TheParkinson’s Update - Parkinson Society … also have our Webinar Series providing education on a number of topics, including Living with Parkinson’s: Is There an App for That?

WALK-IT for Parkinson’s Keeping your donations in Southwestern Ontario

A Magazine for the Parkinson’s Community of Southwestern OntarioSUMMER/FALL

2017Issue 66 8 15 16Student Research

AwardsMental Health Common Myths

About Dementia

TheParkinson’sUpdate

2 The Parkinson’s Update

From TheCEO’s Desk

MISSION STATEMENT

BOARD

STAFF

Parkinson Society Southwestern Ontario is the voice of people living with Parkinson’s in SouthwesternOntario. Our purpose is to ease the burden and find a cure through support services, education, advocacy and research.

Brad Richards (President)Joseph Salamon (Treasurer and Secretary)Haad AsadAnthony BenderAlysia ChristiaenChris CurryCarol KraftDr. Michael RavenekBill ReaBev ZaifmanDr. Mandar Jog (Honorary)

Shelley Rivard CEO

Joanne Bernard Manager of Administration

Steve Hickson Coordinator of Special Events

Kaitlin Garbutt Coordinator, Programs and Services

Lisa Nixon Coordinator, Programs and Services

Vickie Thomas Coordinator of Volunteer Development & Administration

A special thanks to

for their significant contribution to this newsletter.

As I began writing this letter, I couldn’t help but think about how Parkinson Society Southwestern Ontario began in 1980 as just one local support group in London. The demands for information and support services from communities outside London had surpassed the London Chapter’s ability to meet the needs. Consequently, in 1997 we became the local office for Southwestern Ontario. With the help of many volunteers and supporters, we have grown from a small grassroots organization to where we are today - offering more local services than ever before.

Although many things have changed over the years, one thing remains the same: Parkinson Society Southwestern Ontario continues to fulfil its mission of being the LOCAL voice of people living with Parkinson’s in Southwestern Ontario through support services, education, advocacy and research.

We looked to those living with Parkinson’s and their families in our local communities to tell us what new supports were needed and then we began working to fulfil those needs. As a result, exciting new programs are evolving.

We now have two Rock Steady Boxing (RSB) programs led by certified trainers in Kitchener and London, with three more to begin this September. RSB is suitable for all ages and abilities. Current participants experience improvements in symptoms, general fitness, confidence and overall quality of life.

We also have our Webinar Series providing education on a number of topics, including Living with Parkinson’s: Is There an App for That? (September 20) and Communication in Parkinson’s (December 13). We launched the Aware in Care program in March through a webinar with Vaughn Edelson, Director of Education, National Parkinson Foundation. The webinar recording is available at parkinsonsociety.ca (see page 10 for information on Aware in Care).

On the research front, we awarded funds to three Graduate Students totaling $50,000 this past April at the Parkinson’s Medical Reception (see page 8). We are also providing a total of $37,000 in additional funding to Dr. Siyaram Pandey, University of Windsor and Dr. Quincy Almeida, Wilfrid Laurier University, to further their work in Parkinson’s research.

All of these initiatives and more are made possible thanks to our many donors, volunteers, sponsors and event participants who believe in supporting locally. Together we can make a difference in our community!

Sincerely,

Shelley Rivard

WALK-IT for Parkinson’s continues to be our largest fundraiser and funds

Parkinson’s services and research in Southwestern Ontario. We hope you, your family

and your friends will Join the Movement – Take the 5,000,000 Step Challenge by

participating in WALK-IT for Parkinson’s this September. Register online at

walk-it.ca or call our office at 1-888-851-7376 to see how you can get involved.

Front Cover Photo:Bev and Noa Zaifman walking in honour of husband/father Bernie.

3The Parkinson’s Update

See pages 22-23 for more information.

Regular physical activity can help slow the progression of Parkinson’s symptoms, so let’s help the Parkinson’s 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 this September.

WALK-IT for Parkinson’s provides the much needed funds for support services, education, advocacy and research. Walk and show your support for those affected by Parkinson’s. Help us reach our goal of 1,000,000 steps.

Participate:Participants can register as an individual or form a team. If you are unable to attend, please consider fundraising as a virtual walker and do your part in support of those living with Parkinson’s.

Form a Team:A team of family, friends and co-workers is a fun way to build camaraderie. Challenge each other in a healthy, competitive way – it makes a difference in the enjoyment of the event. Walk for a loved one and invite others to join you to help fight Parkinson’s.

Collect Pledges:Set a goal of raising $1,000. Parkinson Society Southwestern Ontario does not receive any government funding and relies on the support of our communities to be able to provide our programs and services to those in need. Online fundraising also available at www.walk-it.ca.

Volunteer:WALK-IT for Parkinson’s is a community based event. We are looking for volunteers to share their talents and help us run a great event. Call 1-888-851-7376 or email [email protected] to volunteer today!

The Walk:Participants can walk, run or roll their way through some of the region’s most beautiful parks and recreational areas along a 1km - 5km route. All routes are wheelchair accessible. Distance varies by WALK-IT for Parkinson’s location.

After the walk, join us for some entertainment and refreshments. T-shirts at WALK-IT for Parkinson’s locations are available on a first come, first serve basis.

Join the Movement - Take the

1,000,000 Step Challenge!

Get started and accept the challenge!

WALK-IT, Run-IT, RoLL-IT, However You Do-IT …Every Step Counts!

How?Register1

StepRaise Funds2

Step

Wear a Free Pedometer3Step

WALK-IT for Parkinson’sLocations and Times

SATuRDAY, SEPTEMbER 10, 2016

Brant-Norfolk - Mohawk ParkRegistration 1:00 p.m., Walk 2:00 p.m.

London and District - Springbank GardensRegistration 10:00 a.m., Walk 11:30 a.m.

Orangeville and Area - Alder Street Recreation CentreRegistration 10:00 a.m., Walk 11:00 a.m.

South Grey Bruce and Hanover - Hanover Town Park Registration 8:00 a.m., Walk 10:00 a.m.

Stratford and Area - Upper Queen’s ParkRegistration 9:00 a.m., Walk 10:30 a.m.

Waterloo Region - Resurrection CatholicSecondary SchoolRegistration 9:00 a.m., Walk 10:00 a.m.

SunDAY, SEPTEMbER 11, 2016

Chatham-Kent - Kingston ParkRegistration 12:00 p.m., Walk 1:30 p.m.

Owen Sound - Grey Sauble ConservationRegistration 1:00 p.m., Walk 2:00 p.m.

Oxford County - South Gate CentreRegistration 1:00 p.m., Walk 2:00 p.m.

Port Elgin, Kincardine and Area - North Shore Park, Saugeen Shores Registration 1:00 p.m., Walk 2:00 p.m.

Windsor-Essex - Malden ParkRegistration 12:00 p.m., Walk 1:00 p.m.


Sarnia-Lambton - Stoke’s Bay Grill & BarRegistration 1:00 p.m., Walk 2:00 p.m.

Strathroy and Area - Strathroy Seniors CentreRegistration 12:00 p.m., Walk 1:00 p.m.

REGISTER ToDAY:www.walk-it.ca | 1-888-851-7376

September 2016www.walk-it.ca

117- 4500 Blakie Road, London, ON N6L 1G5Phone.................................................Toll Free.............................................Fax......................................................

e: [email protected]: www.parkinsonsociety.ca

www.facebook.com/ParkinsonSocietySWO/

www.twitter.com/ParkinsonSWO

Although we make every effort to ensure that the information in The Parkinson’s Update is accurate, we cannot take responsibility for any errors or omissions. Information is sometimes taken from letters to the editor, submissions from the Internet or other print material. We make an effort to acknowledge all of our sources.

The information is not intended to take the place of professional medical advice. If you are a patient currently being treated and have questions, or if you think you have Parkinson’s but have not been diagnosed, please seek the advice of a medical professional. This information does not replace consultation with your physician.

