(705) 444-7824

Living Better With Parkinson's

A QUALITY OF LIFE ENHANCEMENT MISSION:

Did you know that in North America 1.5% to 2% of the population over 60 years old will suffer from Parkinson’s Disease? More than Multiple Sclerosis, Muscular Dystrophy, and ALS combined? The South Georgian Bay (SGB) population is growing rapidly and its demographics are aging as it grows. In this decade, Persons with Parkinson’s (PWP) in SGB will at least double! 

A group of concerned SGB residents recognized this reality and decided to do something about it. The result, the Living Better with Parkinson’s program. Co-founders Larry Hall and Jim Karn gathered a group of stakeholders, some with Parkinson’s, others were PWP spouses, and there were others just willing to help! The goal of Living Better was, and is today:

  • To raise the awareness of knowledge of PD within the medical, health support and family communities to achieve early and accurate diagnosis of this difficult to diagnose disease.
  • To develop and implement SGB based non-invasive lifestyle and fitness treatment programs, both proven to improve the quality of life for people with Parkinson’s.

GETTING STARTED

The team at the Collingwood Squash & Fitness Centre embraced the Challenge. Larry Hall became the Co-Chair of Living Better with PWP Jim Karn and The Centre provided facilities, personal trainers and program development and financial management advice. The first challenge was raising $35,000 to run a pilot Sensory Attention Focused Exercise (SAFEx) fitness program – the first run outside of a clinical setting (Laurier University’s Movement Disorders and Rehabilitation Centre). In the Fall of 2019, fifteen people with Parkinson’s participated at The Centre in a 13 week / 3x per week PD specific fitness program. Clinical trials have proven that PD SAFEx participants, whether or not they are using Parkinson’s drugs, have reduced the symptoms and slowed the progression beyond traditional drug therapy and other exercise options. Results proved to be outstanding and helped demonstrate to Living Better the efficacy of a fitness approach to improve quality of life for PWP.

THE NEXT STEP

Living Better turned their attention to Community Awareness of PD. Team members met with the leaders of the Collingwood General and Marine Hospital / Rural Ontario Medical Program (ROMP) Navigator Research Program, to encourage them to assume the leadership for the Awareness challenge noted above. Navigator responded, applied for, and received a grant from the Hospital Foundation’s Wellness Innovation Fund early in 2020 to conduct the necessary research and to implement the required education and publicity program (Currently on Covid -19 induced hold)

THE LIVING BETTER NOT-FOR-PROFIT CORPORATION

Living Better decided to find best practices in community based PD support programs from which to learn. Polly Dawkins, the CEO of the superb PD support organisation, Colorado based Davis Phinney Foundation for Parkinson’s, recommended six programs, four in the USA and two in Canada. Our choice, to emulate, Victoria BC’s Parkinson’s Wellness Project. Key to its success was the creation of a donor friendly not-for-profit corporation. Armed with the Wellness Project’s documentation, Living Better is well along in its journey to create this new corporation. The leadership of Living Better will shift from The Centre to this new corporation. Ian Ross, an original member of Living Better, is leading the charge and will anchor the corporation with board members taken from the Collingwood Parkinson’s Support Group, the SGB medical community, local and Ontario based PD experts. New program development and fundraising will follow. In fact, world renowned concert pianist, Daniel Vnukowski, the Artistic Director of the Collingwood Music Festival, has agreed, in a post Covid-19 time, to return to Collingwood to perform “Rhapsody in Blue”.

 

HELP FROM THE CENTRE

Until the new Living Better with Parkinson’s Corporation is finalised, The Centre remains the focal point for Living Better programming. Visit the Centre to learn more about PD Community support programs, the Centre-based PD programs like Move Free (similar to Dancing with Parkinson’s), yoga and PD specific Personal Training. Our personal fitness trainer Teri Cooney has experience working with PWP.  The Centre will also refer people with Parkinson’s to the Collingwood Parkinson’s Support Group and other care organizations in South Georgian Bay and beyond.

To find out more about “Move Free” dance classes, email Louise Stewart-Potts 

For more info on personal training or yoga classes, email The Centre

Visit the Collingwood Parkinson’s Support Group

 

LEARN MORE

Three organizations provide superb support for people with PD and their families: Parkinson Canada, Michael J Fox Foundation for Parkinson’s , and Davis Phinney Foundation for Parkinson’s. 

Helpful resources:

Canadian Guideline for Parkinson Disease, 2nd Edition:

Care Partner Manual

Act On Time ™ – Managing My Parkinson’s Disease in Health Care Settings

Act On Time ™ – other resources

Plan to order Every Victory Counts “Essential Information and Inspiration for a Lifetime of Wellness with Parkinson’s Disease.”

 

Parkinson’s Resources

Parkinson Canada

Literature available and staff to talk to:

www.parkinson.ca  1-800-565-3000

info@parkinson.ca

Sandie Jones/Information & Referral Associate (personal contact)

sandie.jones@parkinson.ca

 

Local PD Support Groups 

Wasaga Beach: Visit website
2nd Thursday of the month @ 3:45 pm
2275 Klondike Park Rd, Wasaga Beach ON L9Z 2W9
Contact: info@parkinson.ca

Collingwood: Visit website
2nd Tuesday of the month 1:30 – 3:30 pm
Fung Loy Kok Taoist Tai Chi Centre
58 George St., Collingwood
Contact: Heather: 705-445-1623 hebsey@gmail.com

Exercise programs at The Centre

Tai Chi class, 5.30 pm on Mondays, 9.00 am on Thursdays

Yoga class, 9.30 am on Sunday mornings

Personal Fitness Training, contact us to find out more

Move free dance classes, contact Louise Stewart-Potts

Davis Phinney Foundation

Facebook
Videos, podcasts, supports & programs, Victory Summits, free resource book, Growling Beaver fundraiser here in Collingwood

Link for resource book Every Victory Counts

Books: Always Looking Up, Michael J. Fox
Brain Storms, Jon Palfreman
Say That Again, Jane Cullen

Speech therapist

Toni Blanchard, Collingwood Speech Therapy: 705-441-6691 Visit website

Additional exercise programs

VON SMART exercise program: Nicole Loudran 705-355-2200 Visit website

Sarah Robichaud’s Dance With Parkinson’s online classes via Zoom offered daily. Just register and they are free.  

Michael J. Fox Foundation

Michael J. Fox Foundation Facebook (Videos, podcasts, research, advocacy updates)

Fox Insight
(Patient-based online clinical studies)

The Georgian Bay Family Health Team

(705-444-5885) consists of family doctors, social workers, physiotherapists, occupational therapists and psychotherapists to name a few. If your family doctor is a member of this team he or she can make a referral for any of these support services.

Physiotherapist, Occupational therapist, Social worker, Counselling, Kinesiologist, Psychotherapist, Speech therapy, Massage Therapy , Dr. Rasmay: sleep disorders, Dr. Barbara Connolly: neurologist/movement disorders specialist

(LSVT)

Lee Silverman voice training via Skype: four week program $500.Also the Lee Silverman BIG exercise program. 

Visit the LSVT website

“Parkinson’s doesn’t reach every part of my life, there are losses. But there are equivalent gains, whether it’s an insight or experience or exposure to people that I wouldn’t otherwise meet. I’ve been incredibly privileged to see progress being made.” – Michael J Fox