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The Parkinsons Update – Issue 65

The Parkinsons Update (Issue 65) has just been mailed.  Read your edition of The Parkinsons Update and find out about all the exciting activities planned for 2017.

The Parkinsons Update – Issue 65

Aware in Care Webinar – March 29

Aware in Care kits

Volunteer of the Year (deadline for applications – March 30)

Understanding Dementia Workshops

Parkinsons Medical Reception – April 11

AGM & Volunteer Appreciation – April 29

Spring Regional Parkinsons Conference – May 13

Medical Marijuana Webinar – June 14

CarePartner Workshop (Cambridge) – June 21

WALK-IT for Parkinsons – September 9, 10 & 17

Living with Parkinsons: Is There an App for That? Webinar – September 20

CarePartner Workshop (Windsor) – October 18

Communication in Parkinsons Webinar – December 13

If you would like further information or to be added to our mailing list, call 1-888-851-7376 or email [email protected].

Thank You for Joining the Movement at WALK-IT for Parkinson’s

We asked you to join the movement – The 1,000,000 Step Challenge – and you did! Every step counts in the fight against Parkinson’s, so we counted every single step you took.  With over 1,400 walkers participating, 4,612,734 steps were taken!  We encourage you to continue the momentum by setting a daily step goal and using your pedometer to help you reach it.

 

Thanks to all the WALK-IT for Parkinson’s walkers, volunteers, donors and sponsors for all your support in helping to raise over $332,000 … and counting!  Your support means that Parkinson Society Southwestern Ontario can invest funds in vital Parkinson’s programs and research to help improve the quality of life for people living with Parkinson’s in our community.

 

TOP TEAMS

Team Parker $              16,038
London Groupies $              10,268
Renaud’s Raiders $                 7,458
Kawagama $                 6,439
Team Stammler $                 6,222
Scotts’ Movers & Shakers $                 4,235
Sandman Shuffle $                 3,800
Hyatt Family $                 3,655
We Will WALK You! $                 3,580
Pat’s Pack $                 3,460

 

TOP WALKERS

Clare Poechman $  12,910
Beverley Zaifman $   8,226
Barry Parker $   7,295
Stuart Selby $   6,369
Mary Vernon $   6,025
Joe Renaud $   5,795
Tom Pistore $   5,668
William Rea $   5,513
Avril Hickson $   3,955
Scott Dunbar $   3,329
Roger Dallaire $   3,325
Joe Stammler $   3,137
Bev Plume $   3,016
Carolyn Young $   2,925
Ken Amos $   2,835
Jerrold Beech $   2,815
Robert Cotie $   2,700
George Werezak $   2,625
Judi Stevens $   2,611
Maria Price $   2,600

Celebrating Success!

Thank you to all our sponsors, participants, donors and volunteers for making the 2016 Spring/Summer events a success!

Click here to see pictures from the spring/summer events in our NEW GALLERY.

Please make sure to support our supporters:

Cut-A-Thon for Parkinson’s – London:
Chez Cheveux
Elle Reve Salon
Maria Bikas Salon
Melo Hair & Beauty Bar
N U Hair & Make Up Studio
Nova Vita Hair Studio & Esthetics
Shampoo Planet
Side Street Salon Inc.
Studio H Artist Group
Wabi Sabi Hair Artistry
Wright Hair

Cut-A-Thon for Parkinson’s – Waterloo Region:
FAD Hair Studio
Oiseau Salon
OZ Hair and Skin
Studio 777 Hair & Make-UP Artistry
Voila – Sportsworld Location
Xcentric Salon

Cut-A-Thon for Parkinson’s – Windsor:
Antoine Greige Salon & Spa
Cabello Hair
Roots Hair Lounge

Cut-A-Thon for Parkinson’s Sponsors:
Lerner’s (London, Waterloo Region, Windsor)
HRT Insurance Consulting (London)
Corus Radio (London)
AM 800/CTV (Windsor)
Clair Hills Retirement Community (Waterloo Region)
Rogers Kitchener Radio (Waterloo Region)

Signatures – A Taste Test of London’s Best
Barakat Restaurant Downtown
BBQ Feast Catering
Bourbon Street Cajun and Creole Kitchen
Burrito Boyz
CHOP Steakhouse & Bar
Curry’s
DAVIDsTEA White Oaks Mall
Edible Arrangements
Fancy Tarts
Hey, Cupcake!
Hot Italian Sandwiches on Dundas
Icarus Resto Bar
Idlewyld Inn
Jack Astor’s Richmond Row
Littlewood Pie Co.
London Ice Cream Company
Milestones
Moxie’s Grill & Bar
North Moore Catering/The River Room Café & Private Dining
Olive R. Twists Food & Beverage House
Paramount Fine Foods
Pure Leaf Iced Tea (Pepsico Canada)
Qdoba Mexican Eats
Restaurant Ninety One
Simply Kept Caterings
Starbucks
Talbot Bar & Grille at Budweiser Gardens
Tony Roma’s North
Tony’s Famous Italian Restaurant
Western Fair District Catering Services
Wich is Wich
YOU Made It Café & Farm Boy
Zoup! Wellington Road

