I’m a 66-year-old artist who was diagnosed with Parkinson’s disease (PD) in 2020, though my symptoms began at least a decade earlier. Despite the challenges, I’ve developed innovative techniques to continue my work. For instance, I use a fold-out stick to support my drawing and painting arm, which prevents my hand from dragging. I’ve even turned my hand tremor into an advantage: I’ll put a pencil in my hand and let the tremor do the shading for me while I rest.

My background as a professional mime artist has also proven invaluable. By becoming hyper-aware of my body’s movements, I’ve learned to counteract many frustrating PD symptoms. When my right foot starts to drag due to “drop foot,” I consciously focus on placing my heel down first. Similarly, visualizing a coat hanger helps me automatically pull my shoulders back into their correct posture.

What does C-OPN mean to me?

I joined the Parkinson Community Advisory Committee (PCAC) to give back to our Parkinson’s community. This committee offers a vital platform to learn about the latest research that directly impacts our daily lives and contributes to finding a cure for Parkinson’s disease. Through the PCAC, I feel empowered to be an active advocate, influencing individuals and organizations across Canada about the urgent need to empower people living with Parkinson’s.

What can I contribute to PCAC and the network?

The Canadian Open Parkinson Network (C-OPN) plays a crucial role in connecting researchers and studies with individuals living with Parkinson’s. C-OPN helps to accelerate communication among scientists and ensures the timely sharing of vital information among all stakeholders. For me, C-OPN offers hope in the quest for a cure by efficiently linking researchers with PD participants.

I’m eager to contribute my unique skills and experiences to this network and especially to the PCAC. As a professional mime and illustrator, combined with my background in education, I enjoy using these abilities to support my fellow Parkinson’s community members in any way I can.

Links to different initiatives that I am involved in:

http://MimeOverMind.com

https://parkinsonseurope.org/what-parkinsons-feels-like/

https://www.michaeljfox.org/news/mjff-guest-blogger-barbara-salsberg-mathews-re-illustrating-5-stages-parkinsons-women

My name is Manon Day. I live in Montreal, Quebec. My first neurological symptoms started at age 17.

I experienced orthostatic hypotension, syncope, stuttering, trouble moving, slowness along with many other symptoms.

Over the years, I consulted several neurologists but none of them believed me. In 2011, I had the chance to be referred to the Montreal Neurological Institute. Dr. Postuma diagnosed me with a rare form of young onset Parkinson’s at the age of 27 years old.

What does C-OPN mean to me?

I decided to join the Parkinson Community Advisory Committee (PCAC) in September 2023 because I want to contribute to the Parkinson’s community. My participation within this group gives me a sense of purpose and fulfillment. Finding out more about the cause of Parkinson’s is very important for me. My unique journey could help contribute to greater understanding of the disease.

What can I contribute to PCAC and the network?

The C-OPN organization plays a crucial role for research participation and recruitment. Many patients are unaware of Parkinson’s trials and research in general. This organization desires to make a positive impact for the advancement of Parkinson’s. I strongly believe the community engagement is very beneficial.

My unique personal experience with Parkinson’s can help contribute to better understanding, and knowledge of this complex disease. My feedback can be useful for participation on different projects. Involving patients in the research process brings a different perspective for the research community.

I strongly recommend fellow Parkinson’s patients to participate in research. Patient involvement is crucial for the advancement of understanding of Parkinson’s and for the acceleration of discoveries. Therefore, patients play an important role for the development of new innovative treatments. Helping future generations of patients afflicted with the disease as well as improving quality of life and care. Patients have a sense of fulfillment and contribution in the Parkinson’s community.

On a different note, I am the administrator of two Parkinson’s online groups.

“Everything about Parkinson’s disease” on the Mewe social network

https://mewe.com/join/everythingaboutparkinsons

r/youngparkinson an online group on Reddit for patients diagnosed with yopd

https://www.reddit.com/r/youngparkinson/s/urjt7dPgYA

I enjoy posting reliable content and educating fellow Parkinson’s patients. Communicating with patients helps to cope better with this life altering disease.