Recycle andCreate Awareness

(519) 652-9437

(519) 652-92671-888-851-7376

September 9, 10, 17, 2017

A Message from the PSSO Board President

Brad Richards,President,Parkinson Society Southwestern Ontario Board

When you have finished reading this newsletter, please pass it on by leaving it in a library or a waiting room of a doctor’s office, or give it to a friend.

As I head into my second year as Board President of Parkinson Society Southwestern Ontario (PSSO), I am happy to see the development of new programs in the region. I am excited not only because Parkinson’s programs help enhance the lives of people with Parkinson’s but I also have the opportunity to meet a number of wonderful people who support PSSO’s mission. Thanks to your support, we have been able to deliver the programs outlined in Shelley’s letter on page 2. We continue to look at offering new initiatives while enhancing current programs.

On behalf of the PSSO board, I am pleased to announce two new additions to the board – Haad Asad and Anthony Bender. Haad and Anthony officially joined the PSSO board in January 2017 and have already made an impact by lending their expertise at board meetings.

Haad Asad is a senior accountant at KPMG, LLP. Working towards his Chartered Professional Accountant (CPA) designation, Haad is expected to write the final Certified Fraud Examiner (CFE) exam in September 2017. Haad’s decision to get involved with Parkinson Society Southwestern Ontario was motivated by his grandfather who has suffered from the disease for the last decade. Having seen his grandfather’s condition worsen, Haad is determined to help out in any way he can. He has joined the board finance committee.

Anthony Bender was diagnosed with Parkinson’s in 2010 and has attended a variety of PSSO workshops. In May 2014 Anthony had deep brain stimulation (DBS) surgery and it has made a huge difference in his life. Anthony has extensive volunteer experience with various organizations including the Food Bank of Waterloo Region, Steckle Heritage Farm and Victoria House.

Welcome Haad and Anthony to the PSSO board!

PSSO Team (left to right): Vickie Thomas, Coordinator of Volunteer

Development & Administration; Shelley Rivard, CEO; Joanne

Bernard, Manager of Administration; Lisa Nixon, Coordinator, Programs

and Services; Steve Hickson, Coordinator of Special Events;

Breanna Lalonde, Student Placement; Kaitlin Garbutt,

Coordinator, Programs and Services.


Robert Baittie

“The next time you’re imagining the worst, look up the definition of imagination.”

I wrote those words in 2012, shortly after being diagnosed with Parkinson’s at the age of 52. I did so to remind myself that this path I now had to walk could be a positive one. It all hinged on my imagination and the attitude and expectations I brought along with it.

You see, the only certainty my doctors could give me was that I had Parkinson’s. They couldn’t tell me with any accuracy how it was going to progress, which symptoms I would have to endure and which ones I would not. It was a disease left entirely to my imagination.

To me, Parkinson’s was a challenge to overcome. The challenge was not in overcoming the disease itself, because Parkinson’s is what it is. Rather, the challenge concerned my attitude and expectations. It involved not allowing myself to see any aspect of the experience in a negative light. It meant giving my Parkinson’s purpose, giving myself hope. It has worked. Every day with Parkinson’s is no different than the next. Each is made up of 24 hours and they’re mine to make of them what I will.

The first thing I did was to begin writing. I started a blog called ‘Tremors in the Universe,’ which was published as a book in 2014. It gave voice to my Parkinson’s and allowed me to share my belief that each of us is in control of this experience we call life. While we may not be able to control the events that come into our lives, like Parkinson’s, we can control how we experience them through the attitude and imagination we bring to them.

From there, I chose to empower myself – to give myself a sense of control over the disease, rather than allowing myself to sit back and succumb to whatever Parkinson’s was going to do to me. I wanted to take an active role and I wanted to give back. I partnered with The Michael J. Fox Foundation as a five-year Parkinson Progression Marker Initiative (PPMI) clinical trial participant in a research effort to isolate a biomarker for Parkinson’s. I also joined forces with the National Parkinson Foundation (NPF) to help raise awareness and funds for research and care.

In my three years of involvement with NPF, my Moving Day® Chicago Walk team, the Martini Shakers, has raised more than $40,000 in funds through our grass-roots efforts, enlisted honorary co-captains for our team from all 50 U.S. states and five foreign countries, and brought together more than 100 team members to celebrate and raise awareness.

As the Parkinson’s community continues to grow, so do the critical needs of individuals like myself. That’s why WALK-IT for Parkinson’s, held in 14 different locations across Southwestern Ontario, is vitally important. These events not only contribute the resources and funds needed for continuing research and care, but of equal importance, they inspire and bring together families, friends and communities in the fight against Parkinson’s disease.

This past October, just weeks before the Moving Day® Chicago walk, I had the honor of participating in another walk. I walked my daughter, Amanda, down the aisle at her wedding. I walked as the father of the bride. It was a moment I hadn’t imagined might be possible some three years earlier.

Then again, maybe I did imagine it.

I believe that what you do with your imagination can change your life and the lives of others. By each of us continuing to work toward a cure, raising awareness, participating in trials, fundraising and fostering a positive attitude, I believe that in my lifetime, in our lifetime, we will see a cure for Parkinson’s disease.

Imagine that!

This article has been reprinted with the permission of National Parkinson Foundation, a division of the Parkinson’s Foundation @2016.

“The next time you’re imagining the worst, look up the

definition of imagination.”

I wrote those words in 2012, shortly after being diagnosed with Parkinson’s at the age of 52. I did so to remind myself that this path I now had to walk could be a positive one. It all hinged on my imagination, and the attitude and expectations I brought along with it.

You see, the only certainty my doctors could give me was that I had Parkinson’s. They couldn’t tell me with any accuracy how it was going to progress, which symptoms I’d have to endure, and which ones I would not. It was a disease left entirely to my imagination.

To me, Parkinson’s was a challenge to overcome. The challenge was not in overcoming the disease itself, because Parkinson’s is what it is. Rather, the challenge concerned my attitude and expectations: It involved not allowing myself to see any aspect of the experience in a negative light; it meant giving my Parkinson’s purpose, giving myself hope. It has worked. Every day with Parkinson’s is no different than the next. Each is made up of 24 hours and they’re mine to make of them what I will.

The first thing I did was to begin writing. I started a blog called “Tremors in the Universe,” which was published as a book in 2014. It gave voice to my Parkinson’s and allowed me to share my belief

that each of us is in control of this experience we call life. While we may not be able to control the events that come into our lives, like Parkinson’s, we can control how we experience them through the attitude and imagination we bring to them.

From there, I chose to empower myself – to give myself a sense of control over the disease rather than allowing myself to sit back and

Walking with Parkinson’s By Robert Baittie, Author, Tremors in the Universe; and Committee Member, National Parkinson Foundation, Moving Day® Chicago

A Big Thanks to Our National Partners!

Robert Baittie

NPF’s National Partners share our mission and commitment to making life better for people with Parkinson’s disease. We thank each National Partner for embracing NPF as a charity of choice, and helping us raise awareness and support for beating Parkinson’s.

Robert Baittie’s book, Tremors in the Universe - tremorsintheuniverse.com (continued pg 12)

6 www.parkinson.org

I Have Parkinson’sBut It Doesn’t Have Me

“The next time you’re imagining the worst, look up the

definition of imagination.”

I wrote those words in 2012, shortly after being diagnosed with Parkinson’s at the age of 52. I did so to remind myself that this path I now had to walk could be a positive one. It all hinged on my imagination, and the attitude and expectations I brought along with it.

You see, the only certainty my doctors could give me was that I had Parkinson’s. They couldn’t tell me with any accuracy how it was going to progress, which symptoms I’d have to endure, and which ones I would not. It was a disease left entirely to my imagination.

To me, Parkinson’s was a challenge to overcome. The challenge was not in overcoming the disease itself, because Parkinson’s is what it is. Rather, the challenge concerned my attitude and expectations: It involved not allowing myself to see any aspect of the experience in a negative light; it meant giving my Parkinson’s purpose, giving myself hope. It has worked. Every day with Parkinson’s is no different than the next. Each is made up of 24 hours and they’re mine to make of them what I will.

