You’ve been heard – thank you!

ApomorphineEarlier this summer, we put a call out to the Parkinson’s community across Canada to have your say about apomorphine (brand name Movapo®) and treatment options for people with Parkinson’s.

Thanks to your timely and meaningful input, we were able to prepare a patient evidence submission to CADTH, the Canadian Agency for Drugs and Technologies in Health.

We will keep you informed as any major milestones are reached. If you wish to follow the progress of this review now that together we completed the first important step, visit the CADTH website page that outlines the next steps in this review process: https://www.cadth.ca/apomorphine

The final recommendation is expected early in January 2018. If there is a positive recommendation, further processes will need to get underway before public coverage is made available. We will be sure to keep you informed.

We are grateful for your input and we are here if you have any follow-up questions. Contact Jacquie.Micallef@parkinson.ca.

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Help, I need somebody

Sandie and Robert
Sandie and Robert

You just found out your Dad has Parkinson’s and the whole family is in a panic. Who do you turn to? Your doctor just wrote you a prescription for a new Parkinson’s drug. You can’t remember the side effects to watch out for. Who can fill you in? Or, you just read about a miracle cure for Parkinson’s on the Internet? How can you find out if this information is for real?

For these, and so many other questions and concerns related to living with Parkinson’s, Parkinson Canada offers Information and Referral as one of many core services available across the country. Individuals can call 1-800 – 565-3000 or contact us by email at info@parkinson.ca. In 2016, the organization received more than 9000 contacts for help. Sandie Jones and Robert TerSteege are two members of a Canada-wide team that includes information and referral associates and community development coordinators, who provides confidential, one-on-one service to thousands of families. And these professionals have heard it all, retaining their kind and caring interest, along with a great depth of expertise, honed over time.  “We just want to help,” says Sandie.

Helping others seems to be part of their DNA. Both Sandie and Robert have always worked in the helping professions; Sandie started her career as a mental health nurse, and Robert working with people with disabilities. Long-term employees with Parkinson Canada, they have seen demand for their services grow, new treatments emerge, and an increasingly complex health and social services system grow around Parkinson’s care.

Sandie has been helping people living with Parkinson’s and their care partners for almost 20 years now. “I remember in my early nursing years when there was no treatment for Parkinson’s at all. I had an aunt that took part in the first clinical trials for Levodopa.” Her aunt had been basically immobile, and finally was able to sit up and speak, when taking Levodopa. “It reminds me of how far we have come and that there is hope for the future and I share those thoughts with clients.”

People living with Parkinson’s and their families most often need information and support when they are first diagnosed and when, or if, living at home is no longer an option. “Some people remember when Parkinson’s was such a cruel, painful and difficult disease, with no available treatment. Maybe they knew someone with the disease back then, and are terrified,” says Sandie.

You may remember what it’s like to leave the neurologist’s office after hearing the words, “You have Parkinson’s.”  You likely didn’t hear anything beyond those words.  After the shock subsides, you’ll want to know so much more: about symptoms and medications, other treatments, how your life will be affected; the feelings can be overwhelming. Friends and family want to know how best to support you. Whether you speak to Ryan in Atlantic Canada, Danielle in Quebec, Donna or Jennifer out west, like Robert and Sandie, they are all trained and qualified to explain things in a way that is relatable to you and your situation.

“It’s not always easy to understand or absorb information about Parkinson’s,” says Robert, whether from your doctor or in written materials. After all, we are talking about brain chemistry. It is a complex disease!”

Often callers simply feel less alone, when they can speak to someone who is empathetic, and outside of the family. “They feel validated when they learn that others are experiencing the same symptoms and feelings,” says Robert.

For instance one gentleman called because his wife insisted he do so, explains Robert. He had been experiencing depression and anxiety. When Robert spoke to him about how this is a very common symptom of the disease, and not a character flaw, he was much more receptive to talking to his doctor about getting treatment for these symptoms.  Both he and his wife were much relieved.

Many people also deal with issues of employment, caregiving, insurance, taxes, or assistive devices.  They may not know what sources of support are out there, as well as what programs they may be entitled to access.  “By getting a clear picture of what a person needs,” says Robert, “we can often direct a person to the available services in the community, including Parkinson Canada support groups and programs.”