See the link below to the Parkinson Canada webinar (February 2025)

“The relationship of a parent having a child with YOPD”

I was diagnosed with Young Onset Parkinson’s when I was 38 years old, so have now been living with the condition for 23 years. I enjoy being active with biking, dancing, and tennis. I like the expression, “Move it or Lose it”, meaning the more I move, the more I can move!

I also enjoy photography, painting, playing the piano, playing pool, and reading.

I was a participant in the Vyalev clinical trial for the past 5 1/2 years and have recently starting using the commercial infusion pump and protocol.

Why did I join the PCAC?

I joined the Parkinson Community Advisory Committee (PCAC) to help bridge the gap between Parkinson’s researchers and those of us living with Parkinson’s. I have been given the opportunity to provide feedback at the early stages of the research process. This helps to ensure that research being undertaken aligns with the needs of people living with Parkinson’s.

What does C-OPN mean to me?

My involvement with C-OPN allows my voice to be heard along with so many others that I represent from the Parkinson’s community. My involvement has included being a member of C-OPN’s Executive Committee, capturing images, and providing feedback in the creation of C-OPN’s website, and being a PCAC member.

What can I contribute to PCAC and the network?

Through my involvement with C-OPN, I provide a lived experience perspective, which is valuable to researchers, to keep the focus on the key issues of this complex neurological condition. In addition, I have learned so much and been very inspired by engaging with my fellow PCAC members.

Why you should participate in research:

I consider participating in research to be an honour and a responsibility. As a researcher you can have the best ideas and a great lab, but if you have no participants…you have nothing. New and innovative research could lead to improved symptom management or even a cure.

Get involved in whatever way you are able!

Links:

https://www.laurinefillophotography.com/

Let me begin this profile by sharing my personal mantra: “Yes, I do have Parkinson’s disease, but it does not have me” and I am determined to not let this disease detract away from who I am as a person. I am 79 and I was officially diagnosed in 2015, but I am aware that I had numerous symptoms for a few years prior to that. My working life began as a store clerk while in high school, moved on to being a bookkeeper & secretary, and at the age of 26 I entered seminary. I was ordained an Anglican Priest in April 1977, being the first female graduate of Theology from Huron College (UWO) to be ordained in the Diocese of Huron. After several years in parish ministry and certification as a Teaching Supervisor of Clinical Pastoral Education, my ministry focus shifted to the hospital environment where I functioned as a Director of a Pastoral Care Department as well as a Chaplain Educator. I also trained as a Psychotherapist and reached Associate Teaching Supervisor in Pastoral Counselling.

Growing up as a child I loved the outdoors where I could discover new things each day by simply turning over stones and seeing what may crawl out from under it. Needless to say, I was a curious child, and I still value my curiosity. I was also quite athletic, playing hockey, football, baseball, cricket (long before girls did) but my real love was to be in the water and swimming became an integral part of my life as a child and youth, swimming on the local swim team. My passion for swimming continues to this day as I am a Master’s Swimmer still competing at the local, provincial, and national level. I have been a member of the London Silver Dolphins for almost 30 years and deeply value all the relationships that I have developed with my team members and Master’s swimmers across Canada and other parts of the world.

Why I joined the PCAC?

In February 2024 I was invited to participate in the C-OPN, Western University Site Research Study because I had been diagnosed with Parkinson’s disease and had indicated an interest in future research studies. As a person living daily with Parkinson’s and recognizing that PD effects everyone differently, I felt I could play a role on the committee by sharing something of ‘my lived experience’ that may be helpful. The PCAC offers a context for developing a greater understanding of Parkinson’s disease that then can help me in ‘advocating’ and hopefully influencing individuals and organizations with regards to the critical and important work of the C-OPN Research Programs across Canada.

What does C-OPN mean to me?