The first thing I did was to begin writing. I started a blog called “Tremors in the Universe,” which was published as a book in 2014. It gave voice to my Parkinson’s and allowed me to share my belief

that each of us is in control of this experience we call life. While we may not be able to control the events that come into our lives, like Parkinson’s, we can control how we experience them through the attitude and imagination we bring to them.

From there, I chose to empower myself – to give myself a sense of control over the disease rather than allowing myself to sit back and

Walking with Parkinson’s By Robert Baittie, Author, Tremors in the Universe; and Committee Member, National Parkinson Foundation, Moving Day® Chicago

A Big Thanks to Our National Partners!

Robert Baittie

NPF’s National Partners share our mission and commitment to making life better for people with Parkinson’s disease. We thank each National Partner for embracing NPF as a charity of choice, and helping us raise awareness and support for beating Parkinson’s.

Robert Baittie’s book, Tremors in the Universe - tremorsintheuniverse.com (continued pg 12)

6 www.parkinson.org

Note: Robert Baittie presented ‘Imagining a New Parkinson’s’ at the Spring Regional Parkinson’s Conference in Windsor. Robert’s book ‘Tremors in the Universe’ is available at the regional office for $20. To view his presentation, go to https://parkinsonsociety.ca/videos-and-audios/


Casey Huisman

I Have Parkinson’sBut It Doesn’t Have Me

In 2006, my wife Jan and I were out west enjoying a few days on the Rocky Mountaineer train. I overheard a child ask his mother, “Why does that man walk so funny?” The boy asked in Dutch, not knowing I could understand exactly what he said. His Mom replied in Dutch, “He has a disability.”

Just before Christmas 2006, we received the diagnosis of slow moving, atypical (because it did not involve tremor) Parkinson’s. I deliberately said ‘we’ because from the very beginning it involved Jan and me, as well as our entire family. I was 55 years old and certainly did not plan on this diagnosis. Some people asked me if I was going to fight it. I suppose not fighting it would mean just crawling under a rock and only existing. I wasn’t about to do that but I didn’t know if ‘fighting it’ was the best strategy. Somehow I came to accept that I would never win this war in the long run but that I’d better learn to live with it. I began to see my experiences more as ‘learning to dance’.

As expected my condition slowly deteriorated but the emphasis was on ‘slowly’. I started pramipexole but that had too many behavioural consequences. Eventually I was put on levodopa and I responded reasonably well. Of course this affected my eating because of the protein connection. Adaptations were (and still are) required. My employer, St. Clair College, was very helpful in arranging my teaching schedule to fit my needs but after a few years, I asked to reduce my workload. I was losing control of my feet and kept accidentally kicking the students and furniture. Not a great student retention strategy. My colleagues were great in backing me up but after several years of increasing accommodations, I went on full-time disability in 2011.

Family life, along with social activities, has switched to a new normal set of routines. I have been able to continue to be involved with some church activities such as visitation, scheduling and speaking but at a much lower level. I’m thankful to have great support from my wife, Canadian family, Dutch family, church family and friends from school. The dance goes on.

Maybe someday I’ll step on Parkinson’s toes if ever better treatments become available. For now, I have come to appreciate the hymn Lord of the Dance by Sidney Carter. The refrain of which goes like this:

Dance, then, wherever you may be,I am the Lord of the Dance, said he,

And I’ll lead you all, wherever you may be,And I’ll lead you all in the Dance said he.

Parkinson’s did not ask me if I wanted to dance but I’m glad I’m not dancing alone. There are still many things to enjoy, many things to be thankful for and many things to look forward to.

Five questions I’m afraid people might ask:

What is the largest number of dishes you broke in one dyskinesia strike? Four (I wasn’t even trying).

What is the most embarrassing thing about dyskinesia? Hitting a child with my menacing arm (actually this has happened and the child very graciously accepted my apology).

What is your scariest experience with Parkinson’s? Waking up feeling like I am paralyzed and feeling like I can’t get up (for me, this feeling improves enough so I get up after 15 minutes or so).

What is the nicest thing that sometimes happens during the night? Hearing very regular soft breathing coming from my wife’s side of the room, at least I didn’t wake her up this time.

Does the Parkinson’s ever let up? Very occasionally - I get up during the night, jump out of bed and walk normally. Legs working fine, no dyskinesia. Why? I don’t know. I don’t want to know. I just enjoy it.

Onward and upward!


Dr. Mandar Jog trained in Neurology and Movement Disorders at the University of Toronto and completed a post-doctoral fellowship in

Computational Neuroscience at the Massachusetts Institute of Technology in Boston. Currently, Dr. Jog is a Professor of Clinical Neurological

Sciences at Western University. He is the Director of the Movement Disorders Program at London Health Sciences Centre.

The Clinic has received the prestigious designation of ‘Centre of Excellence’ awarded by the National Parkinson Foundation, Inc.

QA

QA

Ask TheExpert

QA

What is DUODOPA?

Duodopa is a Levodopa/Carbidopa combination medication in gel-form manufactured by AbbVie. This medication is given through a special tube and is delivered directly into the jejunum in the small intestine. DUODOPA has been in use for over 10 years in Europe but has only been in Canada for approximately 1.5 years.

How is DUODOPA infused?

The process of the infusion of DUODOPA requires a surgical procedure to be done by a gastroenterologist. The gastroenterologist will first place the percutaneous gastrojejunostomy, as it is called, into the jejunum. This has two tubes, one into the duodenum and a smaller one floated into the jejunum. The system is then externalized so that a connector is available as a port on the outside of the body. This port is then connected to a pump system. The pump system has a cartridge which is the cassette of DUODOPA. The DUODOPA delivery system allows pumping of this medication for a period of 16 hours. It has 2,000 milligrams of Levodopa/Carbidopa combination which is titrated, or adjusted, as per the patient’s requirement throughout the day.

At the beginning a bolus dose is given first thing in the morning. Then the drug is infused at a steady rate. Patients are allowed to have a booster dose a couple of times during the day which is all discussed and programmed by the clinic staff.

Where is DUODOPA available in Ontario?

DUODOPA is actually available at what are termed the DUODOPA Centres of Excellence. These are designated centres where a full movement disorder team is available to perform the titration. In addition, an important and vital part of this team is a gastroenterologist. Therefore, a dedicated and trained GI specialist who is able to put in the PEG J tube is required. These centres that have both the gastroenterologist as well as neurological teams, are therefore termed DUODOPA Centres of Excellence. There are numerous centres across Canada in each province at this time, as far as I know.

What does the PEG J procedure involve? Who inserts the PEG J?

The PEG J procedure is performed by the gastroenterologist. The procedure involves an outpatient insertion of a Percutaneous Endoscopic Gastrojejunostomy (PEG J). In this procedure a gastrostomy is placed through an endoscope and through the skin. A special small thin tube is floated into this gastrostomy which is then allowed to go into the jejunum. This gives the jejunostomy aspect for this procedure. The system is connected through a connector to a special pump which then holds the cassette that has the DUODOPA gel. Once the pump is turned on, the gel is pumped over a period of 16 hours into the intestine.

Is DUODOPA available with my private insurance or through the government?

Most private insurance companies cover DUODOPA. If it is not available, then a special form has to be filled out by the neurologist at the centre where an Exceptional Access Program (EAP) form is completed. For this form to be completed, the patient needs to have tried all these standard medications before the DUODOPA pump can be approved. Of course, if certain medications are contraindicated, then the neurologist will put that on the form so that the form is approved. Once the form is approved, then the gastroenterologist is brought into the picture and the procedure can be performed.

Are there any side effects or risks associated with the PEG J procedure?

Of course, the procedure does involve insertion of a tube through the skin into the intestine. The risks have to be discussed with the gastroenterologist and they are specific to the procedure as well as to the particular patient. These risks are reviewed carefully by the gastroenterologist with every patient.


QA

Ask TheExpert

Do you wear the DUODOPA pump all the time?

