What is undeniable about life with Parkinson’s is that change and transition are the norm. And what we have learned is that those who are flexible and adaptable have the best outcomes in managing their disease. That life lesson is relevant to Parkinson Society Canada as we evolve and transform our organization to best serve the Parkinson’s community in Canada.
There is strength in unity. Through partnerships and alliances, we have become stronger in our ability to deliver on our mission as the national voice for Canadians with Parkinson’s. Throughout 2015, we have made positive strides through these trusted relationships with researchers in the scientific community, health care professionals, our pan-Canadian network of regional Parkinson Societies, and coalitions with champions who advocate for change. Recently, we updated you on Bill C-68, a good first step in bringing forward meaningful legislation on genetic fairness, though there was no commitment made by the government regarding regulating the insurance companies to ensure that disclosed genetic information cannot be misused to make unfair decisions regarding premiums and overall eligibility. We will continue to call on government to take appropriate steps to amend this.
Over the past five decades, we have been steadfast in our focus to hold people with Parkinson’s at the heart of all we do. We are grateful to our donors, supporters, volunteers and employees who enable us to bring hope by delivering world-class education, research, advocacy and supportive services and programs to individuals and families in communities coast to coast.
There are many ways to get involved in Canada’s Parkinson’s community whether you share your voice as a Parkinson Ambassador for the upcoming federal election, volunteer and fundraise for events like Parkinson SuperWalk or take an hour of your day to listen to a webinar on the latest developments in treatment in Parkinson’s. We recently invited you to participate in a survey for caregivers and we are sharing some news on the results in this issue. We also presented to nurses about the Canadian Guidelines on Parkinson’s Disease at the Canadian Association of Neuroscience Nurses at their annual conference and how this resource can help improve care for their Parkinson’s patients.
As Parkinson Society Canada celebrates the 50 year milestone in 2015, we will lead the way to strengthen community connections to best serve you while the quest for a cure continues.
Parkinson Society Canada (PSC), Alzheimer Society Canada and the Multiple Sclerosis Society of Canada are working together to develop a series of webinars specifically for caregivers supporting people living with any of the three neurological conditions. And who better to advise them of what would be most helpful to these caregivers, than the caregivers themselves.
“We recognize that the caregivers in our three communities have a lot in common,” says Grace Ferrari, Manager, Professional and Public Education at PSC. “And working in a partnership means we can make the most of our resources and our shared knowledge. Together, we can accomplish so much more than any of us can do on our own. We began this process by asking caregivers what information they needed and valued the most.”
Step one was a caregiver survey
An online caregiver survey, conducted between mid-March and the end of April, was developed and promoted by the three organizations to determine what information and topics were important and interesting to caregivers. We asked about priorities, navigating the health care system and other caregiver challenges and about 380 people completed the survey. Respondents were evenly distributed from among the three charities.
More than 55 per cent of responding caregivers are between the ages of 35 and 64, an age when many people are juggling the demands of multiple responsibilities, including working while caring for young children, and managing many other family demands. Respondents confirmed that loss of income can put a financial strain on their household. Caregivers are often forced to choose between being there for their loved one’s care or being the source of income for the family. These are some of the people for which Parkinson Society Canada has been advocating for extended compassionate care benefits. We also advocate with other partners, such as the Canadian Medical Association, for broader senior health care access and support within a National Seniors Strategy. And the survey confirmed that a large number of seniors are caring for seniors, reporting that sometimes they are feeling like they have given up their own retirement plans and dreams. Almost 40 per cent of the survey caregivers, or two out of five responders, were 65 or older and more than 70 per cent were caring for a spouse or partner. Three of every four caregivers surveyed are women.
The survey respondents were receptive to a webinar with more than 83 per cent indicating they would participate in a webinar offering caregiver resources and information. What topics did they think the webinar should address? The top four topics, in order, were:
Mental health and stress;
Finding support in the health and social services system;
Future care planning, and
Financial support and planning.
The respondents’ comments also offered a rich commentary on their lives and challenges as caregivers. “The caregiver role changes as neurological diseases progress. There is a delicate balance to care for someone and at the same time to help them maintain their independence,” says Ferrari. “As the caregiver, you have to keep adapting to the needs of your loved one, which usually steadily increase with the advancing stages of the disease.”
Step two: A “Think Tank” to distill and solidify the survey results
Nine people, two caregivers and one staff member from each organization, were guided by a facilitator for three hours, to further consider the survey results and identify the key topics for the caregiver education webinars, as well as offer other ideas for future partnership caregiver projects. A complementary “Think Tank” was held in French in Montreal.
“It was a very open and participatory session,” says John Parkhurst, care partner for his wife Margot Bartlett for 25 years, and Parkinson Society Canada representative at the meeting. “The struggles of caregivers are a huge problem that is often in the background and this needs to be addressed. Many have lost any sense of their own life and there can be so many unknowns. It can be very isolating. Having some options, some supports, even if you never access them, is important.”
