3 questions to Yvan Demers who has been living with Parkinson’s for 6 years

On International Dance Day, we met with Yvan Demers, a dance passionate who talks about his daily life with Parkinson’s disease with poetry and humor. He delivers a touching and inspiring story with a nice dose of good mood.

To begin, could you quickly introduce yourself?

Yvan: my name is Yvan Demers, I will be 60 years old in a couple of weeks and I have been living with my friend Parki for the past six years. When I finished my career 4 years ago, I “re-processed” my priorities. I built a diversified program including dancing. By the way, on this International Dance Day, I would like to celebrate all the inspiring dancers on the planet. Personally, I’m more of a dancer inspired and animated by various types of music. If the rhythm matches my mood, I allow myself to flow, my body softens. It’s like drinking the magic potion of Panoramix. You will understand my description if I tell you that I liked the adventures of Asterix.

How does dancing fit into your daily life with Parkinson’s?

Yvan: when my friend Parki Rigidity wakes me up in the morning, I have the choice to either try again to sleep with Parki Rigidity or to get up. You have to know that Parki Rigidity is 80 years old. He gets up slowly and brushes against the wall. It is a question of balance. He feels a contraction under his left foot. He hardly gets dressed without making too much noise so that he doesn’t wake up his spouse. But when it is barely 5 o’clock, it is too early for medication. Parki Rigidity is very invasive. So nothing better than turning on my wireless headphones and choosing a playlist on Deezer to keep him away! Parki Rigidity is the person who sits on the edge of the dance floor and doesn’t like to move for all sorts of good reasons. I then randomly look for the rhythm that will make me move. And here we go! I quickly find my flexibility, my balance and my fluidity. I surprise myself. For a few moments, I am thirty years old and I move on my improvised dance floor between the table, the counter and the sofa. Parki Rigidity is tired of it. He leaves to rest. I am sympathetic to his cause, but after all, it’s my body, it’s my choice. It’s motivating to see yourself move gracefully (let’s say the word gracefully is a subjective and personal assessment).

This motivation stimulates my energy, but I can’t dance all day because when I dance I “forget everything”. I live in the present moment. A kind of mindfulness found in meditation. At certain times of the day, my head starts moving like the big-headed dolls mounted on the dashboard of a car. It is Parki Trembling who has just joined me again. He is the one who makes me waddle from one side to the other. However, a good musical rhythm and a little room to move, then Parki Trembling returns to sit on a bench.

Dancing is part of a whole in my daily routine with Parki. For example, cardio workouts influence my future dance moves and vice versa when I dance I improve my coordination and flexibility for more efficient workouts. The same principle applies when I do yoga and meditation where breathing becomes more important, etc. I like the variety and I am aware that it will evolve over time… but I believe that dancing is here to stay.

And how did this passion for dance come about and what does it bring you?

Yvan: recently, a participant in a class asked me if I had been in Cirque du Soleil. My career was spent sitting in an office and I had no time or energy to move at the end of the day. Flattering or joking comment? Actually, I don’t care. At 60, with medication and a program that includes dancing, I have the chance to be 30 and 80 in the same day. Imagine the benefits: the experience and wisdom of an elder, mixed with the energy and flexibility of a young adult. As for the 80 years that my friend Parki gives me, it reminds me of the chance I have to move and especially to dance with the best of what’s left.

A little word for the end?

Yvan: on this international dance day, I thank all the inspiring dancers. Let yourself be inspired and dance.

As for me, my dance style is creative dance. I don’t really have a style, but I like Carol Jones’ creative dance and movement sessions. It inspires me to do new tricks. She’s been dancing for about 40 years. She takes some of my moves and suggests variations that challenge my coordination, flexibility and balance. The results are sometimes amazing and elegant.

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And don’t forget, in this Parkinson’s disease awareness month, you can make a difference by donating virtual tulips. It’s easy, just visit CanadaHelps.org and select the “Virtual Tulips” tab under “Assign your donation to one of the funds created by this organization”.

3 questions to Judith Gay, caregiver to her husband for 18 years

Did you know that? In the greater Montreal area, more than 10,000 people are living with Parkinson’s disease, but 40,000 people are affected if we count the caregivers. The role of caregiver is often a natural one, but it is also associated with many challenges.

In this Parkinson’s Awareness Month, we would like to acknowledge all those women and men who are committed to providing help and support to their loved one living with the disease. We met Judith Gay, who has been a caregiver to her husband for 18 years, and who shares with us an authentic and moving story.

And don’t forget, in April, you can make a difference by donating virtual tulips. It’s easy, just visit CanadaHelps.org and select the “Virtual Tulips” tab under “Assign your donation to one of the funds created by this organization”.

To begin, could you tell us how Parkinson’s disease affects your daily life?