The DUODOPA pump has a cassette that has been tested and validated for 16 hours of use. Therefore, depending on when the pump is started, the patient will have 16 hours of drug available. This often means that at bedtime, the pump is disconnected, the tube is flushed and capped off. Outside of simply having the DUODOPA pump for the overnight period being an issue of the medication itself, having someone connected to a tube while they are lying in bed can sometimes be a problem as well. Therefore, both from the pharmacology aspect, as well as the ease of use of the pump, most of the time patients are not given overnight DUODOPA. They may take their oral medication at bedtime for the overnight period.

How do you carry the DUODOPA pump?

The DUODOPA pump has to be carried. A variety of different straps and carry pouches are available to make sure that the patient is not overburdened by the weight of the pump.

Can I travel with DUODOPA?

Travel is possible with the DUODOPA pump, as long as all the appropriate syringes and cassettes required for future use, as well as supplies necessary for flushing and maintaining the tube, are all taken along with the pump.

What care or maintenance is required?

The PEG has to be taken care of as any tube would be that is going through the skin. You have to make sure that the area is clean, antiseptically maintained, and the usual precautions need to be taken. Of course, obvious things such as not dropping the pump or tethering the pump or getting the tube caught on anything, are also important aspects of maintaining the tubing. In addition, regular flushing, as the requirements that are outlined for this therapy, have to be followed. The more diligence, the less likely complications will occur.

Do you still need to watch protein intake around medication times?

Of course, it is the same medication that is being given as Levodopa. However, because the medication is pumped continuously, the interference with protein is minimized. When frequent doses are combined with protein, the chance of interaction of the protein is much higher. Having a continuous pump does not interfere with protein intake in a major way.

If you have a question for ‘Ask the Expert’, please write to: The Editor, Parkinson Society Southwestern Ontario, or email: [email protected]. Although all questions will be considered, we cannot guarantee that your question will be published.

In-service workshops to facilitate the care and treatment of people living with Parkinson’s may be arranged through

Parkinson Society Southwestern Ontario.

Also, speakers may be arranged for presentation to service clubs, employee

groups and other general interest groups. For more information, please call 1-888-851-7376

or email [email protected].

Public Education Gift Planning is the act of planning a gift to Parkinson Society Southwestern Ontario.

Here are ways to make a difference through a bequest:

· Invest in PSSO’s greatest needs · Contribute to a specific program

· Donate to research and help find a cure · Commemorate a life

Making your gift of hope for today and tomorrow is easy. Call 1-888-851-7376 or email [email protected].

The Parkinson Legacy


From TheResource Centre

Student Research Awards

We awarded funds to three Graduate Students totaling $50,000 this past April at the Parkinson’s Medical Reception. The Graduate Student Research Program is part of a strategic initiative to encourage young scientists to enter the field of Parkinson’s research and to invest in research and training that offer promise for future work in the area of Parkinson’s. We were excited to award this year’s recipients: Thea Knowles, Olivia Samotus and Andrew Vo.

Researcher: Thea Knowles

Grant: $20,000

Project Title: A Comparison of Voice Amplifiers and Personal Communication Systems in Individuals with Parkinson’s Disease

Project Summary:The majority of individuals with Parkinson disease (PD) will develop speech impairments at some point during the course of the disease. One of the most prevalent and distinctive characteristics of the speech of people with PD is hypophonia, or an overall reduction in loudness that typically makes speech hard to understand across many different social contexts.

While there are behavioural interventions designed to help individuals with PD increase their speech loudness, these do not work for all individuals. The predominant criticism of these treatments is that improvements may not transfer beyond the clinical setting because of cognitive and sensorimotor deficits associated with PD. This may inhibit the incorporation of new speech strategies into habitual speech. An alternative to behavioural intervention is the use of amplification devices. These devices increase the loudness of the speech produced by the individual with PD, rather than requiring them to speak at a higher volume. Though amplification devices provide a viable alternative, there are very few published studies that systematically examine their efficacy in PD.

The proposed study will compare the use of three different devices thought to bring benefit to people with hypophonia secondary to PD: 1) a portable wired voice amplifier; 2) a wireless voice amplifier; and 3) a wireless personal communication system. The first amplifier consists of a small portable speaker that can be worn on the waist belt of the individual with PD. Speech is amplified through a headset microphone attached via a cable to the speaker. The second amplifier also includes a headset microphone to be worn by the individual with PD, but the speech signal is transmitted wirelessly to a moderate-sized audio speaker located up to several metres away from the talker. The third unit is a personal communication device designed for two-way communication.

Personal communication devices have often been used in the past for individuals with hearing impairment, but have not yet been investigated for use in individuals with PD. Both the speaker and the listener wear small portable units. The speaker’s unit is wired to a headset microphone, and the listener’s unit is wired to headphones. The speech of the individual with PD is thus transmitted directly to the listener at a volume that allows them to be better heard.

The present study will examine the use of these three devices in twenty individuals with hypophonia and their caregivers over the course of four visits. The performance of these three devices will be compared using measures of speech intelligibility (understandability) in quiet and in noise, as well as through the use of patient and caregiver questionnaires and rating scales. Participants will be asked to take each device home for a week at a time and rate various aspects of each. Given the limited evidence that currently exists surrounding the use of amplification and personal communication devices in PD, it is anticipated that the results from the present study will provide important new information about patient preferences and the relative effectiveness of these devices.

Dr. Scott Adamsand Thea Knowles




Researcher: Olivia Samotus

Grant: $20,000

Project Title: Investigating Spinal Cord Stimulation for Treating Gait Impairments in Advanced Parkinson’s Disease Patients

Project Summary:Axial symptoms, including gait and balance dysfunction, freezing of gait (FOG) and of problems with speech impair mobility and significantly reduce quality of life in patients living with Parkinson’s disease (PD). Benefits of dopaminergic therapy, such as levodopa, and deep brain stimulation are limited and unpredictable for such axial symptoms.

Spinal cord stimulation (SCS) may be a new therapeutic approach, SCS is simple, minimally invasive, and is a programmable out-patient treatment. Our pilot study followed five advanced PD patients over six months. We observed significant improvement in walking speed and stride lengths, reduced number of FOG episodes and increased confidence in completing daily activities. The goal of this research project, supported by Parkinson Society Southwestern Ontario, is to investigate the therapeutic effect of SCS on gait including FOG in an additional 20 advanced PD patients.

We will assess changes in mobility using a gait carpet and a full-body motion capture suit, in order to measure body locomotion during simple walking tasks before SCS surgery and up to one year after SCS surgery.

Researcher: Andrew Vo

Grant: $10,000

Project Title: Evolution of Cognitive Symptoms and Effects of Dopamine Replacement Therapy in Parkinson’s Disease: A Pharmacological MRI Investigation

Project Summary:Cognitive impairment is an undisputed, non-motor feature of Parkinson’s disease. Improved management of the symptoms in PD is a high priority. Yet it remains a grossly unmet goal because of our poor current understanding of their pathophysiology.

Parkinson’s disease is marked by severe loss of brain cells that produce dopamine, an important chemical messenger involved in movement, cognition, behaviour and motivation. The brain region most affected by dopamine depletion is the striatum. Dopamine replacement therapy is prescribed to address this deficiency and normalize motor abnormalities in Parkinson’s disease. Whereas medication improves functions of more severely affected regions of striatum, it appears to worsen those of the less affected areas.

As Parkinson’s disease progresses, sources of dopamine further deteriorate and initially spared functions decline. The effects of medication on these impairments are not clear. Therefore, the aims of the proposed research are to: 1) validate the brain regions underlying emerging cognitive deficits in Parkinson’s disease; and 2) clarify the effects of dopaminergic therapy on these symptoms.

Olivia Samotus and Dr. Mandar Jog

Andrew Vo and Dr. Penny MacDonald



Patients at different stages of the disease will perform tests designed to assess cognitive abilities, first when on their dopaminergic medications and next when off medications, compared to healthy volunteers. Testing will be performed inside an fMRI scanner. FMRI is a safe and non-invasive imaging technique that allows us to look at the integrity of brain structure and function in individuals performing these tests.

