoba supported former MP, Judy Wasylicia-Leis’s introduction of a bill in Parliament to prohibit discrimination on the grounds of a person’s genetic characteristics. It also updated the provincial NDP caucus on the new statistics showing that as many as 6,000 Manitobans have been diagnosed with Parkinson’s. Previous estimates stood at 3,500.
• Our regional partners in Ontario are bringing to the attention of policy makers the role of speech language pathology services in enabling such basic functions as swallowing and communicating. They are also partnering with other health charities in working with the Ontario government to develop a provincial Brain Strategy.

These are just some of the ways we are advocating for improved quality of life for Canadians living with Parkinson’s, families and care partners.

You can do your part. It only takes one person to get the ball rolling. Write your elected officials or arrange to meet with them on a regular basis. Outline some of the key issues that Canadians with Parkinson’s have identified as being important. Share your own story as a way of helping officials appreciate the challenges that people with Parkinson’s and families face. Mention the need for public education and awareness programs to reduce stigma and end social isolation. In parting, let your officials know they can contact you, in future, for more information.

Visit the Parkinson Society Canada Advocacy Centre for background materials and template letters that will help you communicate with your federal elected officials. There is work to be done. Let’s do it!


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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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