Yvonne Morgan tells it like it is about her life with Parkinson’s

Yvonne Morgan, back, centre, surrounded by her four children. Sandra is left, front.
Yvonne Morgan, back, centre, surrounded by her four children. Sandra is left, front.

Yvonne Morgan was already familiar with tragedy when she was diagnosed with Parkinson’s disease at the age of 52, a decade ago. Her first husband died of a brain tumour at 38, leaving her with four children aged 10 to 17 to raise on her own in the village of Addison, just outside of Brockville, Ontario. While it was a struggle, Yvonne had plenty of family in the area to lend a hand and “the kids were great,” she says. She was also fortunate to meet her second husband David and remarry in 2001. Between them, they have eight children and 11 grandchildren.

When Yvonne was diagnosed, she was a working as an administrative assistant at the Brockville Psychiatric Hospital. She also had previous experience working with homecare and long-term care patients. “I knew what Parkinson’s could do to you,” she says. She’d also watched her sister Irene cope with her own Parkinson’s diagnosis 10 years earlier.

Yvonne first connected with Parkinson Canada by participating in an exercise class. She later joined the Brockville support group and has taken part in their local Parkinson SuperWalk. “The support group is a great way to connect with others in a similar situation. Sometimes David will even attend alone, when I can’t make it,” says Yvonne. The members meet up with one another outside of meetings too. “And SuperWalk has bonded us all even more. It is a chance to meet the families of our group members.”

Read on as Yvonne shares her own personal account about living with Parkinson’s; following Yvonne’s reflection, her daughter Sandra Villeneuve tells the story through her eyes over the years.

What it is like to live with Parkinson’s

When I was first diagnosed, I didn’t think why me? I thought why not me? My sister Irene had been living with Parkinson’s disease for years and kept such a positive attitude towards life. Couldn’t I do the same? Parkinson’s disease hits every one differently. Irene had trouble with gait freezing, not being able to move. I noticed my handwriting was small and although I had always been a fast, accurate typist, I was getting many red lines on-screen showing I was making mistakes. How could this be? I realized my one hand was typing faster than the other and everything was out of sequence. I also became so tired I could hardly stay awake in the afternoon at work. People started to notice. It was a fatigue like I had never experienced before. I saw a marked difference in my lack of expression and I had a slight tremor in my jaw.

My family doctor diagnosed me with Parkinson’s disease, but made me an appointment with a neurologist Dr. David Grimes in Ottawa to confirm the diagnosis. He is a wonderful doctor, very thorough and caring too!

Parkinson’s is so much more than having a shake or tremor or even so much more than a shuffling gait. Parkinson’s robs you of the person that you are and the person that you could have been. Every day you notice new things: numbness in the left foot, more dystonia, leg cramps and spasms. Painful to say the least. You may notice your eyes are blurry. You have dreams so vivid you sometimes act them out by kicking, screaming, pushing or jumping out of bed in fear that you are being chased by wolves or snakes, etc. You may have trouble with constipation, or trouble completely emptying your bladder, or experience frequency or sudden incontinence.

Some other symptoms you may experience are depression, anxiety, lack of concentration, onset of Dementia, small cramped handwriting (micrographia), lack of facial expression, the list goes on and on.

The person you had planned to be when you retired is no longer there. Instead there is this person who has to function on a three-hour medication schedule with slowdown periods half an hour before your next pill time, and then another half-hour wait until you are at your maximum level again. You feel like a little old lady with increased poor posture and your neck protruding several inches before the rest of you. It isn’t easy, but then neither is any disease. You feel embarrassment when you meet someone you haven’t seen in a while. They really notice a decline in your health. You want to scream out: “I don’t need your pity. I don’t want your sympathy. I am still alive here in this body.” Although it may seem my body is playing a horrible trick on me, this is still me! I am only 62 years old. I have at least a quarter of my life time to live out yet.

Thankfully there is medication, Levadopa being the gold standard. It gives you your life back for a while, but then it is known to sometimes turn on you. It stops helping, or it gives you nasty side effects like dyskinesia.

All in all, it is not a pleasant thing to have Parkinson’s disease. Now I find myself occasionally saying: “I wonder what the future holds for me.” None of us know. A person could be involved in an accident or develop terminal cancer. I am thankful I have an understanding of my disease and I have heard it said many times: “You don’t die from Parkinson’s, you die with Parkinson’s.”