Judith: Parkinson’s disease affects our lives in many ways. Our love life, our family life, our friends, our activities, our projects, nothing is spared. This change can be very small or very big. So the life of the person with Parkinson’s and our life becomes life with Parkinson’s, every day, every hour. The body and the mind are attacked. Nothing is the same as it was before and we don’t know what the future will bring. We have to adapt.

What does it mean to you to be a caregiver?

Judith: being a caregiver says it all. It means helping our partner, our loved one, to maintain his or her autonomy, accompanying him or her through the changes, listening to him or her, planning ahead, always being informed, forgetting oneself, living through losses, successive little griefs, being angry, laughing, crying, worrying and, despite everything, hoping.

In April we #FlowerHope, what advice could you give to people who are affected by this disease?

Judith: after living with Parkinson’s disease for 18 years, I can see the ups and downs of my partner and myself. But I learned one thing, don’t isolate yourself, stop thinking that only you can help your partner. One day, I knew I needed help if I wanted to help him. With a dose of courage and humility, I made a call to Parkinson Montreal-Laval. My life changed, I was no longer alone.

3 questions to Ingrid Verduyckt, PhD, Assistant Professor at the School of Speech-Language Pathology and Audiology.

Did you know? The majority of people living with Parkinson’s disease have language problems: the voice may become hoarse or shaky, articulation less precise, speech altered…

On this April16, International Voice Day, we give the floor to Dr. Ingrid Verduyckt, assistant professor at the School of Speech-Language Pathology and Audiology at the University of Montreal. She is passionate about voice and delivers a strong and optimistic message, inviting people living with Parkinson’s disease to make their voices heard.

And don’t forget, in April, you can make a difference by donating virtual tulips. It’s easy, just visit CanadaHelps.org and select the “Virtual Tulips” tab under “Assign your donation to one of the funds created by this organization”.

To begin, could you quickly introduce yourself?

Ingrid:I am originally from Belgium and have lived in Sweden for a long time. It was there that I started studying speech therapy, because I was passionate about the voice. I started working as a speech therapist in Sweden and then in Belgium, with people who have difficulties with their voice. Since 2014, I am no longer a speech-language pathologist, but I am a professor and researcher at the School of Speech-Language Pathology and Audiology of the University of Montreal. I am passionate about the diversity of voices, and their unique character. We all have our own unique voiceprint that works a bit like our sound face. Our voice is intimately linked to our personality, and that is fascinating! In 2018, I had the opportunity to meet a member of Parkinson Montreal-Laval who invited me to the vocal practice groups she was organizing for and with other people living with the disease. This meeting made me aware of the vocal difficulties experienced by these people and the lack of available and accessible tools for them to act on their voice. Since then, I have been involved with associations for people with Parkinson’s disease and I am focusing my research on developing tools and voice resources for their members.

Why is it essential for people living with Parkinson’s disease to practice their voice?

Ingrid: Parkinson’s disease affects the vocal gesture and changes the quality of the voice. The voice can become weaker, more fragile, unstable, cracked or broken, jerky, trembling, etc. Words may be more difficult to articulate and you are less likely to be understood. The voice is produced by a set of muscles that activate together in a rapid movement that requires fine and precise coordination. With age, and even more so with Parkinson’s disease, this precise and complicated gesture becomes more difficult to program and to perform. Changes in the voice can mean that we have difficulty recognizing ourselves in this “sounding face” that no longer sounds like us and the people around us can no longer understand us as well as before. This leads to communication breakdowns and can make people lose the will to speak.

But by speaking less, we miss moments to train this gesture and these muscles of the voice. We can then fall into a negative spiral where the voice deteriorates more quickly. As with our other muscles and movements, it is important to work on our voice daily, to make sure we take a “vocal walk” at least every day! A vocal walk can be singing for 15 minutes, reading a long text aloud, walking while talking with another person, participating in a vocal practice group or a choir for example. For specific training and therapeutic purposes, it is recommended to consult a speech therapist who will be able to propose an individualized program.

In April we #FlowerHope, what advice could you give to people who are affected by this disease?

Ingrid: dare! Dare to make your voice heard! Be proud of what it is and the connections it allows you to make. Don’t judge it harshly, cherish it, take care of it as you can! Think of all the things it has allowed you to do since the beginning of your life: to let the child you were hear when he was hungry or in need of comfort, the bursts of laughter that have delighted your friends, the words of love that you have been able to say to your loved ones, the anger that it has allowed you to express, the comfort that it has helped you to bring to a loved one.

A final word?

Ingrid: your voice is precious, beautiful, and important, in all its forms! On days when it works the way you want it to, and on days when it seems to strike, it still deserves to be heard and respected!

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Join Ingrid Verduyckt’s students every Friday at 4pm for the Practice Your Voice workshop.

3 questions to Stéphanie Langlois, physiotherapist in neurology at Kinatex Sports Physio Ste-Rose

April 7th is World Health Day, an opportunity for Parkinson’s Montreal-Laval to thank all the health professionals who are committed to providing people living with the disease with adapted care and thus enabling them to maintain their quality of life. To talk about this essential care for the health of those affected, we met with Stéphanie Langlois, a physiotherapist in neurology, to talk about her job and the upcoming challenges.