As a person living with Parkinson’s and having participated in the Michael Fox Foundation ‘Fox Insight’ study for a couple of years, I have gained a fuller understanding of the disease and its complexities. Also, having worked in health care facilities in the USA for a number of years, I do appreciate the financial differences between Canada and the USA especially in terms of support for research. Having identified this and having now had some initial exposure to the work of C-OPN here in Canada, I feel it is incredibly important that C-OPN be supported as it evolves as Canada’s central arm in terms of Parkinson’s research.

What can I contribute to this network and especially to this PCAC?

Learning of the work of C-OPN across Canada and the challenges that are faced in the research field plus the crucial benefits they provide in helping to achieve a deeper understanding of Parkinson’s disease, I felt my experience of having lived with the disease and its impact upon my life for the last ten years, I could perhaps share some insights as to what has helped me cope. I have learned the critical importance of self-awareness and maintaining a positive attitude as well as the role of regular exercise in managing the impact of the disease. As a relatively new member to PCAC it is my desire to become more involved in the promotion of the work of C-OPN and how its research is critical in the search for a ‘cure’ to this perplexing disease.

Why you should participate in PD research:

In order for ‘research’ to be credible it must seek to understand the ‘subject’ of its research and what better way for C-OPN to achieve this than to involve persons living daily with Parkinson’s disease. As one who ‘lives’ this experience and still has an ability to communicate fairly readily what that is like day to day, I feel it is important to share what limited insights I may have as a way of broadening an overall understanding of the disease. I also believe, I have a role in helping others living with Parkinson’s to share their experience as well, thereby broadening an understanding of the ‘lived experience’. Participating on the PCAC, which I see as a ‘bridge’, connecting the community and the work of C-OPN in the development of a greater understanding of Parkinson’s disease, I believe the role of research is crucial. In order for research to move forward, there must be those living with Parkinson’s willing to participate in the research programs. Without our participation the search for a cure will not only be limited but also prolonged. I also appreciate the cost of research and that networking and advocating for overall commitment and financial support is a crucial part of the work that must be done.

After my diagnosis and as a Master’s swimmer who had participated in a number of National Master’s Swim Championships, where I swam several events, including the 1500m and 800m freestyle races, I decided that I wanted to ‘dedicate’ a 1500m swim to support the work of the Parkinson’s Society here in Southwestern Ontario.

I was able to raise $4500 when I swam the 1500m free race a few years ago!

I am 46 years old and was diagnosed with Parkinson’s disease when I was 44.

What can I contribute to PCAC and the network?

Since I got diagnosed, I wanted to meet other people with Parkinson’s and see what I could do to help research. This was why I joined the Parkinson Community Advisory Committee (PCAC). I believe in the excellent work C-OPN is doing and learning about the research taking place across Canada gives me hope. I hope to contribute to the network and the PCAC by getting a C-OPN site established in New Brunswick and sharing any contacts and information that may help C-OPN and the PCAC.

Why you should participate in research:

I really believe, the more people get involved in research, the more progress we will make towards finding a cure for Parkinson’s.

When I am not working, I enjoy travelling and spending time with my family.

My LinkedIn profile:  Mark Taylor | LinkedIn

I am a 60-year-old retired man, diagnosed with Parkinson’s five months ago. I have been married for over 30 years, we have three grown children, and one dog, Riley, who keeps me moving with our daily walks. I stay active with workouts several times a week, and I also volunteer at a long-term care home near our home.

Why did I join the PCAC?

I joined because I want to be part of the conversation that shapes research and care. Getting this diagnosis was difficult, but being involved helps me turn it into something positive — a way to give back and support others on the same path.

What does C-OPN mean to me?

C-OPN gives me hope and a sense of purpose. It’s a place where people with Parkinson’s, researchers, and professionals come together, and it makes me feel like I am not just living with Parkinson’s, but actively helping move the science and care forward.

What can I contribute to this network and especially to this PCAC?