With the amount of information sharing available through the Internet, many people also contact Parkinson Canada about claims on complementary therapies, breakthroughs reported in the news, and other things they have discovered online.  Parkinson Canada will not endorse any specific product, service or enterprise.  “We take pride in sharing credible information,” says Robert. “If we do not have an answer, we will do our best to source reputable information, so that people can make informed decisions for themselves.”

Probably the toughest conversations occur when the disease has progressed. During later stages, there are fewer benefits from medications. This is the time when families may consider other treatment options, and plan for outside help or a move from home. “Care partners and the person with Parkinson’s may feel like a failure, when they can no longer cope,” say Robert and Sandie. Parkinson Canada staff can help these individuals explore their options so they can make informed decisions and suitable plans.

Tips to getting the most out of your contact with our services

No matter why you contact Parkinson Canada, there are things you can do to help us help you.

  1. Be honest. It can be difficult for some people to discuss what they have been taught are taboo subjects such as bodily functions or sex. But, the more honest and specific you can be about your concern or questions, the more likely you are to get a satisfactory answer.
  2. If you call and get a voicemail recording, do leave a message. You will get called back; often we are helping someone just like you.
  3. When you speak to an associate, or leave a message, try to do so from a quiet place – without background noises like other conversations, the radio or TV. Speak as slowly and clearly as you can. Do not call from a cell phone while driving in your car.
  4. Have paper and a pen on hand to write things down.
  5. If you have questions about your medications, know the name of the medication, the dosage and the times you take it.
  6. Be prepared to have a meaningful conversation.

You may find these other resources helpful too

  1. Find out more about support groups and programs in your community here.
  2. Check out our Knowledge Network of webinars and podcasts here.

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Exercise to change the brain

Dr. Marc Roig
Dr. Marc Roig

For someone with Parkinson’s disease, the simple desire to grasp a glass of water can become an insurmountable task, made impossible by the tremors in their hand or arm. Finding strategies to improve these movement impairments is one of the major goals of rehabilitating people with Parkinson’s disease.

At McGill University, Marc Roig, an assistant professor in the School of Physical and Occupational Therapy, is studying the effects of using high-intensity exercise to stimulate the brain’s ability to learn and change with repeated experiences. His research is being funded with a $44,907 Pilot Project Grant from the Parkinson Canada Research Program.

Roig and his team are working with people who have Parkinson’s disease, to see if they can improve their ability to move and to complete tasks like grabbing an object. The team is using high-intensity cardiovascular exercise to provoke changes in the brain that make it easier to train itself to relearn motor tasks.

“One of the main problems with people with Parkinson’s is they lose their ability to do very simple motor tasks,” says Roig, a neuroscientist. “We want to understand why this happens and try to find interventions to improve that.”

Roig believes exercise may be the key to triggering the brain’s ability to change and to open a window to improve motor learning. He will use Transcranial Magnetic Stimulation (TMS), a form of non-invasive brain imaging that moves a magnetic coil over the skull, to map the areas of the brain he wants to measure. By attaching electrodes to the muscles of the hand and then moving the magnetic coil until the fingers move, his team will be able to map the changes in the brain that occur before and after intense exercise, and to record changes in the brain activity of people with Parkinson’s who are on medication and those who are not on medication.

After they exercise, the people enrolled in Roig’s study will also have to complete a task involving the application of force in a computer game, to measure whether the exercise and the burst of brain chemicals it stimulates also improves their motor ability.

Most people with Parkinson’s disease eventually take a synthetic form of dopamine, called levodopa, to replace the levels of this brain signalling chemical that Parkinson’s depletes. Roig is also testing his theory that the people with Parkinson’s will need their medication to take advantage of the improvements exercise can produce.

“With the new information, we can better understand how exercise interacts with dopamine and with motor learning,” Roig says.

His goal is to use that information to create new interventions during rehabilitation, and to explore the response of different areas of the brain.

“The final goal is to try to improve the quality of life of these people, but to do that you need to understand the mechanisms of the disease,” Roig says.

Eventually, his work may lead to new techniques and new rehabilitative interventions that can help people with Parkinson’s use exercise to train their brains to complete the simple tasks of everyday life that come so easily to others without this disease.

Read about other researchers recently funded by the Parkinson Canada Research Program by visiting the research section of www.parkinson.ca.

