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Category: People diagnosed

Together it’s better: on the road with TANDEM

Parkinson Montreal-Laval launches its new twinning program

Successful challenge for the twinning project! After a 3-month pilot project this winter, which enabled 10 twinning pairs to be set up, Parkinson Montréal-Laval is taking things to the next level with TANDEM, a twinning program between two persons living with Parkinson’s disease. The concept? To bring together two people who want to share their experience, learn from each other and develop new ideas for living better with the disease.

It is better to move forward together

It is well known that if alone we go faster, together we go further! And this is even more true when you are confronted with the disease. Faced with the shock of the diagnosis and the difficulties that are emerging, isolation can unfortunately appear to be an option.However, staying alone with worries and questions is not the solution! While family members and healthcare providers play an essential role in providing daily support, being able to talk to someone who is going through, or has gone through, the same challenges is often extremely rewarding.

The twinning allowed me to put my emotions and anger into words. By sharing, I realized that it was better to deal with everything. The importance of talking to someone who also lives with the disease, after such an important announcement, is very important,” explains Denis Dupuis, who was diagnosed in 2020 and who participated in the pilot project.

Finding the balance

The TANDEM program allows participants to share their experiences with each other and to find the resources and support they need in these discussions. Anyone can participate, regardless of the number of years since their diagnosis.

Each tandem commits to at least three activities (physical or online) that the participants choose together: a phone call, a video conference but also, when the sanitary context allows it, a physical activity session, a visit to a museum or a meeting at a restaurant.

For the past three months, because of the pandemic, our activities have been limited to phone calls every Saturday for about an hour. At this point, we have made 10 calls that have allowed us to share our respective experiences and to begin to establish friendships,” says Francine, who has been living with the disease for several years and who participated in the pilot project.

Implemented by our advisor Annie Cusson, this program also includes support at every stage and a toolbox to encourage discussion and mutual support.

A twinning full of sharing

This unique experience is based on a set of values and founding principles. In TANDEM, there are :

  • Transmission

Based on a logic of reciprocity, the program encourages the sharing of resources. Each participant shares his or her experience and feelings within the tandem, which contributes to the enrichment of everyone.

  • Apprentissage (Learning)

Being curious about each other is a key element of the twinning. Within each tandem, participants learn from each other, and by learning from each other, we also learn, sometimes, to better know ourselves.

  • Non-Judgment

Open-mindedness and mutual respect are key. These tandems should be safe places where participants can freely express themselves without ever being judged.

  • Developpement

The objective is also to stimulate the empowerment of all participants to better cope with the disease. The twinning should contribute to the personal development of each person in order to feel good in everyday life.

  • Entraide (Mutual Aid)

As one of the cornerstones of the program, mutual aid allows participants to be listened to and to find the motivation they may need. This mutual support also encourages the development of participants’ autonomy.

  • Mouvement

The challenge is also to stay active and positive! That’s why the program encourages a variety of activities, as soon as the sanitary situation will allow it.

We will continue our friendship even after the project is over. It will be an added bonus in our lives as diagnoses to share our concerns, break the isolation and learn more about each other,” explains Pierrette, recently diagnosed and twinned with Francine.

How to participate?

It’ s easy to participate in the program! All you have to do is :

This form allows Parkinson Montreal-Laval to identify your profile, your needs and your interests. PML processes the requests, analyzes your needs and proposes a tandem.

  • Sign the commitment and consent form which can be downloaded by clicking here

At the end of the twinning, each participant agrees to contribute to the evaluation of the program.

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A daily rhythm with Parkinson’s

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.


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”.

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Photo Challenge – Beautiful pictures of solidarity

For International Parkinson’s Day, we launched a photo challenge on social networks!

How to participate? Post a photo of tulips on Facebook or Instagram with the hashtag #FlowerHope and tagging the Parkinson’s Montreal-Laval account. Photos can also be sent to communicationspml@parkinsonquebec.ca.

When? From April 11 to 30, 2021

On April 30, a winner will be chosen to receive a bouquet of tulips and his or her photo will be used in the 2022 campaign.

Take your pictures!

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Keep moving project: a great team work!

Several partners came together to develop the Keep moving! project, which resulted in a flyer to encourage physical activity for people living with Parkinson’s disease.

With the current sanitary context, this project remains more relevant than ever!