The prevalence of Parkinson’s disease in the population is expected to rise given longer life expectancies, with more patients progressing into advanced disease stages, when cognitive impairment becomes the major source of disability. This research will significantly contribute to our understanding of cognitive decline in Parkinson’s disease and effectiveness of dopaminergic therapy in addressing these symptoms. This will translate into better-informed treatment strategies towards improved symptom management ultimately improving quality of care and life for Parkinson’s disease patients.


We are pleased to announce that Kaitlin Garbutt has joined our team as Coordinator, Programs and Services and is working with Lisa Nixon. Kaitlin’s previous experience as a Project Officer for the Schlegel UW Research Institute for Aging (RIA) and most recently Recreation Coordinator for The Village of Winston Park, along with her B.A. Honours in Gerontology, made her an ideal candidate for this position. She has had the privilege of working with people living with Parkinson’s and is extremely passionate about being able to offer a range of support services and education. Kaitlin is based in the Waterloo region.

The Aware in Care kit is designed to protect, prepare and empower people with Parkinson’s before, during and after a hospital visit. Each kit contains tools and information to help advocate and plan for the next hospital stay – whether it is a planned visit or an emergency.

Pack the Aware In Care Kit with your medications. The kit contains:

Hospital Action Plan – helps prepare you for your next hospital visit.Parkinson’s ID Bracelet – wear at all times in case of an emergency.Medical Alert Card – complete and place in your wallet.Medication Form – complete and keep copies in your kit.Parkinson’s Fact Sheet – share with hospital staff so a copy can be placed with your chart.I Have Parkinson’s Reminder Slips – share vital information about Parkinson’s with staff.Thank You Card – present to a staff member who provides high quality care.Magnet – use to display a copy of your medication form in your hospital room.

The Aware in Care kit is $50 or free (plus shipping where applicable) to members/monthly donors. Call 1-888-851-7376 or email [email protected] to request your Aware in Care kit.

Be Prepared for Hospital Stays with the Aware in Care Kit

Being part of the Monthly Giving Club and/or becoming a Member is easy:• complete the blue monthly giving/membership form and mail to Parkinson Society Southwestern Ontario; or• complete the online form at www.parkinsonsociety.ca or call us at 1-888-851-7376.



Parkinson’s and Exercise

Many factors influence the treatment of Parkinson’s, including the integration of an exercise program. Exercise helps maximize the effect of medication thus improving quality of life.

• Improved muscle flexibility, range of motion, coordination, balance, gait, speech and dexterity.• Strengthens tensor muscles which help keep the back straight.• Lessens stiffness and problems of posture.

• Lessens fatigue.• Helps relax muscles and relieve cramps.• Reduces stress, depression, insomnia and constipation.

Some studies suggest physical exercise may slow the progression of Parkinson’s.

Take Care!

It is recommended that you consult with your healthcare professional before engaging in an exercise program. A program can be designed that’s right for you.

Which Exercise Program is Right for You?

There are many physical activities that are beneficial to people with Parkinson’s. Sometimes exercise programs need to be adapted for you. Find out about Parkinson’s exercise groups from Parkinson Society Southwestern Ontario.

Suggested Activities• Tai chi• Yoga• Singing and dancing• Walking• Nordic walking

• Swimming or water aerobics• Cycling• Boxing• Wii Fit game console• Stationary bicycle or treadmill

Always keep your back straight. Another person may have to help you to avoid falls.

Helpful Hints to Make Physical Activity More Beneficial and Enjoyable

• Wear comfortable clothing and athletic footwear.• Breathe deeply while exercising.• Stop exercise if pain develops.

• Exercise when your medication is at its peak efficiency.• Exercise regularly and make it a part of your daily routine.• Vary your activities.

Consistency is the key to a successful exercise program. One 30-minute session a day is recommended. If that’s too much, exercising three times a week is an acceptable compromise. It’s also important to take breaks during an exercise session so you won’t overdo it. This will avoid fatigue, as well as aches and pains.

Staying Active on a Daily Basis

• Walk.• Plan short exercise sessions (5 to 10 minutes) throughout the day to loosen your legs, stretch and breathe deeply.• Stretch when you get out of bed, relax all of your muscles and maintain that for 30 and 60 seconds.

• Read out loud, exaggerating syllables to exercise your pronunciation and the intonation of your voice.• Rotate your upper body for a few minutes once you’ve sat down at the table for dinner.• Use the stairs instead of the elevator.• Get off the bus one stop early.

To fully benefit from what physical activity has to offer, it is important that you gradually increase intensity, as well as the time you allow until you’ve reached 30 minutes a day. Do sweeping movements that call upon your whole body. Do things you like and that give you quality time with friends and family! You’ll enjoy yourself and exercise will become a part of your daily life!

It’s Never Too Late to Start!

Excerpt from Parkinson’s and Exercise brochure, available by calling Parkinson Society Southwestern Ontario at 1-888-851-7376 or going to www.parkinsonsociety.ca.

Exercise has many benefits including:

Getting a good night’s rest is important for your health, mood and overall quality of life. Parkinson’s disease causes changes to the brain that can result in disturbances to your sleep, and in turn, to your partner’s rest. Recognize if you experience any of these symptoms and ask your doctor for ways to improve your quality of sleep.

DAYTIME SLEEPINESS

INSOMNIA

REM BEHAVIOUR DISORDER (RBD)

SLEEP PROBLEMS IN PARKINSON’S DISEASE

WHAT CAN YOU DO?

Feelings of excessive sleepiness during the day.

May experience ‘sleep attacks’ (sudden desires to sleep) while doing regular activities.

Contributes to feelings of tiredness during the day.

REM (rapid eye movement) sleep is a stage of sleep during which dreaming usually occurs.

Normally, you are unable to move during REM but this paralysis is lost with RBD.

RBD might cause you to act out your dreams (e.g., kick, punch, talk, etc.) and can result in injury to yourself or your bed partner.

RBDs may develop even before the onset of your motor symptoms.

Try an afternoon nap for an hour to rest and refresh for the evening.

Avoid driving or operating heavy machinery even if you feel slightly

sleepy during the day.

Avoid strenuous exercise, hot baths or showers before bedtime.

Avoid going to bed hungry.

Go to sleep at a regular time.

Use the bed for sleeping only.

Sleep in separate beds if you are disturbing your partner’s night.

Talk to your doctor about changing your medications.

It is a pleasure to announce the appointment of Rose Johnston as Coordinator, Programs and Services for Parkinson Society SouthwesternOntario. Rose comes to us with a Master of Science in Kinesiology degree from Wilfrid Laurier University with a concentration in Parkinson’s disease exercise rehabilitation. As a former volunteer trainer for the PEP for Community Caregivers, Rose’s passions include improving the quality of services for families dealing with the challenges of Parkinson’s. Her experience in Long Term Care Management, Adult Day Program Coor-dination and as a trainer with theCanadian Centre for Activity and Aging at Western University has helped her gain the knowledge, understanding, compassion and dedication that are needed for this role. We welcome Rose to our Parkinson’s Community and anticipate that every area of our mission will be enhanced as a result of her work and experience.

Getting a good night’s rest is important for your health, mood and overall quality of life. Parkinson’s disease causes changes to the brain that can result in disturbances to your sleep, and in turn, to your partner’s rest. Recognize if you experience any of these symptoms and ask your doctor for ways to improve your quality of sleep.

DAYTIME SLEEPINESS

INSOMNIA

REM BEHAVIOUR DISORDER (RBD)

SLEEP PROBLEMS IN PARKINSON’S DISEASE

WHAT CAN YOU DO?

Feelings of excessive sleepiness during the day.

May experience ‘sleep attacks’ (sudden desires to sleep) while doing regular activities.

Contributes to feelings of tiredness during the day.

REM (rapid eye movement) sleep is a stage of sleep during which dreaming usually occurs.

Normally, you are unable to move during REM but this paralysis is lost with RBD.

RBD might cause you to act out your dreams (e.g., kick, punch, talk, etc.) and can result in injury to yourself or your bed partner.

RBDs may develop even before the onset of your motor symptoms.

Try an afternoon nap for an hour to rest and refresh for the evening.