I can bring the perspective of someone newly diagnosed — the questions, the challenges, and the optimism that comes with wanting to stay active and engaged. I am committed to being open and honest, and to making sure the voices of people living with Parkinson’s are always front and center.

Why you should participate in PD research as well:

Because research is the only way things will change. Every story matters: the more of us who get involved, the more complete the picture becomes. It is a way to take something none of us asked for and turn it into progress — for ourselves, and for the generations that follow.

My name is Richard Mayede and I had Deep Brain Stimulation (DBS) surgery in February 2021.

I was diagnosed with Young Onset Parkinson’s disease in June 2005 at the age of 37 and from that point forward I was determined to be a source of positivity and encouragement.

What does C-OPN mean to me?

After a successful interview in December 2021, I joined my first meeting with C-OPN in January 2022 as one of two Province Representatives on the C-OPN Clinical Investigators Committee.

The other successful applicant was Dianne Bramble! A year later, in October 2023, and with the addition of a few more PWP joining, the Province Representative Committee became what it is now, the Parkinson Community Advisory Committee.

Why did I join the PCAC?

I applied to C-OPN because I feel, if I can make a difference for future people with PD and make the process of finding out about the disease much easier, then I must take that responsibility!

What can I contribute to PCAC and the network?

I do what I can to support the Parkinson community including this Canadian network: I am a support group co-facilitator. I have raised funds for Superwalk since 2005. After over 10 years of fundraising for Superwalk, I wanted to do more for people with Parkinson’s. In 2016, I asked and was accepted, to join the Board of Directors of the Parkinson Society BC (PSBC). In 2017, 2018, and 2025 I acted as one of the faces of the PSBC’s April awareness campaigns, drawing attention to the many ways that the disease affects patients. My involvement in advocacy efforts in 2020 helped secure more operating room time for DBS surgeries in BC. In 2021, I had DBS surgery, which allowed me to win two consecutive grants in 2022 and 2023 to produce two documentary series based on people with Parkinson’s. I now serve as Secretary of the Board.

I also recently joined the board for Dancing with Parkinson’s

https://www.dancingwithparkinsons.ca

Why you should participate in research:

PWP don’t have to follow my path, but one should participate in PD research that one is comfortable with because the data one provides might be crucial to finding out new info on PD.

Article for Parkinson Society BC:

Brave and lionhearted, Richard Mayede’s Parkinson’s has determined him to be a positive force in life | Parkinson Society British Columbia/

(Photo of Richard Mayede and Vancouver Canucks forward Brock Boeser, whose Dad had PD)

My name is Ben Smith. I am a loving husband and father of two. I have excelled in my industry as a Service Manager in a heavy truck shop in Calgary. Who would have thought only months after my youngest turned 1, that I would begin my journey with Parkinson’s. I have always had a positive outlook, and it was no different on August 8, 2019. My diagnosis was made easy by my movement disorders specialist. She told me that we would find a cure in my lifetime, and I believe her. With that thought in mind, I have made every effort I can to help facilitate that goal. Through participation, philanthropy, and community engagement, I believe we can achieve a cure.

Why did I join the PCAC?

I joined the PCAC in early 2024. I was introduced by my movement disorders specialist. I didn’t know what to expect. I quickly realized that the PCAC was an important part of C-OPN. An organization committed to streamlining Parkinson’s research by providing a single source for Parkinson’s research projects.

What does C-OPN mean to me?

C-OPN is an incredible resource for researchers across the world. Being a part of the PCAC, I have had the privilege of meeting some of these researchers and learned about projects they are working on. It’s clear that the work C-OPN does to maintain and grow a database of such a complex condition is important to expedite research projects that could one day align with a vision of a cure in my lifetime.

What can I contribute to this network and especially to this PCAC?

