April is Parkinson鈥檚 Awareness Month, a time to recognize a disease that affects more than 100,000 Canadians. The Neuro鈥檚 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鈥檚 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鈥檚 Brains Need campaign.
What does Parkinson鈥檚 Awareness Month mean for you?
April being recognized as Parkinson鈥檚 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鈥檚 doesn鈥檛 define me. What I mean is that I am not at the mercy of Parkinson鈥檚. Although Parkinson鈥檚 can be challenging at times, Parkinson鈥檚 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鈥檚 disease that you would like people to know?
First of all, there are several myths regarding Parkinson鈥檚. I would like the general population to know that Parkinson鈥檚 isn鈥檛 just an old aged disease. Young people can also be afflicted! Another common myth is that in Parkinson鈥檚, 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鈥檚 symptoms are only 鈥渕otor鈥�, whereas in fact, Parkinson鈥檚 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鈥檚 case is unique and the rate of progression varies between patients.
Lastly, I would like to dispel the myth that Parkinson鈥檚 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: 鈥溾��. I have over 15,800 members whom have Parkinson鈥檚 and caregivers. My main purpose was to create a safe, online support group where people with Parkinson鈥檚 could communicate about their journey with the disease. My second goal was to share reliable, informative content about Parkinson鈥檚, 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鈥檚 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鈥檚 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鈥檚 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鈥檚 is desperately needed and innovative, targeted treatments need to be developed to slow or stop the neurodegenerative process involved in Parkinson鈥檚. Such advancements would offer hope and a better outcome for Parkinson鈥檚 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鈥檚 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鈥檚 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鈥檇 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.
