Care Partnering—A Love Story


image of couple
John and Margot
Milford Sound, South Island, New Zealand

“I wish you could meet my wife, Margot. We’ve been married for 34 years and—I
know I’m biased—she’s the most wonderful woman I’ve ever met.”

John Parkhurst knows all too well what
it means to be a care partner. His wife, Margot Bartlett, has lived with Parkinson’s for over
30 years. As a registered nurse, Margot thought she may have Parkinson’s. Still,
the day they heard the diagnosis was gut-wrenching. It felt like a loss that
could never be replaced. Margot was just 42 then. Their daughter was only four
years old.

Parkinson’s doesn’t just affect the
person diagnosed; it changes the lives of all those around them—spouses,
children, friends, and their caregivers.

Margot is the kind of person who’d get up bright and early, work all day as a
Registered Nurse, then teach piano until 9 or 10 at night. Her energy was

But as her Parkinson’s progressed it took
all of that away ­– and more.

John became her primary caregiver. It
shattered the hopes and dreams they shared for a life together. It set them on
a different path, and yet it never tore them apart.

“For me, being a caregiver is as
rewarding as it is challenging.”

From the day they met, Margot and John
have been a team. Since her diagnosis he has helped her have the best life she
can. Margot worked for 12 years after she was diagnosed. She’d often be tired
so John supported her, however he could. He ran the household and when she
travelled for work, John went with her. There were high out-of-pocket expenses
and his career certainly was affected. John often says it’s like switching over
to “alternate programming.” It’s not what he expected and it is still an

“We are a pretty good pair, but we wanted
to grow our ‘care team.’ We began a Parkinson’s Support Group, which continues
to this day. As a caregiver it’s really important that you have a network of
people you can call upon for practical help and moral support. Sometimes, when
Margot isn’t doing well, I just need someone else to talk to so I can find my
hope again,” says John.

Their lives were enriched when they found
Parkinson Canada. Both Margot and John have served on the Parkinson Canada
Board of Directors.  Drawing on their
lived experience, John has been a strong advocate for caregivers, and that’s
why he is delighted with the release of the new publication, Care Partnering: Managing Parkinson’s
Disease Together,
a book made possible through the generous support of
donors across Canada.

This practical, insightful book is an
invaluable resource. It delivers supportive, accurate information to
caregivers, and references to other resources that are a big help when
navigating a Parkinson’s journey. John sincerely wishes there was something like
it back when Margot was first diagnosed.

Life as a caregiver can be gratifying, and
it’s very important to take care of you, too.

“I’m lucky. Margot is very supportive and
makes sure I have a life outside caregiving. In the summer I sail with our daughter.
I also love photography and music—even if I spend just five minutes a day
playing guitar or ukulele I find it improves my mindset.”

John knows every day is a gift, and with
it comes new research, new treatments and therapies that are making life better
for people living with Parkinson’s. Donor generosity helps Parkinson Canada
fund incredible research so one day, there will be a cure and no one will have
to switch to “alternate programming.”

For your complimentary copy of Care Partnering: Managing Parkinson’s
Disease Together
, email or call 1 800 565

To watch video clips from the Care Partner Summit held in May 2019, read Parkinson Canada Hosts Care Partner Summit

We are here to help—no matter what.

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