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Do something grand this Grandparents’ Day

Paul and Barbara Kent with family members at Parkinson SuperWalk 2016.
Paul Kent with family members at Parkinson SuperWalk 2016.

On September 10, 2017, Canadians will celebrate National Grandparents’ Day. Parkinson Canada invites families to honour their grandparents by signing up today for Parkinson SuperWalk.  Now in its 27th year, the grand event takes place in communities across Canada on Saturday, September 9 and Sunday, September 10.

“You and your family can become everyday heroes inspiring hope for other families living with Parkinson’s,” says Jon Collins, Associate Director, Events & Partnerships, Parkinson Canada. “It’s a fun way for family members of all ages to spend time together in a relaxed setting, celebrating Grandparents’ Day, and raising funds and awareness for a special cause.”

Grandparents Paul and Barbara Kent from Dartmouth agree. They’ve taken part in Parkinson SuperWalk in Halifax, Nova Scotia, for seven years now. Paul was diagnosed at age 55 with corticobasal ganglionic degeneration (CBD) an atypical Parkinson disorder. And brother-in-law Bob Shaw’s wife also lives with Parkinson’s. “There are two of us in our family living with the disease, but everyone in our extended family is affected and involved in supporting this cause,” says Paul.

The Kents have two grown daughters Julia, 29, and Jessica 26. Julia’s toddler son Jordan and husband Jason will walk with the Kent Supporters team, captained by Paul. Julia will join them if she is able; she is expecting her second child this fall. Jessica will also join the family team for SuperWalk, along with other friends and family members.

Bob Shaw, Managing Director, Parkinson Canada, Atlantic Canada, and his wife put together their own team and there is a friendly fundraising competition between the family teams. Last year, the Kent Supporters raised $7,500 for Parkinson Canada, just behind Bob’s team. “It would be great to beat them this year,” says Paul.

Everyone pitches in raising money for the team, and son-in-law Jason asks many of his work contacts for their support, says Paul.

Paul’s CBD first appeared as pain in one arm, gradually developing into a tremor, with the pain persisting to this day. He also began to notice cognitive changes and setting priorities became challenging. He left his CEO position at the end of 2014. He also experiences anxiety. While levodopa does not benefit all people with CBD, it does help Paul somewhat and he takes four levodopa pills a day and a muscle relaxant at night to help him sleep. He takes medication for his anxiety. And every 120 days, he receives a series of Botox injections at several body points to help with his condition.

So far, Paul does not have trouble walking. Barbara notes that it is curious that her husband can climb stairs two at a time, yet cannot speak on the phone when he’s holding the receiver. He can talk on the phone easily when using the speaker function. Changing temperatures, stress and fatigue all impact his days. On a recent extended cruise in the Mediterranean, the temperate weather and relaxing atmosphere meant the couple enjoyed the ship’s entertainment and dancing almost every evening.

Although Paul lives with almost constant pain, and struggles with simple tasks like dressing and eating, “he rarely complains,” says Barbara. “I know the time will come when he’ll need my help more often, and others have told me that he’ll appreciate my help as it becomes more necessary. For now, I wait for him to ask for it. That can be difficult.”

“It’s wonderful for us to have family and friends take part in SuperWalk with us, knowing they are supporting Paul and me too, as his wife,” says Barbara.

Every hour, of every day, another Canadian hears the words: “You have Parkinson’s disease.” For people newly diagnosed, Parkinson SuperWalk is a great opportunity to meet others living with the disease and their families and to begin to build a supportive network. It’s a very hopeful event with people living with the disease participating. Funds raised are invested in communities across Canada to provide services, education and advocacy to support people affected by Parkinson’s. Funds raised are also invested in the Parkinson Canada Research Program, so that researchers can identify pathways to improve treatments and find a cure.

You and your family can join Paul and Barbara and their extended family and become an everyday hero, inspiring hope for Canadians living with Parkinson’s, as well as their families and caregivers. Make your grandparents proud and register today for a fun, family outing with a special purpose. Or contact Parkinson Canada at 1-800-565-3000 for details about a Parkinson SuperWalk location near you.

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How to “Fundraise Your Way”

Rebecca Enns with her father Jim Peters and her sons Titus and Theo.
Rebecca Enns with her father Jim Peters and her sons Titus and Theo.