Thank you to our 4 partners: Parkinson en mouvement, NeuroMotrix, Kinatex Sport physio Rockland et le Centre national de danse thérapie des Grands Ballets Canadiens.

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Twinning project: learning and sharing

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.

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Together, let’s flower hope with the donation of virtual tulips!

Buds blooming, positive temperatures and longer days, etc., if April usually announces the beginning of spring, it is also the month of Parkinson’s disease awareness. An opportunity to cultivate solidarity and to flower, together, hope through the donation of virtual tulips.

Tremors, muscular rigidity, slowness of movements, etc., some symptoms are known, but many aspects of this neurodegenerative disease remain unfortunately unknown. Indeed, behind this multi-faceted disease, there are also, and most importantly, people who have to deal with the disruption of their daily lives. In the Montreal-Laval region, no less than 10,000 people, and as many caregivers, live with the disease.

Together, let’s #FlowerHope with the donation of tulips

To continue to provide them with the services, advice and support they need, Parkinson’s Montreal-Laval is launching #FlowerHope, its virtual tulip donation campaign, on April 1. As was the case last year, due to the current sanitary context, this key campaign for all those affected is back with an adapted formula: from April 1 to 30, 2021, people are invited to donate virtual tulips on the CanadaHelps.org platform by choosing the “Virtual Tulips” tab.

Although the present period is complicated for everyone, it is particularly so for people living with Parkinson’s disease for whom isolation and lack of physical activity can have negative effects on the evolution of the disease. It is therefore essential to be able to maintain activities and continue to support them. So if you can, please donate virtual tulips so that together we can make hope bloom.

Flourishing activities

If the health crisis has somewhat modified the way of doing things, it has luckily not had any impact on the services offered. The month of April will therefore be an opportunity to continue to offer a variety of activities remotely.

In addition to this, Parkinson Montreal-Laval’s recurring activities include support groups, Practice Your Voice workshops, personalized follow-up, etc., as well as a new series of meditation workshops.

Inspiring stories

Throughout the year Parkinson Montreal-Laval has the privilege to meet, support, exchange and share with people living with the disease, caregivers, professionals… All these people are a real strength and a true source of inspiration. In this month of awareness, Parkinson Montreal-Laval wishes to honor them by publishing a story each week. To discover them, stay tuned! They will be available on our website and social networks:

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Recent diagnosis – Individualized meeting for diagnosed persons and their relatives

Have you just learned that Parkinson’s disease will now be part of your life?

Many questions running through your mind?

  • How to preserve your quality of life?
  • How to look to the future?
  • How to better face this disease?

And given all this, where to start?

It is perfectly normal to have questions and concerns. To support you as a person living with Parkinson’s disease or as a relative, Parkinson Montreal-Laval offers you a meeting during which you can get information on the disease and raise your questions, share your fears, then be comforted and advised. The objective is also to offer you resources that will help you deal with the disease on a daily basis.

For more information or to make an appointement, contact us by e-mail montreal-laval@parkinsonquebec.ca or by phone 514.868.0597.

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Let’s move! Benefit from our Respite and Exercise Service

We know that as a caregiver it is not always easy to free up time to participate in some of our activities. Difficult, indeed, to leave his or her loved one alone during this time. This is the reason why, we offer you the Respite and Exercise service with our partner NeuroMotrix. How does it work? When a caregiver participates in one of the activities offered by Parkinson Montreal-Laval (self-help group, conference, telephone follow-up, etc.), the loved one can benefit from a free home exercise session with one of NeuroMotrix’s kinesiologists.

Thought for the well-being of both the caregiver and his or her loved one, this service allows:

  • Caregivers to participate peacefully in our activities and benefit from the support and guidance they need;
  • Loved ones to practice physical exercise, an essential element in maintaining their autonomy and improving their quality of life. In fact, physical activity has many advantages for the treatment of Parkinson’s disease: improvement of muscle flexibility, coordination, balance, decreased fatigability, reduced stress and much more.

Do not hesitate! If you would like to benefit from this service or if you have any questions, you can contact Janie Guénette by email montreal-laval@parkinsonquebec.ca or by phone 514-868-0597, ext. 1.


