Laughter, song and good works earn David Simmonds award

David Simmonds, standing, with Earl Bakken
David Simmonds, standing, with Earl Bakken

David Simmonds brings music and humour to his community and inspires hope in people with Parkinson’s. For these gifts, and many more, he was recently honoured with a Bakken award, which included a trip to Hawaii last month and a $20,000 ($US) donation to a charity of his choice. He honoured Parkinson Canada with this gift. David was selected as one of twelve honorees from more than 200 applicants from around the world.

“Humour can inspire others, both those living with the same condition who are fearful, and those without it, who gain an appreciation of its challenges,” David says.  He also notes that while those who have a medical condition often garner attention and accolades for their accomplishments and perseverance: “It is those who journey with us, the caregivers, who should not be forgotten. They are the true stars,” he adds.

Diagnosed with young-onset Parkinson’s 23 years ago at the age of 39, David underwent deep brain stimulation (DBS) surgery five years ago.  Once the stimulation was stabilized, it gave him a new freedom of movement. “I no longer had to strategize in coping with the basics of my life. Was I going to take the pill first, or open the cupboard to get a glass, or figure out which tap to turn on to get some water,” he says. “It gave me a baseline level of functionality that was much higher than before.”

Still, the long trip to Hawaii can be gruelling for anyone, not just a person living with Parkinson’s. “Travelling to Hawaii was a challenge I didn’t think I’d want to do, but I was able to accomplish it,” he says. David’s wife Dr. Michelle Simmonds traveled with him to Hawaii and his daughter Erica, 33, of Vancouver, met them there. David also has a son Jeremy, 31, who lives in Ottawa.

While the award activities were scheduled over three days, the family stayed an extra week in the tropical paradise. It was a balmy 80 degrees (Fahrenheit) every day and they visited a number of the sights, including the Volcanoes National Park. What stood out most for David though was meeting his fellow honorees.  “They all appeared to be in robust health and had accomplished some outstanding things since being fitted with their medical devices.”

Living with a medical device is a qualification for Medtronic’s Bakken Invitation, honouring the legacy of Medtronic co-founder and humanitarian Earl Bakken, who challenges others to give back to their communities with the “extra” life they have gained through medical technologies. “Live On. Give On.” is the award’s slogan.

David Simmonds, second from left, standing, with the other 2015 Bakken honourees and Earl Bakken, seated, centre.
David Simmonds, second from left, standing, with the other 2015 Bakken honourees and Earl Bakken, seated, centre.

And David has certainly given a great deal to the Parkinson’s community. He served as Chair of Parkinson Society Canada and was instrumental in bringing independent Parkinson’s organizations into a federation, with one national voice.

Debbie Davis, Vice President, Mission and Managing Director, Ontario at Parkinson Canada, had this to say about David: “Working tirelessly, David traveled across Canada meeting other volunteers to show them the value for people with Parkinson’s if all agencies worked together. This inspirational work showed David’s passion and commitment to the community while living well with Parkinson’s.”

Joyce Gordon, Parkinson Canada’s CEO adds, “It was David’s vision to bring together all neurological charities in Canada, in 2008, into a coalition called Neurological Health Charities Canada (NHCC.) This group secured $15 million to undertake a National Population Health Study of Neurological Conditions, the first of its kind in Canada, which was released in 2014.”

In addition to these outstanding contributions, David has also testified at several government task forces on health and shared his Parkinson’s journey with many audiences. In recognition of his contributions, Parkinson Canada established the David Simmonds Parkinson’s Leadership Award, and embraced his song I won’t see darkness, I’ll see light.

That’s right; David is also a musician and a newspaper columnist. Before retiring in 2000, David was a lawyer in Ottawa. His wife Michelle worked as a physician. They left the nation’s capital and moved to the Village of Wellington, population 1,700, in Prince Edward County, on the shores of Lake Ontario. It’s a picturesque spot with a mix of urban and rural dwellers. The Simmonds dove right in to the life of their new community.

These days Michelle and David perform with a band called Station Road at community charitable events and David performs his own songs at open mikes around Prince Edward County. “I’ve always been musical, but hadn’t done it seriously before stopping work,” he says. He and a friend, Sjef Frenken of Ottawa, are just completing a CD of 32 songs they have co-written, with David writing the lyrics.

David also writes a humourous column for the Wellington Times, about 250 of them so far, many of which are reprinted at www.grubstreet.ca. A recent column speculates that the Canada Revenue Agency could spruce up their tax form mailings by taking inspiration from the direct marketing efforts of Reader’s Digest. Check out www.wellingtontimes.ca for more chuckles from David.

And, if you’d like to hear some of David’s songs, we’ve got 10 copies of his CD The Parlour Recordings: Serious, Sad, Silly & Spiritual Songs, to give away to the first 10 readers who post a comment on this story. If you make a comment, please also send your mailing address to us at: communications@parkinson.ca, so we can mail you your CD.