Signatures Sponsors:
Finch Auto Group
Dominion Lending Centres – Yvette Helwig
Ford Keast LLP
Investors Group
Mendes Law Firm
The Kent Group Marketing Services
Yurek Home Healthcare Ltd
Leanne Beattie, CIM, FCSI, Franklin Templeton
POI Business Interiors
Preferred Insurance
Rival Office Solutions
Fresh Radio

7th Annual Parkinson Golf Classic Presented by Rembrandt Homes
Acura West
Allied Construction
Auburn Developments
Bluestone Properties
Callon Dietz
Carpet Department
Carstar
Castell Homes
CBRE
Cohen Highley
Development Engineering
DLS Electric (London) Inc.
Domus Developments
Drewlo Holdings
G T Tires
Graystone Homes
Giant Tiger
Investor’s Group London-Bluewater
Jack 102.3 FM
London City Chrysler
London Honda
Marcus & Associates- Hoare Dalton
May-McConville
Old Oak Properties
Oliver and Associates Power Team
Preferred Insurance
Rembrandt
Roestenberg Welding
Saratoga Homes
Sifton Properties
Sloan Stone Design
Southside Construction Mgmt Ltd
Sterling Karamar Property Mgmt
TD Canada Trust
Ted Velikonja CIBC Wood Gundy
The Ironstone Building Co Inc
Turnay Electric
Westhaven Homes
Under the Volcano
Yurek Pharmacy
Zaifman Family

HollisWealth Charity Golf Classic
AGF Management Ltd
Anne Kinzie – Kinzie Financial Services
Cardy Winters & Simon
CI Investments
Dynamic Mutual Funds
Fidelity Investments
HollisWealth/Scotiabank Global Wealth & Insurance
Invesco
JD Industries
Kuntz Electroplating
Larry Simpson
Mackenzie Investments
Manulife
National Bank Investments
Sentry
TD Asset Management
Triumph Tool Ltd

New Look – Renewed Hope – NEW WALK

Be part of the excitement – get involved in WALK-IT for Parkinson’s this September!

WALK-IT for Parkinson’s is Parkinson Society Southwestern Ontario’s newest walk to help those living with Parkinson’s in Southwestern Ontario. Bring your family and friends and be part of this exciting event – Every Step Counts!

Effective December 31, 2015, The Parkinson Canada Federation was dissolved, and as a result, Parkinson Society Southwestern Ontario is no longer affiliated with Parkinson Canada. This change means that every dollar raised in Southwestern Ontario will stay in Southwestern Ontario. Funds raised at WALK-IT for Parkinson’s will go to support local services, education, advocacy and research. This event will replace the Parkinson SuperWalk in Southwestern Ontario. With all these changes, it is the perfect time to launch our own new walk.

When?
This September 10th, 11th and 18th our inaugural WALK-IT for Parkinson’s will take place in 13 locations throughout Southwestern Ontario.

Why?
Regular physical activity can help slow the progression of Parkinson’s symptoms, so let’s help the Parkinson community in Southwestern Ontario keep active. Join the movement and take the 1,000,000 Step Challenge by participating in WALK-IT for Parkinson’s.

How?
Step 1: Register
Step 2: Raise Funds
Step 3: Wear a Free Pedometer

Get involved and accept the challenge by registering as a walker, becoming a team captain, joining a team, pledging a walker, volunteering at your local walk or making a donation. Join the movement for physical activity and be a part of WALK-IT for Parkinson’s this September!

Register today at: www.walk-it.ca

For information on times and walk locations, go to www.walk-it.ca.

WALK-IT_tagline-image

New Look – Renewed Hope!

Effective December 31, 2015, The Parkinson Canada Federation was dissolved, and as a result, Parkinson Society Southwestern Ontario is no longer affiliated with Parkinson Society Canada. This change means that every dollar raised in Southwestern Ontario will stay in Southwestern Ontario. We will remain the same local, independent organization committed to a spirit of collaboration and partnerships.

We appreciate your continued support. With your assistance and our focus on the delivery of local programs and services, we will service a larger number of people living with Parkinson’s, their families and caregivers in Southwestern Ontario.

Parkinson Society Southwestern Ontario continues to be the leading and most trusted organization for people living with Parkinson’s in Southwestern Ontario. We look forward to assisting our local Parkinson’s community in 2016 as we focus our efforts on sustaining and expanding services for those affected by Parkinson’s.

If you have any questions, please do not hesitate to contact Shelley Rivard, CEO, at [email protected] or 1-888-851-7376.