We have a terrific support group in Brockville. It is a great help to me. I look back in my life and remember those I knew who had Parkinson’s. There were many of them, from all walks of life. I have found the best way to deal with this disease is to do what you can on your good days; take mid-day naps when you feel fatigued; be grateful for the things you can do and try to focus on others instead of yourself and your issues. My faith in God, and knowing I am never alone in my walk through this journey, keeps me going. I am so thankful for my husband David, and my family, for their support.

A special thanks to the facilitators of our Parkinson Canada Brockville support group, Maria Millward and Robin McMillan and to the Community and Primary Health Care centre for the space for our meetings. You are amazing people! Your dedication to our group is really appreciated.

A tribute from Yvonne’s daughter Sandra Villeneuve

When we asked Yvonne’s eldest daughter Sandra Villeneuve for her thoughts on the impact of Parkinson’s on her mother’s life and on the family, and about their plans for Mother’s Day, she sent us this lovely tribute. With Mother’s Day still fresh in our hearts, we thought it fitting to share what she submitted to us.

How Parkinson’s has touched our family?

We grew up watching our mom take on many life challenges – living in the country meant lots of hard work, being a widowed mom of four kids and teens, we saw her go back to school and even move to a new province to pursue more career opportunities.

She has always been strong, funny and above all, very giving to her family and friends and community. So in a way, her Parkinson’s diagnosis was just another one of those challenges that she faced bravely. Where many people diagnosed at a younger age might avoid other people more advanced in the disease, not wanting to associate themselves with people aged by their physical symptoms, one of the first things she did was find a support group and ask for advice. The words of wisdom she took away sum up how she lives her life now – do as much as you can, while you can. Move to the Philippines for a year? Better now than never! She has done lots of travelling, but also uses her time generously to help family and everyone around her. Visiting seniors in a nursing home, babysitting grandchildren, helping us in all our big moves, and volunteering with her church community.

It is hard sometimes to accept her limitations, and I know that even though her kids are now all adults, she still tries to protect us sometimes, scheduling her meds to be at her best for our family gatherings, trying not to complain about the awkward and frustrating symptoms and side effects. But she is open about her struggles; I’m glad she can talk about it with me. There are so many random, weird symptoms to deal with – all the shoes she passes on to my sister and I, trying to find shoes that are comfortable and secure with shuffling and foot cramping. The frustration of seeing peoples’ reactions to her changed facial expressions, or their lack of understanding for the invisible symptom of fatigue.

This Mother’s Day will probably be our usual get together at their house, maybe a BBQ with lots of food and grandchildren everywhere. There will be gifts of flowers for her garden and flowerbeds that she still enjoys working on. It’s a time to celebrate her, my sister and sisters-in-law, who are also moms, and all the great qualities that we associate with moms, that she lives out so well – love, generosity and self-sacrifice, with a big helping of laughter and appreciation for beauty in the everyday. I aspire to be more like her every year, living life to the fullest, doing all you can while you can, appreciating my health and giving back to my family and community like her.

Investigating fungi: A new frontier in Parkinson’s disease

Dr. Silke Cresswell
Dr. Silke Cresswell

For researchers who study Parkinson’s disease, a new frontier of investigation is emerging: the micro-organisms, including viruses, bacteria and fungi that live in and on us.

At the University of British Columbia, Dr. Silke Cresswell, a neurologist and assistant professor, is concentrating on changes to the olfactory system and the gut that occur long before the tremor, stiffness and trouble walking that are the classic motor symptoms of Parkinson’s. Her latest project is being funded by the Parkinson Society of British Columbia with a one-year, $44,996 Pilot Project Grant from the Parkinson Canada Research Program.

Loss of the sense of smell, insomnia and constipation are all symptoms that people with Parkinson’s may experience years or even decades before their movement difficulties emerge – but often, clinicians don’t link the issues.

“If you look at the pathology, you can see pathological changes in the nervous system of the gut very early on,” Cresswell says.

Cresswell and her colleagues know that the internal surface of the nose and the entire gut are heavily populated by microbes that co-exist there and serve as the interface between the environment and the human body.

“It turns out that the microbes outnumber the number of cells that are human by a factor of 100,” she says. “We have more microbes in our system than human cells.”