As a PCAC member I always push to create more awareness of C-OPN. The success of C-OPN depends on two things: Funding and community involvement. As a PCAC member I always ensure that with any Parkinson’s related engagement I try to explain C-OPN and encourage patients to join. This hits both, the funding and community involvement goals. As more patients sign-up as study participants, the database grows stronger and with that, the pool of research participants grows. With growth comes exposure and with exposure comes funding.

Why you should participate in PD research as well:

Participating in PD research is important for so many different reasons. The main reason, I participate, is to facilitate a life without Parkinson’s. Without research we can’t have a cure. If we don’t have anyone to participate in research, we can’t learn about the disease and that means we can’t beat the disease. Participating in research allows patients to learn more about the disease as well. Understanding the purpose of the project can help the participant understand a piece of the disease they may not have known before joining the project.

It really is a win-win!

My name is Dianne Bramble, and I am 57 years old. I live in Ottawa, Ontario, Canada.

I wear many hats – RN, personal trainer, health coach, therapist, writer, painter and a person with Parkinson’s. I was diagnosed in 2013. Since then, I have been working hard and exercising, eating well and staying positive.

Why did I join the PCAC?

I joined PCAC, because I believe that those of us with Parkinson’s need to be involved in research as participants, consultants, reviewers, and even researchers.

What does C-OPN mean to me?

C-OPN is very important for researchers and study participants. By providing research and a database of willing participants, C-OPN is creating a bridge between the two worlds therefore making it possible to shorten the time between designing the study and publishing it.

What can I contribute to this network and especially to the PCAC?

I think that I have something to contribute to PCAC, not so much on the research side, but on the feedback side. There’s always room for improvement.

Why you should participate in PD research as well:

I always encourage the people I know with Parkinson’s to participate in Parkinson’s disease research. I tell them it’s beneficial to us, every time we do this, as it brings us closer to better medications, treatments, and ultimately a cure.

Boxing for health: boxing4health.com
PD Avengers: pdavengers.com
7th World Parkinson Congress: wpc2026.org
Parkinson Canada: parkinson.ca

My name is Serge Boily, I’m 59 years old, and since March 2019, I’ve been sharing my life with an unexpected roommate: Parkinson’s disease.

When I first received the diagnosis, it felt like getting hit on the head with a sledgehammer.

But after the initial shock, I told myself one thing: “I’m not the one who’s going to bend to this disease- it’s the disease that’s going to have to deal with me.”

So instead of letting myself get knocked down, I decided to get involved, to stay informed, and most importantly- take action!

And then, there is another weapon I’ve chosen against Parkinson’s: sports. For me, it’s more than a passion- it’s medicine. I have practiced boxing, running, walking, and today I continue to play pickleball with enthusiasm. Moving is my way of telling the disease: “You won’t win that easily.”

Why did I join the PCAC?

To take action!

I am a volunteer with C-OPN and part of the PCAC. Together, we work to promote research programs, to clearly explain the available services to patients, and to open doors to clinical trials that, one day, will change everything. I am also a member of Parkinson Capitale-Nationale Chaudière-Appalaches, and I sit on its board of directors. In addition, I volunteer with Parkinson Québec, the provincial organization that oversees all regional branches. For me, it was unthinkable to just sit back and watch life go by.

What does C-OPN mean to me?

The C-OPN network brings together scientists, doctors, healthcare professionals, and people like me who live with the disease every day. Through my involvement with C-OPN and the PCAC, I’ve had the chance to take part in more than 20 research programs in just 5 years.

What can I contribute to this network and especially to this PCAC?

People often say I have a lot of energy, and that I’m a natural unifier. That’s true: I love bringing people together, building connections, and showing that together, we are always stronger.

Through it all, I keep my sense of humor and my smile. Because at the end of the day, Parkinson’s or not, life is still too beautiful to let it slip away. My motto could be: “If the disease forces me to slow down, it should at least know that I’ll keep moving forward, one step at a time, and with a smile.”

Why you should participate in PD research as well:

Because research keeps me positive. It gives me the energy to believe that one day we will find a cure. For me, it’s a way to stay focused and to always look forward.