Location, location, location: the right target for deep brain stimulation

Dr. Frederic Bretzner
Dr. Frederic Bretzner

Deep brain stimulation (DBS) is a surgical treatment for the debilitating motor symptoms of Parkinson’s disease. Although the surgery relieves the symptoms in some patients, it doesn’t work well for others.

The surgery involves implanting electrodes in the brain, and then stimulating areas of the brain with an electrical current. Because of the treatment’s uneven success, some researchers, including Frederic Bretzner, wonder if the problem lies with the group of brain cells that are being stimulated. He has recently received a two-year, $90,000, Pedaling for Parkinson’s New Investigator Award from Parkinson Canada’s National Research Program to pursue this research.

Bretzner, a neuroscientist and assistant professor at Laval University, believes the pedonculopontin nucleus region in the brain is an important target for deep brain stimulation. This region encompasses two groups of neurons, whose different purposes Bretzner is investigating.

Glutamatergic neurons may incite movement, and cholinergic neurons may inhibit movement and muscle activity. If he determines which neurons do what, Bretzner’s research may give surgeons a new target for the electrodes they use in deep brain stimulation.

“Our hypothesis is that in Parkinson’s disease, there is an imbalance between excitatory and inhibitory circuits in the pedonculopontin nucleus,” Bretzner says.

He is investigating the use of photo-stimulation to activate or inhibit these groups of neurons. He hopes to show that by stimulating motor-related neurons that are dying, or by blocking neurons that are inhibiting movement, he might observe improvements in movement and posture. His work could also point to the benefits of photo-stimulation, as an alternative to deep brain stimulation.

Bretzner has always been fascinated by the potential of neuroscience to help us understand each other, he says. Although technology doesn’t yet allow us to achieve his childhood dream of reading people’s minds, his research may yet shed light on the way the brain works.

Read about other researchers recently funded by Parkinson Canada’s National Research Program.

Caregiver webinar offers help and hope to hundreds

“Thanks so much for posting that webinar; I would have never had that available to me in the small northern community that we live in. Thanks to all who worked to put that together.” – Jackie Miller

Jackie Miller is a care partner, along with her husband, to an aunt and uncle, one with dementia and the other with Parkinson’s.

Family members and other caregivers play a major role taking care of people living with neurological health conditions like Parkinson’s disease, Alzheimer’s disease and Multiple Sclerosis. Many caregivers would not have it any other way. Yet, caregivers often need help to manage their own needs. And we know that stress can have a serious impact on the health of caregivers.

In December 2015, Parkinson Canada, in partnership with Alzheimer Society and the Multiple Sclerosis Society of Canada presented the live, interactive webinar Taking Care of Yourself through the Ups and Downs of Caregiving. The webinar can be viewed at any time through the online archive by anyone with access to a computer and an Internet connection.

More than 150 people from across the country logged in to hear caregiving experts Bonnie Schroeder and John Parkhurst, care partner for his wife Margot, who lives with Parkinson’s disease, share the physical and emotional changes that can come with caregiving. They explored the changes that can arise with each stage of caregiving; the range of feelings (the ups and downs) as a natural part of caregiving; the ways to spot stress and other mental health concerns; and tips for staying healthy and well.

Bonnie outlined the characteristics of the six stages of caregiving: The expectant caregiver; the new caregiver; the committed caregiver; the experienced caregiver; the transitioning caregiver and the treasuring caregiver. John shared his experiences as a care partner, highlighting three key messages: You are not alone, others are going through this too. What you are feeling – good, bad and ambivalent – is normal. And, there is help available.

“Ninety-five per cent of those who participated in this webinar reported that the information and advice given in the session was useful to their day-to-day life,” says Grace Ferrari, Senior Manager, Education & Support, Parkinson Canada. “I would encourage anyone who is caring for a person with Parkinson’s to listen to this recording – anytime, anywhere.”

Caregivers would also benefit from the accompanying downloadable self-assessment resource, available online. “We know many caregivers feel stress; as many as 35 per cent of caregivers who care for someone with a neurological condition, report feeling stress,” says Grace Ferrari. “Caregivers feel pressure and anxiety when part of their life is not in balance.” The caregiving resource can help you determine your areas of stress and create a personalized plan to stay healthy and well.

A subsequent caregiver webinar on finding help and navigating through the health care system and social services is scheduled for broadcast in the spring. Further details on the next webinar will be posted on www.parkinson.ca, once they become available. In addition, a French-language caregiving webinar is currently being planned for the spring.

Parkinson Canada is dedicated to helping people living with Parkinson’s and those who care for them, enjoy the best life possible. Visit www.parkinson.ca for a range of information and resources for those living with the condition, and for caregivers. You’ll also find an interactive map, which leads you to resources, such as support groups, in your community. You can also contact our National Information and Referral Centre at 1-800-565-300 or send us an email at info@parkinson.ca. Health professionals, including professional caregivers, are encouraged to access additional resources at www.ParkinsonClinicalGuidelines.ca.