Cresswell now wonders if the fungi in the gut influence the development of Parkinson’s disease. Using fecal and nasal samples from people who have Parkinson’s and people who do not, she is assessing those samples to see if changes in the fungi could be related to Parkinson’s and its symptoms ranging from tremor and rigidity to constipation, depression and impaired judgment and reasoning.

If Cresswell can establish a relationship between fungi and the symptoms of Parkinson’s disease, her work would open the door for follow-up studies to examine the mechanisms by which fungi might influence the development of Parkinson’s disease. This line of research might eventually lead to treating the fungi with antifungal medications, for example, to see if eliminating the fungus or reducing the amount of it in the body also eliminates Parkinson’s.

Alternatively, it might also be possible to boost other microbes in the body, such as with probiotics.

“The really exciting thing would be if in the future, we could look at people at high risk of Parkinson’s and treat them early,” she says.

Identifying what role the human microbiome plays in disease is truly a new frontier for medicine, Cresswell says.

“It is something that is easily accessible and modifiable, so it holds promise for treatment.”

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

Tackling tough issues to improve your life with Parkinson’s

Dr. Oury Monchi speaks to MP Joel Lightbound during a  Parliamentary breakfast in Ottawa on May 4, 2017.
Dr. Oury Monchi speaks to MP Joel Lightbound during a Parliamentary breakfast in Ottawa on May 4, 2017.

Are you uncertain about whether medical marijuana may help you? If you undergo genetic testing, do you have to share the results with your insurer? Will your children? And what about access to a new treatment suggested by your specialist; is the cost covered in your province?

Parkinson Canada, along with more than 100 dedicated volunteer Ambassadors and committee members, shares your concerns and has taken these to elected officials and public servants across the country. Like you, they want to improve your access to drugs, clarify your options, protect your rights and improve services to you and your family.

“Together, with one voice, we are making a difference,” says Jacquie Micallef, Senior Manager, Public Affairs and Partnerships.

Here’s a quick rundown of the advances we’ve all achieved in the last few months, advocating on your behalf about issues that matter to you and your loved ones.

Improving your access to medication

On February 14, 2017, the BC government approved coverage of Duodopa® for people with advanced Parkinson’s, following a successful letter-writing campaign asking the government for public funding of Duodopa.  While inspired by this victory, other parts of Canada still do not cover Duodopa. You can join the current campaign for coverage of Duodopa in Nova Scotia. “There are encouraging signs that coverage of Duodopa will be coming to Nova Scotia,” says Micallef.

Clarifying your options

In response to the increasing demand for clarity and information from the Parkinson Community in Canada, the Parkinson Canada Board of Directors recently approved two new position statements this year, addressing federal legislation, both new and pending.

Marijuana (also referred to as cannabis), is legally accessible in Canada for medical purposes. To date, it has not been conclusively demonstrated by science-based evaluation that marijuana can directly benefit people with Parkinson’s disease. There is a need for larger, controlled studies to better understand the efficacy of medical use of marijuana for Parkinson’s. You can read our position statement on medical marijuana and Parkinson’s and background information here.

On June 17, 2016, Bill C-14 on Medical Assistance in Dying became law in Canada. In response to a demand for information and clarity from the Parkinson’s community across Canada, including: people living with Parkinson’s, their families and the people who provide care for them; Parkinson Canada developed a position statement on the new, federal Medical Assistance in Dying legislation. Background information is also available on the same website page as the position statement.

Parkinson Canada’s position on medical assistance in dying is guided by Canadian federal legislation; our vision, mission and values; and consultation with many sources including, most importantly, the Parkinson’s community.

Sprague Plato shares his story at a Parliamentary breakfast in Ottawa on May 4, 2017.
Sprague Plato shares his story at a Parliamentary breakfast in Ottawa on May 4, 2017.

A dementia strategy and improved caregiver support in Ontario

Last month the Ontario government announced two major investments with impact for Ontarians living with Parkinson’s and those who care for them: The latest Ontario budget includes $100 million over three years for a provincial dementia strategy and the government announced $20 million for caregiver respite services, caregiver education and training and a new, streamlined Ontario Caregiver Tax Credit. (You can read the Ontario government’s news release here.)