Ferrari found some of the Think Tank sharing very moving. “The demands and uncertainty of caring for a person with neurological conditions puts caregivers under extreme stress,” she says. “Time, finances, navigating the system, other family and work demands and the need for respite were all openly discussed, and now we have a really well-defined set of priority topics for developing information sessions to meet caregiver needs.”
With the input from caregivers, the three health charity organizations will now develop three national webinars (two in English and one in French) to be delivered in the fall and winter of 2015-2016. These first few webinars will focus on caregiver mental health and navigating the health and social services systems. Webinars are a cost-effective way of delivering education nationally, without time or location restrictions. They do require a computer and internet connection to participate. Participants can listen to the speakers as well as view videos, slides or other content on a screen. The audience can ask questions in real-time through an instant messaging tool that is part of the webinar technology. The webinars will also be available as a recording for those who wish to access the session at a later date or time.
Other suggestions from the caregivers think tank included establishing an ongoing pan-Canadian caregiver advisory group and a newsletter specifically for caregivers. These, and other suggestions, will be considered by the participating partners.
Parkinson Society Canada is proud to partner with Canada Cares to recognize family and professional care givers. You may want to check out the Canada Cares website and nominate your favourite caregiver for a Canada Cares 2015 Award. Nominations must be received by September 18 and all the details can be found at www.canadacares.org.
It was an article about the late Wilder Penfield, a neurosurgery pioneer, that sparked a young Suneil Kalia’s quest to become a neurosurgeon three decades ago. “I was fascinated by the fact that the patient was awake while the doctor was operating on the brain,” says Dr. Kalia.
It would take 20 years of post-secondary education and training to reach his goals of becoming a neurosurgeon, a molecular biologist and now also a neuroscientist conducting his own research into the mysteries of Parkinson’s disease. After earning a BSc from McGill, he then graduated from the MD/PhD program at the University of Toronto (U of T). His neurosurgical residency training included a one-year, post-doctoral fellowship at Harvard University in the Mass General Institute for Neurodegenerative Disease (MIND). Today, Suneil Kalia is an assistant professor at U of T, a neuroscientist at Toronto Western Research Institute (TWRI) and a neurosurgeon at Toronto Western Hospital. He is also the recipient of a pilot project grant from Parkinson Society Canada’s National Research Program.
Dr. Kalia inspired hope among the audience who attended the special presentation on June 14th entitled: Parkinson’s disease – moving towards a cure. He gave context to the research and clinical work that has been done in the past, is currently underway and possible future innovations. Probably one of his most telling slides was a visual “map” indicating investigations into Parkinson’s that have been done during past decades. It was packed full with lines and touchpoints that gave the audience a glimpse into the complexities of Parkinson’s research.
On the surgical front Dr. Kalia spoke about deep brain stimulation (DBS) and of research into the development of smaller batteries, which may be placed under the scalp, rather than in the chest, or may even become part of the electrode which is inserted into the brain. And while current DBS therapy is “on” all the time, future iterations may self-adjust to brain stimuli and operate only as needed.
“And while we are able to treat the symptoms of Parkinson’s with current surgical and medical therapies, and make lifestyle recommendations to improve the quality of life for our patients, we are still not able to halt or slow the progression of the disease itself or reverse its effects,” said Dr. Kalia. It is in the field of molecular biology that he believes the route to a cure will be found.
His current research involves studying the causes of Parkinson’s disease – and in particular the proteins involved in the death of dopamine-producing brain cells. Kalia is focused on so-called “chaperone” proteins, particularly one called BAG5. This protein can accompany another protein called alpha-synuclein. Misfolded or misshaped clumps of alpha-synuclein can accumulate in dopamine-producing brain cells and cause them to die. Since these brain cells are critical to controlling movement, their death causes Parkinson’s disease.
Identifying the role of these chaperone proteins and their relationship to alpha-synuclein would go a long way to solving the puzzle of why the dopamine neurons die, Kalia believes. He thinks “bad” or malfunctioning chaperone proteins cause the alpha-synuclein to clump up in the brain cells. Knocking down these bad chaperone proteins might stop the aberrant process.
Using a type of gene therapy that delivers a virus to dopamine-producing neurons, Kalia hopes to eliminate the bad chaperone proteins and save the brain cells that are so critically involved in the motor symptoms of Parkinson’s disease.
“If we inhibit these molecules, we have the potential of stopping or reversing the degenerative process, and this could be a novel class of therapies for the disease,” Kalia says.
Dr. Kalia’s research into BAG5 is funded by PSC’s National Research Program. “The seed money granted by Parkinson Society Canada is critical to our work,” he says. “There is no doubt that the limiting factor in our progress is funding for research. The PSC grants make a world of difference in getting us started and in helping us apply for other grants.”