Avoid driving or operating heavy machinery even if you feel slightly

sleepy during the day.

Avoid strenuous exercise, hot baths or showers before bedtime.

Avoid going to bed hungry.

Go to sleep at a regular time.

Use the bed for sleeping only.

Sleep in separate beds if you are disturbing your partner’s night.

Talk to your doctor about changing your medications.



Maintaining Good Cognitive Health

Exercising, healthy eating, spending time with family and friends, doing crosswords and getting a good night's sleep are just some of the habits that help to preserve your brain health and memory. Whether you are a CarePartner/caregiver or a person with Parkinson’s disease (PD), maintaining good cognitive health contributes to your overall well-being.

Challenge yourself and enhance cognitive health

Visit your community or senior centre to see what programs are available to you and your family. Ask your healthcare provider for a referral to an occupational, recreational, art or physical therapist to help you get started with the recommendations listed below.

• Devote a calendar to scheduling these activities. Pace yourself and have fun. • Get plenty of sleep, pay attention to your diet and be sure to get the fluids you need throughout the day.

Increase physical activity

• See your primary doctor or neurologist to be sure it is safe to exercise. • Get a physical therapy consultation to develop the best and safest exercise program for you. • Exercise regularly.

• Don't do it alone. Involve your family or a friend, walk in the park, go to exercise or yoga classes.• Yoga and Tai Chi give extra benefits of relaxation. • Dance and music add fun, joy and creative expression.

Flex your 'thinking muscles'

• Take a class, 'go back to college' and attend lectures. • Read or listen to documentaries or books on tape.

• Do mind teasers, such as computer or video games, or puzzles. • Play cards: bridge, poker, even solitaire.

Engage socially

• Attend support groups. • Volunteer for Parkinson Society Southwestern Ontario.

Combine social benefits with that of exercise, creativity and fun

• Take a painting or arts class, acting class or dancing class.• Join a poetry or book group.• Join a coffee hour, movie night or make your own get-together.

The following lists specific functions, activities or games that build on these functions: LanguageReading, journalingVisual ScanningVideo games, puzzles, drawing, painting and craftsMulti-tasking Any complex task: cooking, assembling furniturePlanningCard games, strategy games such as bridge or pokerProblem SolvingStrategy games

MemoryCoordination games, jigsaw puzzles, painting, playing musical instruments, constructional gamesSpeech Reading aloud, singing and attending social groups can help maintain speechCalculationGames requiring calculation skills such as Sudoku

Note: This article has been produced by, and reprinted with the permission of Parkinson Society British Columbia



15

Parkinson’s Disease and Mental Health

Certain mental health problems (e.g.,depression) and disturbances (e.g., hallucinations, delusions and paranoia) are possible complications of Parkinson's disease and/or its treatment. However for most people with Parkinson's disease, depression and mental disturbances can be controlled.

What Is Depression?

Depression is a mood disorder caused by a chemical imbalance in the brain. The term ‘mood’ refers to an emotional state that affects how a person thinks or acts. With depression, a person experiences great sadness. Serotonin, a chemical in the brain, has been associated with depression.

Depression is common in patients with Parkinson's disease. The depression often begins years before any of the other symptoms of Parkinson's disease appear.

What Are the Signs of Depression?

Depression can actually increase the physical effects of Parkinson's disease and possibly cause a progression of the disease. If you experience any of the following symptoms for longer than two weeks at a time, you should contact your doctor.

• Depressed mood• An inability to find pleasure in things that were once pleasurable• Sleep disturbances (inability to sleep or sleeping excessively)• Change in appetite• Fatigue• Altered level of activity• Difficulty with concentration• Low self-esteem• Thoughts of death

How Is Depression in Parkinson's Disease Treated?

In Parkinson's disease, depression may be treated with psychological therapy as well as with medications. People seem to do better when they receive both psychological and drug treatments.

There are many antidepressant medications available each with their own advantages and disadvantages. The choice of antidepressant for patients with Parkinson's disease depends on their overall condition and specific needs. Most people with Parkinson's disease should not take amoxipine (Ascendin) because this medication could temporarily worsen the Parkinson's disease symptoms.

Psychological therapy can help a patient with Parkinson's disease to re-establish a sense of self-worth in the face of declining functional abilities. It can also help the person to maintain good relationships with caregivers and family members, despite increasing dependency.

What Other Mental Health Issues Are Associated With Parkinson's Disease?

Hallucinations, paranoia and delusions are all possible side effects of Parkinson's disease treatments. A hallucination occurs when you think something is present when it isn't. For example, you may hear a voice but no one is there. An example of paranoia is when you think someone is following you when they are not. Delusion is when you are convinced something is true despite clear evidence proving that it is not.

Source: http://www.webmd.com/parkinsons-disease/guide/depression-disturbances#1

Help Us Reach New Heights ... Volunteer Today!

caCall 1-888-851-7376 or email [email protected] find out about volunteer opportunities in your community.



Common Myths About Dementia

If I have problems with memory I have dementia.

FALSEEveryone forgets details such as where they put their keys or the date and time of their next doctor’s appointment. The difference between a ‘memory slip’ and a diagnosis of dementia is that dementia significantly impacts social and daily functioning. Memory slips can create problems for us but they are not as serious as the memory loss that comes with dementia.

People with dementia can’t read.

FALSEThe belief that people with dementia cannot read is a myth. Most people with dementia can still read (as long as they could do so in the past). However, people with dementia often don’t read because the font is too small for their aging eyes. Another consideration is that the reading materials may not be of interest or might be too complicated for the person. Most of us are picky with the books and movies we watch and those with dementia are no different. Ask the person to read words of different sizes to determine how large the text needs to be and then select large-print books that will be of interest and are within the reader’s abilities.

People with dementia are no longer able to do the things they used to enjoy.

FALSEMany people with dementia enjoy doing some of the things they did in the past, as long as the task is adapted for their abilities. Your loved one is more likely to complete a task successfully if it is broken down into small steps and memory cues are provided. For example, someone who loved to bake may no longer be able to manage a 14-ingredient cake recipe with multiple measuring cups and various bowls but might be able to bake a ‘cake in a mug’ with one bowl and only three ingredients (recipe available in the free-downloads section at dementiability.com). To ensure your loved one is able to enjoy a variety of leisure activities, make sure that every activity is adapted to suit his or her interests and abilities and ends in success.

People with dementia have no spared capacities.

FALSEThere are many abilities that remain intact in the person with dementia. It is vitally important to focus on these spared capabilities, with the aim of keeping your loved one engaged in life and living for as long as possible. Disuse often leads to a decline that is not related to the dementia.

It is important to correct people with dementia when they say things that are not true.

FALSEThe cardinal rule is ‘never argue with a person with dementia.’ A person with dementia is simply taking files from their memory bank that come from another place and time. They are sure they are telling the truth. This is called confabulation. People with dementia often make up answers when they can’t recall the details they are seeking. Don’t argue – you won’t win!

We are always interested in short stories involving our Parkinson’s community. If you have Parkinson’s, are caring for someone with Parkinson’s or if you are a Parkinson’s volunteer, we invite you to submit a story, no more than 500 words. Also, if you have questions for Ask the Expert or if you have tips for living better with Parkinson’s, please give us a call at 1-888-851-7376.

Although all submissions will be considered, we cannot guarantee that your submission will be published.

Do You Have a Story to Share for The Parkinson’s Update?


People with dementia have no memories of the past.

FALSE Memory loss is considered to be the hallmark feature of dementia (although some forms of dementia do begin with a decline in judgment and memory deficits appear later). The person with dementia often needs ‘memory supports’ to help trigger memories from the past and to support memories in the present (e.g., finding locations and doing things in the right order). Be sure to label photographs and use words and images to support memory in all aspects of life. Photos of days gone by can trigger other reminiscences, thus opening the lines of communication.

People with dementia can’t learn.