The development of the dementia strategy will be guided by the Ontario government discussion paper released in September 2016. This discussion paper was based on consultations that Parkinson Canada engaged in every step of the way. In fact, Parkinson’s disease is explicitly described in the discussion paper: Click here. We are also pleased that the strategy includes the following language: “Alzheimer’s or other dementias,” and “Ontarians with a physical or cognitive condition, injury or chronic life-limiting illness.”

Both initiatives were included in the the Ontario Caregiver Coalition (OCC) submission and presentation to the Ontario Standing Committee on Finance during the pre-budget consultations in January. Parkinson Canada is a leading member of the OCC and, along with the Alzheimer Society of Ontario, wrote the OCC’s budget request. Parkinson Canada and a representative from the Alzheimer Society of Ontario, on behalf of the OCC, presented the request.

A special thanks to Sprague Plato, John Parkhurst, Chris Hudson, Sandie Jones, Robert TerSteege and Dr. Susan Fox for participating as working group members on the development of the dementia strategy. We would also like to extend a thanks to the many volunteers who participated in roundtables across the province, as well as Ambassadors and community members who participated in the letter writing and social media campaigns demanding a  dementia strategy in 2017 (sponsored by Alzheimer Society of Ontario and promoted through Parkinson Canada’s networks).

Fighting for your right to genetic fairness

Parkinson Canada and its Ambassador Network were elated this past March, when Bill S 201, an act to prohibit and prevent genetic discrimination, was passed by the House of Commons. It has since also passed the Senate and is currently awaiting Royal Assent.

The excitement, however, has been dampened as the Justice Minister and Attorney General of Canada Jody Wilson-Raybould maintains the bill intrudes on provincial jurisdiction to regulate the insurance industry, which has fiercely opposed the bill. Only three provinces — Quebec, British Columbia and Manitoba — have expressed reservations about the bill, despite a letter from the federal justice minister inviting other provinces and territories to register their objections.

The legislation will prohibit any person from requiring an individual to undergo a genetic test or disclose the results of a genetic test as a condition of providing goods or services to, entering into or continuing a contract or agreement with, or offering specific conditions in a contract or agreement with, the individual. Exceptions are provided for health care practitioners and researchers. The enactment provides individuals with other protections related to genetic testing and test results.

Wilson-Raybould said the government will wait until the bill clears a final hurdle in the Senate before launching a reference to the Supreme Court for advice on the constitutionality of the genetic fairness act — a process that could leave the legislation in limbo for two or more years.

Parkinson Canada will continue to work closely with the Canadian Coalition for Genetic Fairness and our government champions until all Canadians living with Parkinson’s are ensured of genetic fairness.

Advocating for improved care

On World Parkinson Day, April 11, 2017, Parkinson Canada Ambassadors and delegates hosted a very successful Advocacy Day at Queen’s Park, Ontario’s Legislative Assembly. Almost 50 guests attended the breakfast presentation. Along with additional meetings, Parkinson Canada representatives connected directly with 40 MPPs in total or nearly 40 per cent of all MPPs.

In Ontario, Parkinson Canada is urging the government to do the following:

  1. Fund targeted physiotherapy and various forms of tailored exercise programs.
  2. Implement the “Get it on Time” program in hospitals and long-term care homes.
  3. Stop the inappropriate use of antipsychotic medications for people with Parkinson’s in long-term care homes.
  4. Enhance health care professionals’ understanding of Parkinson’s disease by promoting the use of the Canadian Guidelines on Parkinson’s Disease (due to be updated this fall.)

Read more about our Plan for Parkinson’s in Ontario here.

Coordinating Parkinson’s research across Canada

Earlier this month Parkinson Canada representatives and Ambassadors met with MPs and federal public servants during a “Hill Day.” Our discussions included our request for government support for a Canadian Parkinson Network (CPN). CPN will bring together Canada’s best in Parkinson’s research and will give them a platform to share information and make new connections.

The Network will include:

  • a patient registry with comprehensive clinical information;
  • a database with information from diagnostic (imaging tests, MRI, PET scans), anatomical (neuroimaging, sleep, behavioural and neuropsychological information) and functional measurements;
  • a biobank, i.e. patient biomaterials such as blood samples and DNA for genetic studies.

The Network will better coordinate world-class Parkinson’s research happening across Canada and would create transformational change for people with Parkinson’s and their caregivers to live well in their communities through effective use of health, social and economic resources.