Top Teams and Walkers

Thank you to everyone that participated in our walk last September!

TOP TEAMS:
Team Parker (London and District) $23,785
Renaud’s Raiders (Windsor-Essex) $7,475
Kawagama (Orangeville and Area) $6,808
Team Stammler (Windsor-Essex) $6,632
London Groupies (London and District) $5,740
Saugeen Strollers (Kincardine) $4,415
Scott’s Movers and Shakers (Stratford and Area) $4,346
Howard Bast Team (Waterloo Region) $4,190
r u ready (Orangeville and Area) $4,075
Stewies Shakers (Brant-Norfolk) $4,054

TOP WALKERS:

Raised $10,000+
Clare Poechman (South Grey, Bruce and Hanover)

Raised $5,000 – $9,999
Kent Dixon (Brant-Norfolk)
Barry Parker (London and District)
Tom Pistore (London and District)
William Rea (Orangeville)
Joe Renaud (Windsor-Essex)
Stuart Selby (Windsor-Essex)
Daniel St. Onge (Waterloo Region)
Mary Vernon (London and District)

Raised $2,500 – $4,999
Howard Bast (Waterloo Region)
Joy Blackburn (Orangeville)
Nancy Blaney (London and District)
Robert Cotie (Kincardine)
Scott Dunbar (Stratford and Area)
Mike Knott (Chatham-Kent)
Jim Piggott (Oxford County)
Maria Price (Windsor-Essex)
Joe Stammler (Windsor-Essex)
William Schafer (Stratford and Area)
George Werezak (Sarnia-Lambton)

Raised $1,000 – $2,499
Ken Amos (Sarnia-Lambton)
Lucas Anderson (Sarnia-Lambton)
Kathleen Antaya (Windsor-Essex)
Jerrold Beech (South Grey, Bruce and Hanover)
Mike & Nancy Berry (Sarnia-Lambton)
Connie Birmingham (Stratford and Area)
Annette Bradbury (Brant-Norfolk)
Karen Braithwaite (Owen Sound)
William Brennan (London and District)
Gary Burton (London and District)
Carl Chute (London and District)
Leah Coulthart-Howe (Kincardine)
Gary Dale (Kincardine)
Roger Dallaire (Sarnia-Lambton)
Sue Dunseith (Stratford and Area)
Brenda Ecclestone (Orangeville)
Robert Ecclestone (Orangeville)
Marilyn Elford (London and District)
Nick Fatouros (London and District)
Raegan Fatouros (London and District)
William Gard (Stratford and Area)
Mary Ellen Garner (Oxford County)
David Gilbert (Waterloo Region)
Avril Hickson (London and District)
DJ Hillier (Sarnia-Lambton)
Jessie Hillier (Sarnia-Lambton)
Kimberly Hogan (Stratford and Area)
Clara Howe (Kincardine)
Lorne Hyatt (Sarnia-Lambton)
Sanford Kuepfer (Stratford and Area)
Laura Lampkin (London and District)
Chris Maciejowski (London and District)
Sara & Hannah McPherson (Brant-Norfolk)
Bonnie Moore (Sarnia-Lambton)
Dave & Helen Moran – Craigie (South Grey, Bruce and Hanover)
Bill Moses (Owen Sound)
Anne Neill (London and District)
Christie Newman (Windsor-Essex)
Melora Parker-Pistore (London and District)
Bev Plume (South Grey, Bruce and Hanover)
Maria Price (Windsor-Essex)
Norah Rae (Waterloo Region)
Charles Ryde (Stratford and Area)
Sam Sanfilippo (London and District)
Alan Scott (Stratford and Area)
Diana Shelestynsky (Stratford and Area)
Ian Shouldice (Sarnia-Lambton)
Colleen Sim (Sarnia-Lambton)
Stan Soterlos (Windsor-Essex)
Crystal & Herb Stammler (Windsor-Essex)
Katie Stammler (Windsor-Essex)
John Stewart (Brant-Norfolk)
Stephanie Szusz (Waterloo Region)
Jamie Tolton (South Grey, Bruce and Hanover)
Gunne Weber (Kincardine)
Otto Weber (Stratford and Area)
Lynn Werkmeister (South Grey, Bruce and Hanover)
JoAnn Wolfs (London and District)
Carolyn Young (Sarnia-Lambton)

New documentary maps Andy Barrie’s life with Parkinson’s

It is, as they say a “small film.”

Just 13-and-a-half minutes long. But since the documentary The Voice was posted online this past weekend, it’s already having a big impact.  It has been shared on social media hundreds of times.

The film chronicles the before-and-after story of former CBC Radio host Andy Barrie. He sat behind the microphone at Toronto’s Metro Morning radio show for nearly 15 years.  Barrie retired in 2010 after being diagnosed with Parkinson’s Disease.