FALSESome people with dementia become entirely reliant on a personal support worker or caregiver to get them through the day. Some of this dependence may be reduced if memory supports are put in place. Memory supports and routines can trigger actions such as helping to find locations and things and reminding a person how to do things in the right order. In some circumstances, I have seen people who were incontinent learn how to find the washroom and then use the toilet independently using step-by-step instructions beside the lavatory. If you are a caregiver, try using environmental cueing supports to enhance the independence of your loved one.

There are very few things we can do to support a person with dementia.

FALSE While there is no cure for dementia, there are many ways to prevent decline and even see noticeable improvements in disorientation, wandering and lack of engagement in daily life. The goal is to find out what your loved one is able to do and then to adapt the activities and tasks of daily life according to their interests.

People with dementia don’t need family to visit them once they are in a nursing home.

FALSEA diagnosis of dementia comes with many challenges but we must always remember that the person continues to have the same needs as you and me. A person who enjoyed travel, leisure and special moments with friends and family is still fundamentally the same person; they just have new challenges to address each day. To support your loved one who has dementia, find a variety of things to do that add joy to each day (for both of you) and provide opportunities for the person to love and be loved.

When you give a person with dementia a doll you are treating that person like a child.

FALSEThe focus of dementia care is on meeting the needs of each individual according to their interests, skills and abilities. The undeveloped brain is challenged in a world that is difficult to navigate. The need for love and human connection remains strong in those with dementia. Dolls can meet the needs of those who are lonely and who need to love and nurture. Dolls also offer something to do, thus addressing boredom. Check out our doll therapy guidelines and other resources at dementiability.com.

Gail Elliot, BASc, MA, author, gerontologist and dementia specialist, is the founder and CEO of DementiAbility Enterprises. Visit her website at www.dementiability.com to learn more.

Source: Caregiver Solutions, Volume 18, Issue 4, caregiversolutions.ca

Order your Aware In Care kit today. See Page 10 for details.

Your doctor wants you to get your medications on time.In the hospital, 3 out of 4 people with Parkinson’s don’t.


Living with Parkinson’s: Is There an App for That?


SMART Exercise Classes, SMART Parkinson’s Exercise Classes

and Fall Prevention

The VON Canada SMART (Seniors Maintaining Active Roles Together)® Program offers exercise classes to community members 55+ or adults with a disability who wish to improve their strength, balance and flexibility, regardless of current physical ability.

SMART’s gentle exercises are facilitated by instructors who receive specialized training and ongoing education to deliver safe, appropriate physical activities for healthy aging. Instructors also provide fall prevention education to increase awareness of the nature and impact of falls.

Topics for the fall prevention education include:

• Cardio Respiratory Health• Physical Activity, Nutrition and Hydration• Aging Bones and Muscles• Medication and Healthcare Providers

• Tools to Stay Safe and Independent• Home and Neighbourhood Safety• Vision, Foot Health, Aging, Foot Care and Footwear• Active Minds, Brains and Mental Health

SMART In-Home, Congregate, and Group classes are for those who cannot take part in other programs because of mobility and/or health issues. Participants can enrol themselves or be referred by healthcare providers, family or friends. SMART class programming varies by area. Contact a coordinator in your area today for more information:

Oxford 519-539-1231Huron Perth 519-291-5898Chatham Kent 519-352-5515Sarnia Lambton 519-542-2310

Windsor Essex 519-254-4866Middlesex Elgin 519-695-2273Grey Bruce 519- 376-5895Peel Waterloo Wellington Dufferin 519-323-2330

Drs. Mike Ravenek and Liliana Alvarez are both faculty members in the School of Occupational Therapy at Western University. They have a shared research interest in the role and the potential that technology can play in enhancing the lives of those living with chronic illness, including Parkinson’s. Specifically related to mobile technology, and ‘apps,’ they have recently presented at national conferences. They have also published in an international journal on the importance of being able to evaluate the quality of ‘apps’ before being used for health purposes.

With the popularity of smartphones and tablets, each week more and more apps flood the smart-device market and are available in popular app stores for downloading. A number of these apps are applicable to those living with Parkinson’s. Some are free and some cost money; some are frequently updated and some are rarely updated; some require permissions and some do not. With all of these options, how can users, including those living with Parkinson’s and CarePartners, evaluate the quality of an app to know whether or not it would be a good idea to use? This presentation will review a number of questions, presented as a checklist tool that users can use to evaluate an app before downloading it, in order to help protect them from the bad ‘app’les.

To find out more about apps available to help live better with Parkinson’s, register for our free webinar – Living with Parkinson’s: Is There an App for That? The webinar is on September 20 from noon to 1:00 pm. Go to https://parkinsonsociety.ca/event/webinar-living-parkinsons-app/ to register.


Fall 2017 Regional Parkinson’s ConferenceSaturday, November 11

The semi-annual Parkinson’s Conference provides information, education and support to people living and working with Parkinson’s in the Southwestern Ontario Region. Highly regarded by both those within the Parkinson’s community and the

healthcare profession, the conference is always one of the year’s highlights. Come individually, with your spouse or partner, or make it a road trip with your local Support Group!

The Hellenic Community Centre133 Southdale Rd W, London

Registration: $50

If you are travelling and want to stay the night, remember to book your hotel room early as space is limited. We have a block of rooms reserved at the Holiday Inn Hotel & Suites (855 Wellington Rd S) at a rate of $99. To get this special rate you must book your accommodations by calling 519-668-7900 by October 10, 2017 and providing the group code ‘Parkinson Conference’. Please mention accessibility needs when booking. The hotel is a 10 minute drive from the conference venue.

Highlights of Spring 2017 Parkinson’s Regional ConferenceHoliday Inn Ambassador Bridge Windsor – May 13, 2017

Thank you to all of our speakers and sponsors who made this event possible!

To register, go to www.parkinsonsociety.ca or call 1-888-851-7376.

Note: Recordings from past conferences can be found by going to http://www.parkinsonsociety.ca/videos-and-audios.html.

Bath FitterComfort Mobility Inc

Home Instead Senior Care

Bayshore Therapy & Rehab

Premier Sponsor

Principal Sponsors

Associate Sponsor

Dr. Siyaram PandeyDr. Amer Burhan

Robert Baittie

Conference Speakers

Brad Richards and Dr Pandey

We have a fascinating line-up of speakers:Dr. Jeff Holmes

Optimizing environmental adaptations for the enhancement of agency and independence

Dr. Mandar JogUpdate in Parkinson’s Research

Dr. Mandar Jog and Dr. Dwight StewartParkinson’s Hot Topics

John BaumannPositively Un-Shake-Able: What You Can Do to Succeed in Living the Best Life Possible


Celebrating Success!

Salons and volunteers made A Hair Affair for Parkinson’s special for participants and raised $31,000!

A Hair Affair for Parkinson’s (Waterloo Region)

Waterloo region participating A Hair Affair for Parkinson’s salons included

Capri Salon & Spa, FAD Hair Studio, OZ Hair and Skin, Salon Parastar Spa,

Voila – Northgate Location and Voila – Sportsworld Location.

A Hair Affair for Parkinson’s (London)

London participating A Hair Affair for Parkinson’s salons included Chatters

(Farm Boy Plaza), Chez Cheveux, Elle Reve Salon, Melo Hair & Beauty Bar,

Michael Christopher Hair Salon, N U Hair & Make Up Studio, Nova Vita

Hair Studio & Esthetics, Salon Entrenous, Shampoo Planet, Side Street Salon,

Skintreet, STUDIO H Artist Group, The Beauty Bar, Wabi Sabi Hair Artistry and Wright Hair.

Thank you to A Hair Affair for Parkinson’s Key Sponsor, Hello Beautiful, for

sponsoring the event and providing their quality milk_shake hair product to

participants and stylists. (left to right) Geraldine Doerr, Michelle Lundy,

Jay Doerr, Doug Doerr and Kelly Bell.

A Hair Affair for Parkinson’s was featured on Rogers daytime London.

(left to right) Charlene Main, Deyana Emad, Kendra Perriam and Laura Lampkin.

21The Parkinson’s UpdateTo find out about upcoming events or to get involved, go to www.parkinsonsociety.ca.