And don’t forget, in April we #FlowerHope. You too can help make a difference by donating virtual tulips. It’s easy, visit CanadaHelps.org and select the “Virtual Tulips” option.

To start, could you quickly introduce yourself?

Stéphanie: I have been a physical therapist since 2015 and have primarily practiced in a hospital environment with neurological clients. I have worked with people with Parkinson’s disease and various parkinsonian syndromes. Most of my work with this clientele was to establish a functional portrait and to direct the patients towards the appropriate post-hospitalization resources. I have recently joined the team at Kinatex Ste-Rose, which has been offering a neurological rehabilitation service since April.

Could you explain simply what it means to live with Parkinson’s disease for patients and their relatives?

Stéphanie: living with Parkinson’s disease or any other Parkinson’s syndrome means that the person must be resilient in the face of a degenerative disease. The challenge is not to lose the motivation to act to maintain autonomy and quality of life. Dealing with the loss of autonomy can be very difficult for the person living with the disease, but also for their relatives. Physiotherapists are professionals trained to support and advise people living with this disease as well as their relatives.

What do you consider to be the next major challenges related to Parkinson’s disease?

Stéphanie: the population is aging in Quebec, which poses challenges in terms of access to care and the availability of resources. On the one hand, the public health network is more and more overloaded. And on the other hand, not all people have the financial means to have care in the private sector, so there may be a gap in the care of conditions that require a rehabilitation service. There is scientific evidence on the effectiveness of physical training, so it would be of great importance that people have access to it.

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3 questions to Francine and Pierrette, twinned at the beginning of the year

At the beginning of the year, Francine Beaudoin, who has been living with Parkinson’s disease for several years, and Pierrette Meunier, newly diagnosed, decided to participate in the new twinning project offered by Parkinson Montreal-Laval. The idea? To bring together two people living with the disease who want to share their experience, learn from each other and develop new ideas for living better with the disease.

In this Parkinson’s Awareness Month, Pierrette and Francine share their inspiring story that shows that together we can make hope flower! And don’t forget, you too can make a difference by donating virtual tulips. It’s simple, go to CanadaHelps.org and select the tulip donation option.

First of all, could you tell us why you decided to participate in the twinning project and what it brings you?

Francine: I have been living with Parkinson’s for 6 years and I keep myself informed with Parkinson’s Montreal-Laval by attending meetings and conferences. When I was told about the twinning project, I had several motivations such as helping, bringing, through my experience, a better understanding of the symptoms to a newly diagnosed person and establishing a bond of trust with a new person.

Pierrette: diagnosed 8 months ago, I need to use all the resources at my disposition to learn more about the disease, its evolution, the medication and how to manage it in order to avoid stress and anxiety as much as possible. Therefore, the twinning project seemed beneficial to me. It allows us to exchange with another person living with Parkinson’s like me. We can share our experiences, talk about our concerns, break the isolation, find common interests and socialize.

Francine: because of the pandemic, for the past three months, our activities have been limited to phone calls every Saturday for about an hour. At this time, we have made 10 calls that have allowed us to share our respective experiences and to begin to establish friendships.

Pierrette: we would have enjoyed other activities suggested by the project, such as a walk in a park, a visit to an exhibition, an excursion to a restaurant or to do sports together or simply to be able to talk about our experiences over a good cup of coffee, but these activities are impossible for the moment because of the sanitary context.

What does living with Parkinson’s disease mean to you?

Francine: after the shock of the diagnosis, we went in our own way to seek support and information to be advised and comforted. Indeed, this degenerative disease is scary and creates a lot of stress and anxiety. In addition to the apparent symptoms, it is necessary to adapt to a medication that is not always obvious.

Pierrette: we have many questions to ask our neurologist or our family doctor. Unfortunately, these professionals are not always available so we are happy to be able to refer to an association like Parkinson Montreal-Laval. The resources on the disease, the conferences, the physical activities, the meditation and relaxation workshops are a great help to tame the disease.

In April we #FlowerHope, what advice could you give to people who are affected by this disease?

Francine: don’t stay alone with the disease and seek help and support from an organization like Parkinson Montreal-Laval in order to be listened to and comforted.

Pierrette: when facing the disease, it seems essential to us to keep a positive attitude! To better cope with Parkinson’s disease, it is important to respect your rhythm while learning to slow down. In addition, if possible, it is a good idea to do physical exercises on a daily basis.

A final word?

Francine: with this twinning project, we have established a beautiful complicity and we are discovering affinities. We are grateful that this partnership has been set up.

Pierrette: we will carry on our friendship even after the project is over. It will be an asset in our lives as diagnosed people to share our concerns, break the isolation and learn more about each other.