Six-year-old Theo Enns can’t wait to host his own “Little Chips for Parkinson’s” event when 12 of his young friends will fundraise and play a round of mini-golf at the Golf Dome in Winnipeg this September, in honour of his grandfathers  Jim Peters and Rudy Enns, who both live with Parkinson’s.

His mother Rebecca Enns came up with the idea, when Theo expressed an interest in the “Chipping In for Parkinson’s,” nine-hole, best ball golf tournament she and her father have hosted the last two years to raise funds and awareness of Parkinson’s disease.

Theo wanted to attend the evening event, but it extended well past his bedtime. When he asked his mother if he could have his own tournament, she came up with the “Little Chips” plan. Theo and his younger brother Titus will take part in and fundraise for the event, along with their young friends. “We hope all the children have a good time,” says Enns. “If it goes well, we may look to expand the event next year.”

“Chipping In for Parkinson’s” – the adult version – raised more than $12,000 last year and more than $20,000 this year. Despite dreary weather, more than 70 golfers came out to support Jim and the local Parkinson’s community. “Not a single person complained. They all just told me how thrilled they were to be there to support us,” says Enns.

“It’s so rewarding to see your friends and family, and even people you don‘t know, give you their support,” says Enns. The biggest reward, she says, would be a cure for Parkinson’s. Both her father and her father-in-law live with the disease. “In the meantime, we’re helping to provide more resources to those who are being diagnosed.”

Enns also credits Parkinson Canada staff in the Winnipeg and Toronto offices, with helping her to promote her event and advising her along the way.

Alexis Farrell serves the ball at Volley for Johnny.
Alexis Farrell serves the ball at “Volley for Johnny.”

Alexis Farrell of Barrie, Ontario, says her Parkinson Canada Community Development Coordinator Anne McNamara has been “amazing,” helping out with sponsors, registration and contacts for her “Volley for Johnny” beach volleyball event the past two years. “She even walked me through getting a city permit,” says Alexis. She connected with McNamara after contacting Parkinson Canada through its website.

Last month, 120 people participated in “Volley for Johnny,” raising about $6,300 and last year, they raised about $5,500. Teams of six to eight players, paid $200 per team to play in a well-organized beach volleyball tournament. Sponsors added to the total by supplying coffee and donuts (Tim Horton’s); gift cards for snacks and drinks (Metro Grocery) and pizzas for half price (PIE Wood Fired Pizza.) The local CTV station also covered the event on its news cast, providing more awareness of Parkinson’s.

“I was so surprised that everyone said yes to helping out. All I had to do was ask,” says Farrell, who is inspired by her father Johnny Farrell, who has lived with Parkinson’s for eight years.

“If you choose an activity you love, and you’re passionate about a cause; it makes all the hard work worth it,” says Nathaniel Bendahan, who started up “Playing for Parkinson’s,” a tennis tournament in Gohier Park in Saint Laurent, just outside Montreal.

Bendahan just launched his fifth, six-day tournament since 2012. This year the tournament runs from July 14 to 16 and July 21 to 23. He hopes his father Jacques, who was diagnosed with Parkinson’s  more than 20 years ago, at age 48, can make it to watch the finals.

“I was only two years old when my father was diagnosed, so I’ve seen how the disease has affected his life, as well as my mother and my sister and I,” says Bendahan, who is now studying neurology at Queen’s University.

My Dad was actually able to play in the tournament two years ago, he says. This year he hopes his father can watch the final match. The tournament has grown from 40 to 65 players, with each player paying a $20 registration fee.  And some people make additional donations. Each year, they’ve raised between $1,000 and $1,500.

Yanni Lambropoulos, Nathaniel’s main connection to the tennis community, has taken on a big part of organizing the event, including securing city permits and making calls. “We’ve had some nationally ranked players take part,” says Bendahan proudly.

This year, staff from the Parkinson Canada in Quebec office in Montreal attended the tournament opening and helped out by supplying pamphlets and lending support. “I’ve always looked to Parkinson Canada for assistance,” says Nathaniel,” and they always come through.”

If you’ve got an idea to “Fundraise your Way,” Parkinson Canada can help you make a difference in the lives of people living with Parkinson’s. We’ve developed an event program to support you in making your community event a great success.

Join Rebecca, Jim, Theo, Titus, Alexis, Nathaniel and Yanni and make your plans to Fundraise Your Way. Visit http://donate.parkinson.ca/yourway  for more details.

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