An interview with Jeannine Alain: Finding Something I Can Do for Others on March 29, 2024.
Biography
I’m 65-year-old Canadian who lives in Saskatoon, SK. I grew up on a farm and was diagnosed with PD 9 years ago.
Can you tell me more about your organization?
I lead the Saskatoon Parkinson’s support group. It’s not really an organization per se but we do have many folks who rely on us for information and social support.
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
I suppose my passion would be helping newly diagnosed people realize that our diagnosis isn’t as traumatic as it first seems when we hear that we have PD. That’s how it felt to me.
What type of goals do individuals with Parkinson’s have when working with you?
I suppose it would be normalizing the symptoms and difficulties they cause one in daily life. Support groups help people feel that they’re not the only one going through these hardships.
What type of training and how long are the programs?
Facilitators of support groups across Canada were trained by Parkinson Canada. They offer us ongoing training and support.
What effect can it have on an individual with Parkinson’s?
Everyone in the group is happy they found us and say their anxiety has dropped since being in a group atmosphere; not going it on their own.
What would you like to see as a future goal for your programs?
I think our group will grow what with the increased rate of diagnoses…I hope that we can continue to give support to the burgeoning number.
What events do you participate in?
We have monthly meetings including two potluck dinner/parties during the year. We also participate in the annual fundraiser for PD Canada – SuperWalk.
How does this also assist the caregivers?
This adds in the emotional support for people living with PD and their care partners. At each meeting, we split into PwPs and care partner discussions; the latter find this invaluable.
How can someone get in touch? What is your website?
We don’t have a website but can be searched for on FaceBook.
How can others also become advocates for awareness?
With the progressive aspect of PD, newer members are often asked to come on board the executive so that the work can be shared.
Perhaps, how many people with Parkinson’s does your group reach out to?
We have 160 people receiving our emails. Approximately, 40 to 50 are active members, meaning they attend our meetings in person.
In your opinion what is the key to effective advocacy?
I suppose that would be maximizing your listening audience. Also, letting the general public how the rate of diagnosis means that more people they know well might be soon affected; even themselves.
How can we better fundraise to support a cure for Parkinson’s?
That’s a tough one since people are tapped out for donations. More diagnoses will lead to
greater donations perhaps.
What other activities do you undertake to help improve and support your daily living Eg exercise and alternative remedies?
I use CBD oil for sleep and supplements to boost brain and gut health but the main therapy I use is exercise. Daily, I do a fitness class, an interval walk or participate in a singalong or RockSteady Boxing.
Why should people who don’t have Parkinson’s care about this?
As I say to my family and friends, ‘I may be the only one you know with PD but before long there will be more added to the list.’
Have you had any family members or relatives affected by Parkinson’s disease?
Thus far, I’m the only one to be diagnosed.
If you had one song that would tell us more about you or represent your life, which song would it be?
I guess ‘Always Look on the Bright Side of Life’ would be appropriate. I’m sure there are others but that’s the one coming to mind.
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
Make the most of what you’re dealing with – what’s the alternative?