April is Parkinson’s Awareness Month, a time to recognize a disease that affects more than 100,000 Canadians. The Neuro’s Movement Disorders Clinic provides exceptional care to about 2,000 PD patients, including Manon Day and Anne McIsaac. They spoke to us about the disease, their experience and what awareness means for them.
Manon Day
Manon Day was diagnosed with Parkinson’s disease (PD) in 2011 when she was 27, but the first symptoms appeared when she was 17. Since then she has become an advocate for PD patients, and part of The Neuro’s Brains Need campaign.
What does Parkinson’s Awareness Month mean for you?
April being recognized as Parkinson’s Awareness Month is important to me because there is a need to raise awareness about this misunderstood disease. As well, as a young patient, it allows me to have a better perspective on an emotional level: the fact that Parkinson’s doesn’t define me. What I mean is that I am not at the mercy of Parkinson’s. Although Parkinson’s can be challenging at times, Parkinson’s Awareness Month helps me to realize that nowadays , more and more young persons are suffering from this disease.
What are some misconceptions about people with Parkinson’s disease that you would like people to know?
First of all, there are several myths regarding Parkinson’s. I would like the general population to know that Parkinson’s isn’t just an old aged disease. Young people can also be afflicted! Another common myth is that in Parkinson’s, tremors always occur and that every patient has this symptom. The fact is that, like me, up to 30 per cent of patients are not affected by tremors.
A third false belief is that Parkinson’s symptoms are only “motor”, whereas in fact, Parkinson’s patients can experience bladder dysfunction, constipation, loss of smell, pain, speech and voice problems, sleep disturbances, orthostatic hypotension, anxiety, and small handwriting, among many others. Every Parkinson’s case is unique and the rate of progression varies between patients.
Lastly, I would like to dispel the myth that Parkinson’s is fatal. With a movement disorder specialist doctor and proper treatments and exercise, patients can have a good quality of life for many years to come!
You started a Facebook group for people with PD. Why did you do this? How is it going?
In 2017, I created a group on Facebook that has now moved to the social media site MeWe: “Everything about Parkinson’s disease”. I have over 15,800 members whom have Parkinson’s and caregivers. My main purpose was to create a safe, online support group where people with Parkinson’s could communicate about their journey with the disease. My second goal was to share reliable, informative content about Parkinson’s, to educate members and to offer advice if needed. Most importantly, I always recommend patients to ask their movement disorder specialist doctor regarding treatment options. Furthermore, my Parkinson’s support group is expanding quite rapidly because members of all ages or ethnicities feel comfortable to join my group.
What needs to happen in PD research and care for patients to lead better lives?
Parkinson’s is the fastest growing neurological disease. The number of new cases will go up dramatically in the future. More funds need to be allocated into medical research. Parkinson’s urgently needs the development of a diagnosis tool so patients could receive a diagnosis sooner. Some patients will sometimes receive their diagnosis when they are already in late stages. Also, more medical research involving the cause of Parkinson’s is desperately needed and innovative, targeted treatments need to be developed to slow or stop the neurodegenerative process involved in Parkinson’s. Such advancements would offer hope and a better outcome for Parkinson’s patients.
Anne McIsaac
Anne McIsaac was making a living advertising brands through social media before she was diagnosed with PD. It was her dream job, allowing her to travel to exotic locations and have amazing experiences, but the fatigue forced her give it up. Now she participates in research at The Neuro to help find better treatments for the disease.
What does Parkinson’s Month mean for you?
It means voices within the PD community are uniting to show off the courage of people with PD, thus raising interest in the general public towards the different ways PD affects their lives.
What are some misconceptions about people with Parkinson’s disease that you would like people to know?
Unsurprisingly, it would be nice to express the different motor and especially non-motor symptoms, and to explain that each case is very different from the next.
What needs to happen in PD research and care for patients to lead better lives?
I think much energy should be spent on pinpointing the exact cause(s) of PD. What exactly triggers the killing of the brain cells, and, perhaps, determine if every PD occurrence is indeed one and only one pathology.
Anything else you’d like to add?
It seems that pesticides are getting more and more bad press about their role in triggering the disease. It would make sense to use the research and go against the companies who pushed the use of such substances knowingly.