Curious and always willing to help, I also contribute to other projects that push research forward and give a stronger voice to those living with Parkinson’s.

But my commitment doesn’t stop at meetings and committees. Alongside other determined people, I co-founded the organization ‘Victimes des Pesticides du Québec’ (Victims of Pesticides of Quebec). Our mission: to support, inform, and defend those who, like me, are living with the consequences of an invisible but very real poisoning.

https://www.victimespesticidesquebec.org/

My name is Sandra Alexander, and I was a district manager for a merchandising/marketing company for 30 years where I managed between 35-45 people remotely. In my role as UBC Health Mentor as a caregiver for someone that lives with Parkinson’s, I work with 3-4 students each year to discuss everything related to the disease and navigating the medical system.

I am a 65-year-old wife, daughter, mom, and grandmother.

My husband Gary has Parkinson’s disease and received the official diagnosis 31 years ago when he was 40. We have 3 sons, two are married with children.

I have been a caregiver to Gary full-time for the past 6 years and was also the caregiver for my mom who passed away in January 2025 at the age of 90. She had late-onset Parkinson’s for the last 5 years.

I love to walk with my dog which I try to do at least 2 times a day, I also love to swim and do so whenever I get a chance. With Gary’s illness getting worse, adding several heart issues to the picture, I have considered putting in a swimming pool in our backyard. I enjoy oil painting and now that I am retired, I hope to do more in the winter months.

Coping mechanisms for me are helping others. I am a peer support for Parkinson’s Canada, and I also help the local PSBC in Vancouver looking after the registration at the SuperWalk @ Stanley Park every year.

Why did I join the PCAC?

I joined the PCAC because I was interested in how data on persons living with Parkinson’s is managed and used, and how to encourage others to join.

I also wanted to hear about and be part of future experiences with Parkinson’s.

What does C-OPN mean to me?

For me, C-OPN as an organization is about the people, people that bring awareness to the disease, and it is also about how we can share data with others working in the field of Parkinson’s disease.

What can I contribute to PCAC and the network?

What I feel I can contribute to this network is from the outside looking in, as a primary caregiver! I have had to look after medications, doctor’s information, managing appointments, moods, housing, and everything else that we need on a day-to-day basis.

I have a binder for Gary where I put everything that is documented on the medical side of things so it is right at my fingertips at all times, when needed in hospitals and doctor appointments. This way, I can be his advocate.

Why you should participate in research:

Be part of the movement! We all can make a difference by any means possible. Providing time, testing etc., so we can learn from each other and provide data to ones that wish to learn more about the disease. North America has the highest percentage of people living with Parkinson’s, we need to find out why!

During my time on the PCAC I have connected with several participants all across Canada that share the same goal to understand how, why and what we can do going forward.

This organization is so well run, my time has been appreciated and valued.

Gary and I were part of the Parkinson’s Society of BC – April Campaign

My name is Stewart, a PWP for at least 5 years, probably longer. I am an accountant, but don’t stop reading now! I found something far more fun: living with PD!

Ok, what I meant to say was Tai Chi!

Tai Chi and Qigong have become part of my everyday life. The practice helps me with balance and posture as well as my confidence. It’s an inspiring and lifelong journey to be on.

Why did I join the PCAC?

I am not a medical man, researcher or scientist, but I am curious and wondered how I could help those who are.

What does C-OPN mean to me?

The cure for PD will come from research. Research will accelerate through collaboration and sharing data, exactly what C-OPN is doing!

What do you think, you can contribute to this network and especially to this PCAC?

Hopefully, when asked, another perspective. If you are going to cure something, who better to talk to than someone who lives with the reality every minute of every day.

Why You should participate in PD research as well:

The way we will find a cure is by participating in research. There are thousands of clever people trying to make our life better. Why not give them a hand? There are countless ways you can help, and you don’t have to do ALL of them!

Start with one, say answer a questionnaire, and see where it takes you!