A person’s life story changes after a diagnosis of Parkinson’s. There
begins a chapter of collaboration in care. Whether you are caring with or for a person living with Parkinson’s, it is certain to involve you
more and more over time and increase your understanding of the experience of
another person.

Caregiving
is a part of the societal fabric of most cultures. You may have witnessed
others taking care of people in your family and community. Care partnering is
often adopted and learned based on a change in life circumstances by those who
face illness or injury. And you may or may not be prepared. Having the
knowledge, practicing the skills and using the tools available to you, will
help.

Parkinson Canada’s first ever Care Partner Summit was a day dedicated
entirely to educate and support care partners, and recognize the vital role
they play for people with Parkinson’s. Over 80 care partners attended, thanks
to the generosity of Parkinson Canada donors. The format provided the
opportunity to connect with each other, assess their personal situations and
learn from several guest speakers.

Participants were provided with valuable tools, tips and
resources to use daily at home. The interactive day focused on collaborative
care partnering to improve quality of life, both for the care recipient and for
the care partner.

“Parkinson’s affects each person in a different way, so there is no ‘one-size-fits-all’
approach to caregiving. This makes it hard to define the role,” says Grace Ferrari, Senior Manager,
Education and Support, Parkinson Canada. “And the disease and needs of a person
with Parkinson’s changes over time, so there is no single approach for every
care partner.”

The feedback from care partners who attended was both touching and
rewarding.

“No
words!!! Thank you so much for extending the invitation to attend today’s
conference.”

“As the
day progressed attendees became more involved and more comfortable sharing
their stories, questions and experiences as care givers.”

“There
were tears, there was a sense of community and healing. There was a revelation
for many that help and support are available. On my way back to Brockville
tomorrow. Lots of information to share with my sister. Thank you so much.”

“Wonderful
organization! Such a high-level of compassion and knowledge!”

“Very
good day. Keep doing them, we need it!”

“Wanted
to let you know that today was a watershed day for me.”

“It opened the door to the biggest problem we all face … ‘The Elephant in the Room. »

Expert presenters and their sessions included:

Neli Gontier is the Education & Training Specialist for Parkinson Canada.  As lead developer of several educational resources, including the ACT on Time™ program and the newly released Care Partnering: Managing Parkinson’s Disease Together book, Neli’s presentation focused on better understanding the care partner experience; identifying the emotional, physical and psychosocial needs; assessing the burden that care partners/caregivers live with; and, learning to prepare an effective Self-Care Plan. This hands-on presentation was enhanced with a free copy of the Care Partnering book, which contains resources lists for national, provincial and territorial sources; tip Sheets; worksheets; information on Parkinson Canada’s ACT on Time^™Program and Care Partner Inspirations.

Dr. Adriana Schnall, MSW, PhD, is the Manager and Professional Practice Chief for Social Work at Baycrest.  Adriana brought her 25 years of clinical experience working with older adults and their families including outpatient community services, long-term care and inpatient services to the keen audience. Her presentation identified the carer, caregiver, care partner, family, friend, and the stages of caregiving. She discussed the stresses that caregivers experience and how to identify them; and, provided strategies for coping with the challenges of providing care to someone with a long-term, chronic illness.

Jane Teasdale is well known for developing awareness of home and health care issues in the community and for encouraging collaboration between public health, for profit and not for profit service providers in Ontario’s Greater Toronto Area.  She is the founder of Mosaic Home Care & Community Resource Centres which offers a person centered community integrated model of care that is unique to the homecare industry.  Jane’s presentation focused on person-centered care outside of the clinical or medical frame.  It explored the importance of meaningful conversations, social networks and strong communities for social and emotional well-being and how to address isolation and loneliness.

“The Summit provides care partners with information, tools and tips to help them work through their challenges and successfully manage the care partner – care recipient relationship,” adds Ferrari.

Care Partnering: Managing
Parkinson’s Disease Together is a
book dedicated to care partners. To order your complimentary copy,
contact education@parkinson.ca

Missed the Summit? Here’s some helpful information for care partners or contact us—

1 800 565 3000.

We
are here to help.