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 firstname.lastname@example.org.
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.
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.”
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.
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.”
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.”
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.”
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.”
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.
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
Jo Anne Watton, MSW
Chair, Canadian Coalition for Genetic Fairness
Director of Individual and Family Services, Huntington Society of Canada
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.