As a leading member of Neurological Health Charities Canada (NHCC), Parkinson Canada also urged the federal government to support the NHCC’s call for a Canadian Action Plan for the Brain.

The Action Plan includes a focus on:

  • Equitable and affordable access to drug treatments;
  • Caregivers who are supported in their role through job protection and income enhancements;
  • Improved palliative and end-of-life care services;
  • Workplace supports and income security;
  • Stigma and barriers to inclusivity ensuring they are addressed through public awareness;
  • Increased funding in neuroscience research to better understand cause, prevention, management and cures.

For more information about Parkinson Canada’s recent proposals to the federal government, download this summary document (PDF).

Parkinson Canada, along with more than 100 dedicated volunteer Ambassadors and committee members, has been taking your concerns to elected officials and public servants across the country to improve your life with Parkinson’s. Many of those involved have Parkinson’s themselves and find that advocating for the Parkinson community helps improve their quality of life.

Consider joining the movement to live well with Parkinson’s and find out how you can become an Ambassador, participate in a letter-writing campaign, or make a donation to help us continue this important work.

Together, with one voice, we are making a difference!

Dr. Andrew Lees to deliver the 13th Donald Calne Lecture

Dr. Andrew Lees
Dr. Andrew Lees

Parkinson Canada is pleased to announce that the 13th Donald Calne Lecture will be presented by Dr. Andrew Lees on Sunday, June 4, at 12:45 p.m. in conjunction with the 21st International Parkinson’s Disease and Movement Disorders Congress being held in Vancouver. His presentation will be suitable for both the public and the scientific community.

Dr. Lees is a professor of Neurology at the National Hospital for Neurology and Neurosurgery, Queen Square, London and University College London. In 2011 he was named as the world’s most highly cited Parkinson’s disease researcher with over 23,000 citations since 1985.

Dr. Lees was responsible for the introduction of the use of apomorphine to treat advanced complications of Parkinson’s disease including dyskinesias and complications of the use of levodopa. In 2006 Dr. Lees received the American Academy of Neurology Movement Disorders Life Time Achievement Award for his outstanding achievements in the field of Parkinson’s disease and other movement disorders. In 2012 he was awarded the Dingebauer Prize by the German Society of Neurology for his outstanding achievement in the field of Movement Disorders.

Be sure to save the date – advance registration and onsite check-in are required as seating is limited. The lecture will be held in Meeting Room 11, East Building, the Vancouver Convention Centre, 999 Canada Place in Vancouver.

Register online at: www.parkinson.ca/calne by May 26, or email Lee.nichols@parkinson.ca or call 1-800 565-3000, ext. 3378.

About the Donald Calne Lecture
Finding better ways to detect, diagnose, treat and ultimately, cure Parkinson’s requires cooperation from a global scientific community. The Donald Calne Lectureship, established in Canada in 2002, honours research that makes an impact on the world stage. Each year, the award celebrates a distinguished neuroscientist whose research is helping us learn more about how to understand, diagnose, and treat Parkinson’s. The recipient gives a speech, on the state of Parkinson’s research, to Canadian scientists, medical professionals, people with Parkinson’s and their families. To learn more about this event and past recipients, visit www.parkinson.ca.

Leave a Legacy

Leave a Legacy

Did you know that May is officially Leave a Legacy month?

Leave a Legacy is a national, community-based public awareness campaign of the Canadian Association of Gift Planners (CAGP). This campaign encourages people to consider leaving a gift in their Will, or another type of planned giving vehicle, to a charity or cause that is meaningful to them.

Leaving a gift to Parkinson Canada in your Will is a simple and powerful way to be remembered. You have the ability to provide hope for people living with Parkinson’s and create a legacy that will last forever.

You and your family are invited to join us for a free webinar on Will planning at 1:30 p.m. on Wednesday, May 24, 2017, presented by Stephen Offenheim, B.A., L.L.B., of Plan Your Will, and Parkinson Canada. Stephen will provide a step-by-step guide of everything you need to consider before writing your Will. The webinar will begin promptly at 1:30 pm (EDT) and you will have the opportunity to ask questions during the 45-minute session.

Register now for our Preparing to Write Your Will webinar on Wednesday, May 24, 2017 at 1:30 p.m.