About NeuroMotrix

NeuroMotrix is made up of a team of kinesiologists and scientific experts specialized in neurological disorders and the science of aging. Our expertise is adapted physical activity and our mission is to enhance the quality of life of people living with neurological disorders such as Parkinson’s disease.

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Espanol

Spanish conversation course for people living with Parkinson’s

Parkinson Montréal-Laval is delighted to be able to offer a free conversational Spanish course. This is being done thanks to the initiative of Mr. Edmer Calero del Mar.

 This course is specifically for people who have Parkinson’s disease and will be given by a professor who lives with the disease. The course is for beginning and intermediate students. The course objective is to help fight difficulties with elocution and isolation that people with Parkinson’s suffer from. This conversational Spanish course has been designed for people living with Parkinson’s and will focus on oral expression and pronunciation. The course will have an emphasis on interaction, exchanges of knowledge and experiences supported by written pedagogical materials, photographs and soundtracks. Basic linguistic tools for oral presentation will be used during the first classes and repeated as often as necessary. 

Thursdays from 2 to 3:30 PM, Parkinson Montréal offices located at 560 rue Ontario East, Montréal, H2L 0B6. 

Registration required: montreal-laval@parkinsonquebec.ca or call 514-868-0597

A minimum of five people must be registered for the course to take place. 

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Showing off their dance moves

Update on COVID-19 : Parkinson Montréal-Laval Activities

Afin de contribuer à l’effort collectif visant à prévenir la propagation du Coronavirus, nous sommes dans l’obligation de suspendre la majorité de nos activités. Toutefois, notre service téléphonique est maintenu. N’hésitez pas à communiquer avec nous au 514 868-0597.

Update on services and activities Activities for caregivers Psychosocial support by telephone – no change

Isolation brings with it many challenges, particularly when we are caregivers. This is why we continue to offer psychosocial support via telephone. Do not hesitate to call us if you need help.

To make an appointment with Sophie Lecours :
soutienpml@parkinsonquebec.ca 

To make an appointment with Élisabeth Lapointe :
soutienpmllaval@parkinsonquebec.ca
Support groups for caregivers – ongoing

Participants will be contacted so they can organize into small groups that will communicate via videoconference. It’s never too late to join one of the groups!

To enroll, contact Élisabeth Lapointe : soutienpmllaval@parkinsonquebec.ca 

Training workshop for caregivers – temporarily suspended 

The third and last workshop in the series has been temporarily suspended. A new date will be announced soon. Check this space for an update!

Activities for people with Parkinson’s

Get-togethers for newly diagnosed patients – no change 

The information meetings for people recently diagnosed will be offered by videoconference. 

To make an appointment call or email:  514 868-0597 montreal-laval@parkinsonquebec.ca 

Support groups for people living with Parkinson’s – temporarily suspended 
Keep checking this space for new dates. 

Spanish classes – temporarily suspended 
Keep checking this space for the new dates. 

Pratice your voice – temporarily suspended 
Keep checking this space for new dates.

Other activities

Parkinson Montréal-Laval Conferences – temporarily suspended 
All scheduled conferences have been postponed. More information l be transmitted in the coming weeks. 

Volunteer recognition night – postponed.
The event on March 24 will be postponed, check our information bulletins for the new date. 

Annual assembly – postponed
Our AGA will also be postponed and a new date will be announced in one of our upcoming newsletters. 

Swing Dance evening organized by Parkinson en mouvement – cancelled.
The Swing Dance Evening originally planned for April 2 and organized by Parkinson en mouvement, has been cancelled. 

Annual tulip sale – ongoing but virtually!
No sales of real tulips will be organized this year. However, supporters can purchase virtual tulips by clicking here and choosing the option » Virtual tulip »

Useful resources in difficult time

Numerous measures have been quickly put in place to assist all that may need them. Below is a nonexhaustive list of many resources, both telephone and online which are available to the public for free:
Government of Québec coronavirus information line: 1 877 644-4545 
Call this number if you are worried about COVID-19 or if you have symptoms such as a cough or a fever. 

211 grand Montréal.
Call 211 or visit the website 211qc.ca This multilingual reference service is helpful for finding out about community and social services in greater Montréal. 

Service Info-Aidant: Call 1 855 852-7784
Info-aidant is a telephone listing service, a place to get information and professional references all confidential and all free. It is aimed towards caregivers working with the elderly, interveners and health professionals.

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