Carol Off invited Barrie and filmmaker Lana Šlezić into the As It Happens studio to discuss the film and his life with Parkinson’s.

“Andy, to see you in wearing headphones, in a studio behind a mic, that is a wondrous thing,” Carol says to open the interview.

As a life-long communicator, Barrie says one of the most difficult aspects of Parkinson’s early on was losing confidence in his ability to connect with people.

“Neuromuscular disease effects all the muscles in the body, including the muscles in the face. And I didn’t feel like I could communicate any longer with my face; letting someone know that I believe them or don’t believe them, I couldn’t do that anymore. People would just see this rigid face. And that was very confusing to me, having depended so long on that mode of communication.”

Barrie says he withdrew. He also lost his wife and his brother. He moved out of Toronto, into a farmhouse north of the city where he lived alone.

And then he decided to undergo a pioneering treatment called Deep Brain Stimulation or DBS. It has improved the lives of many people with Parkinson’s. And it changed Barrie’s life.

“It suppressed most of the Parkinson’s symptoms. My face would relax, my arms would relax. The tremor would stop. I’d stop doing all the gesticulating.”

Andy Barrie

A screengrab from The Voice, a documentary about former CBC Radio host Andy Barrie.

Šlezić’s documentary chronicles Mr. Barrie’s life before and after the treatment. One of the most moving moments was when he went to visit his daughter in New Mexico after she had a child. At first, Mr. Barrie was reluctant to have the filmmaker tag along, but it turned out to be very important.

“As it turned out, my daughter was very worried but she hadn’t raised it with me. She was worried about my Parkinson’s if I was carrying the baby, maybe I’d stumble, drop the baby on the floor. It’s not a small thing. And she was weeping when she told Lana that.”

In the end, Mr. Barrie is able to hold his grandchild.

You can watch Ms. Šlezić’s documentary, The Voice, here.

New booklet raises awareness of non-motor symptoms of Parkinson’s disease

When Keith Goobie was diagnosed with Parkinson’s disease (PD), he and his partner Roslyn Patrick did their homework to arm themselves with as much knowledge as possible about the movement disorder illness that they knew would increasingly become a challenge for Goobie.

The former IT manager had already experienced some stiffness and a tremor, but at work one day he was also struck with a “brain freeze” during which he found himself zoning out for two or three seconds at a time.
Because one of PD’s prime symptoms is a slowness of movement, the hands, legs, voice and face are often slowed and there is less spontaneity expressed – even in the face or the eyes.

“I found that even if I were quite interested in what someone was saying, my face would tell a different story because it showed no response,” says Goobie, who was diagnosed 18 months ago in his early 50s. “But that type of information was not talked about by my doctors. It was all about the shakes.”

“Essentially, the stereotype of PD is that it’s all about movement,” says Dr. Ron Postuma, a neurologist with the McGill University Health Centre in Montreal. “Although that’s true, the degenerative process occurs in many areas of the brain and in many ways. So although patients are aware of the motor aspects of the disease, they are not as aware of the non-motor symptoms or they don’t bring them up with their doctors because they don’t think they are related to PD.”

“These symptoms include the kind of brain freeze that Goobie noticed. But they may also include constipation, insomnia, loss of smell, nausea, restless leg syndrome, excessive sweating or build-up of saliva, cognitive impairment, and feeling light-headed when standing up. These non-motor symptoms are not experienced by every PD patient, but if and when they are, they often go unrecognized and untreated,” explains Postuma, who co-authored a free 50-page booklet on the subject.

This handbook, A Guide to the Non-Motor Symptoms of Parkinson’s Disease, is a joint project of Parkinson Society Canada and the Canadian Institutes of Health Research and is the first of its kind possibly in the world. It can be easily downloaded and includes a questionnaire checklist so people with PD can track what they are experiencing and take those notes with them the next time they visit their doctor.

“Many of the symptoms are only recently described,” says Postuma, who explained that much more is known now about PD.

“Now that the motor symptoms are better controlled, we see these other non-motor symptoms of which patients were not previously aware because they were so disabled from their motor symptoms. Also, patients today are living longer and better and as a result have been able to notice these things.”

Because non-motor symptoms have recently come to light, not every doctor would be aware of them. “To some doctors educated even 20 years ago, it was just the shaking disease. You need someone with a holistic view of the disease,” says Goobie, adding that the Parkinson Society has a list of recommended physicians. Tracking non-motor symptoms is important because today there are treatments available to help with almost every one of them.

“With PD a degenerative and progressive illness, so much is out of one’s control,” says Goobie’s partner Roslyn. “This booklet allows those experiencing issues with the non-motor aspects to have foresight. It alleviates additional stressors of having the symptoms either totally disregarded or marginalized.”

A Guide to Non-Motor Symptoms of Parkison’s Disease