Dr. Kalia’s partner in work and life is Lorraine Kalia, a neurologist in the Movement Disorder Centre at the Toronto Western Hospital. She is also an assistant professor at U of T and a neuroscientist at TWRI and Tanz Centre for Research in Neurodegenerative Diseases (CRND). Lorraine Kalia offered clinical perspectives during the question and answer portion of the presentation. With adjoining labs, and complementary clinical practices, the Kalias are among Canada’s elite group of Parkinson’s specialists, dedicated to offering the best of care while advancing the way to a cure for this life-changing disease.
“I look forward to the day when I can tell people living with Parkinson’s that we can halt the progression of the disease and perhaps one day even reverse its effects,” says Suneil Kalia.
Don’t miss Dr. Naomi Visanji’s webinar on August on August 18, 2015, from noon to 1 p.m. EDT. Click here and pre-register to attend.
When Jim Long first agreed to help raise money for the Parkinson’s cause, he found himself at another volunteer’s house helping to arrange masses of tulips into bouquets. Then he and his fellow volunteers headed off to the streets of Toronto to sell these tulips in support of people living with Parkinson’s.
Things have certainly changed since those early days in the 1980s. “Just recently, with my 24 volunteers, we sold 72 boxes of tulips, and raised some $9,000 in a single day at Union Station,” says Jim.
The campaign has blossomed since those first years in Toronto. There are now 26 venues with blooms delivered directly from the growers; no more gatherings in homes to make up bouquets! There are logistics, promotion, and an army of volunteers to organize. As a member of the Hope in Bloom organizing committee, Jim’s executive skills truly shine. A retired housing developer, Jim helps staff and volunteers to grow and improve the campaign that takes place each spring. He’s very proud that the Toronto campaign raised more than $142,000 this year.
Jim has worked with a number of Parkinson Society staff over the years and has even participated in the interview process. He was on the committee when Helen Wong was hired as Community Development Coordinator (Toronto), responsible for the Hope in Bloom campaign. As a dedicated, respected, long-term volunteer, Jim is happy to help new staff and volunteers with their orientation by providing historical information and hands-on advice.
“Jim shared the history of the tulip campaign with me, along with his other knowledge and insights,” says Wong. “He’s been a very helpful guide to this aspect of my new position.”
Naseem Jamal, now Manager, Major & Planned Giving, Parkinson Society Central and Northern Ontario, worked with Jim for more than three years on the campaign, and echoes that sentiment. “Jim will just do whatever is needed. He is kind hearted and tenacious,” she says. “He helps train and assist new venue captains. He scopes out new sales sites and meets with property managers. He does whatever it takes to make life easier for the rest of us.”
No surprise then that Jim finds the toughest thing about volunteering with the organization is the desire to bring more immediate relief to those living with the disease. He remembers the challenges faced by his sister Pat, who was diagnosed with early onset Parkinson’s disease in 1972. “I took her to a Parkinson’s education presentation once. She was in a wheelchair by then, weaving and bobbing with dyskinesia and in pain. She was embarrassed being in public and at the end of the presentation, she asked me: ‘What are they doing for me?’”
Jim keeps his sister’s question in mind when he makes his contributions to the Hope in Bloom campaign. “The money we are raising is used for research for a cure and to give people with Parkinson’s and their families the information and support they need. We’re just doing it by selling tulips to raise the necessary funds.”
There is also something fundamentally satisfying about selling flowers in the spring. “We love the grey weather days,” says Jim. “There are more people coming by our indoor venues and the fresh, colourful blooms are hard to resist.” Jim remembers one customer who gathered up about 15 bouquets to distribute to people in his office. “We saw how pleased he was to be giving them out, and you could just imagine how happy the people would be who received a bouquet.”
Jim is also compelled to spread the springtime blooms around. By 1997 Pat resided at North York Senior Health Centre and Jim purchased several boxes of tulips himself and delivered them to the centre, as well as other senior centres in the area. He has continued to make these donations every year since. Sometimes the tulips provide a welcome touch of spring around the residences. And other times the centres sell some of them to raise funds to improve life for their residents.
“We all win,” says Jim. “The Parkinson Society gets the money I pay for the tulips and the senior centres and their residents enjoy the beauty of the flowers and raise funds for their own initiatives. We all help to increase awareness of Parkinson’s disease.”
At 84 years of age, Jim is concerned about recruiting future volunteers. He serves as a venue “Captain” for the campaign, usually working a day at Scotia Plaza downtown, as well as doing the organizing committee work. His daughter Julie and grandson Matthew have helped out on occasion. He likes to encourage others, young and older, to get involved and give back to society.
“For the young, volunteering is a great habit to embrace and it can be a wonderful family activity. For older and retired people, volunteering keeps them active and they can interact with all kinds of people.” says Jim. “This is my time to give back and make a difference.”