Thank you to all our sponsors, participants, donorsand volunteers!

Eighth Annual Parkinson Golf Classic Presented by Rembrandt Homes (London)It was another great day of golf, food and a huge silent auction. The event raised $68,000. (left to right) Walter Gretzky (famous hockey dad and person living with Parkinson’s), Curtis Bray and Hilary Welch (on-air hosts from Jack 102.3 in London).

HollisWealth Charity Golf Classic (Waterloo Region)

Golfers enjoyed a beautiful day of golf including a BBQ lunch, a buffet dinner

and a silent auction. The tournament raised $46,000 to support Parkinson Society

Southwestern Ontario and MS Society Grand River Chapter. (left to right) siblings

Anne Kinzie, Bob Karai, Carol Johnston, Martha Ciuciura and John Karai.

Fifth Annual Signatures – A Taste Test of London’s Best

in Partnership with Finch Auto Group

London restaurants and caterers showcased their signature dishes at Budweiser Gardens to over

1,000 guests raising $30,600. (left to right) Rob MacLachlan (COO Finch Auto Group), Ryan Finch

(President Finch Auto Group), FINCHY, Jordin Finch (Finch Chevrolet Cadillac Buick GMC), Mike

Beernink (Managing Partner Finch Chrysler Dodge Jeep RAM), Rob Stockie (Managing Partner

Mercedes-Benz London) and Hass Hijazi (Partner Finch Hyundai and Genesis London).

The Rock Steady Boxing Parkinson’s group takes a break from exercise to enjoy

delicious food samples from local restaurants and caterers at Signatures.

Thank you to our Premier Sponsor

Thank you to our Premier Sponsor


Saturday, September 9:Brant-Norfolk – Mohawk ParkGoderich – St. Christopher’s Beach (Between Main Beach and Rotary Cove)

London and District – Springbank GardensOrangeville and Area – Alder Street Recreation CentreSouth Grey Bruce and Hanover – Hanover Town Park Stratford and Area – Upper Queen’s ParkWaterloo Region – Resurrection Catholic Secondary School

Sunday, September 10:Chatham-Kent – Kingston ParkOwen Sound – Harry Lumley Bayshore Community Centre (New Location)

Oxford County – South Gate CentrePort Elgin, Kincardine and Area – North Shore Park, Saugeen ShoresStrathroy and Area– Strathroy Seniors Centre

Windsor-Essex – Malden Park (Malden Road Entrance)

Sunday, September 17:Sarnia-Lambton – Stoke’s Bay Grill & Bar

WALK-IT for Parkinson’s

For more information and to

register, visit www.walk-it.ca or

call 1-888-851-7376.

WALK-IT Walkers: Taoist Tai Chi

Over 90% of those who are regularly doing the gentle movements of Taoist Tai Chi (TTC) have come to it with an issue that needs tending. People dealing with Parkinson’s disease, early Alzheimer disease, cancer, surgery, or injuries from falls and accidents will not find an instant cure or antidote but will learn ways to relieve or solve some of the problems and the stress that come with these issues.

By gradually and steadily improving balance, flexibility, leg strength and calmness, everyone who practises TTC receives rewards for their efforts but none so much as those with major issues such as Parkinson’s disease.

Joan Skelton has been a member of the Owen Sound Taoist Tai Chi group since 2007. “I was constantly in awe of the determination and positive spirit of the participants and observed many miracles, both small and large, of relief and improvement that occurred with continual practice over a period of time,” she said. “The personal enjoyment and sense of accomplishment within the group were definitely infectious!”

Therefore, it was a given when in 2009, one of the TTC group members and the wife of a Parkinson’s patient invited the group to participate in the local Parkinson’s walk. “We jumped in with a team of TTC walkers and an offer to do a demo at the event,” said Joan. But their participation went beyond just entering a team and doing a demo. “When we got to the event, we noticed that there seemed to be a need of volunteer help, so we offered assistance where needed and we’ve helped at every event ever since.”

The Owen Sound TTC group enjoys having the opportunity to socialize with those living with Parkinson’s and with their families and friends at the annual WALK-IT for Parkinson’s. Their participation fits very well with the objectives of the TTC group. “Our participation in WALK-IT for Parkinson’s realizes these three of the four aims and objectives of the Taoist Tai Chi Society: to make TTC arts available to all, to promote the health-improving qualities of TTC art and to help others,” explained Joan.

For more information on the Taoist Tai Chi Society and its programs, please visit: www.taoist.org.


WALK-IT Walker: Carolyn Young (Sarnia)

Being a two-time cancer survivor, Carolyn Young of Sarnia was ready for a fight when she received her Parkinson’s diagnosis in 2012. She decided to approach her journey with Parkinson’s with the same fighting attitude and sense of positivity that she used to fight cancer. “I try to control what I can with this disease. Otherwise, it will become ‘the boss of me’ and I am too stubborn and determined to allow that,” she said.

After hearing about the Parkinson’s walk at the Sarnia-Lambton exercise class and at Support Group meetings, Carolyn and her husband Ron joined the event in 2014. They have had family and friends join them ever since. She says it’s important to participate in order to raise awareness and funds to help those living with Parkinson’s in her community. “I have benefited first-hand from the break-throughs that happen when research dollars are put to work,” said Carolyn. “Also, the walk provides an opportunity for the entire community to honour the memory of those who have passed on and to celebrate the contributions they and their CarePartners made along their journey.”

Carolyn loves the online fundraising tools available to WALK-IT for Parkinson’s participants, as it allows her to involve people who live out of town in the event. “I email friends and family attaching a personal letter giving my reasons for participating in both the fundraising and the walk. After each contribution is made, I record it and send off a personalized thank you,” said Carolyn.

With the 2017 WALK-IT for Parkinson’s events coming up in September, Carolyn can’t wait to participate once again. “I enjoy the social aspect of the event. It provides an occasion to see old friends and acquaintances, while affording the opportunity to make new ones. I find it a very encouraging and positive experience, as you witness first-hand how friends and family come together to share in this journey, all the while demonstrating their love and support. It is this sense of community that brings me back every year.”




Participate:Participants can register as an individual or form a team. If you are unable to attend, please consider fundraising as a virtual walker and do your part in support of those living with Parkinson’s.

Form a Team:A team of family, friends and co-workers is a fun way to build camaraderie. Challenge each other in a healthy, competitive way – it makes a difference in the enjoyment of the event. Walk for a loved one and invite others to join you to help fight Parkinson’s.

Collect Pledges:Set a goal of raising $1,000. Parkinson Society Southwestern Ontario does not receive any government funding and relies on the support of our communities to be able to provide our programs and services to those in need. Online fundraising also available at www.walk-it.ca.

Volunteer:WALK-IT for Parkinson’s is a community based event. We are looking for volunteers to share their talents and help us run a great event. Call 1-888-851-7376 or email [email protected] to volunteer today!

The Walk:Participants can walk, run or roll their way through some of the region’s most beautiful parks and recreational areas along a 1km - 5km route. All routes are wheelchair accessible. Distance varies by WALK-IT for Parkinson’s location.

After the walk, join us for some entertainment and refreshments. T-shirts at WALK-IT for Parkinson’s locations are available on a first come, first serve basis.

Join the Movement - Take the

1,000,000 Step Challenge!

Get started and accept the challenge!


How?Register1

StepRaise Funds2

Step

Wear a Free Pedometer3Step

WALK-IT for Parkinson’sLocations and Times

SATuRDAY, SEPTEMbER 10, 2016

Brant-Norfolk - Mohawk ParkRegistration 1:00 p.m., Walk 2:00 p.m.

London and District - Springbank GardensRegistration 10:00 a.m., Walk 11:30 a.m.

Orangeville and Area - Alder Street Recreation CentreRegistration 10:00 a.m., Walk 11:00 a.m.

South Grey Bruce and Hanover - Hanover Town Park Registration 8:00 a.m., Walk 10:00 a.m.

Stratford and Area - Upper Queen’s ParkRegistration 9:00 a.m., Walk 10:30 a.m.

Waterloo Region - Resurrection CatholicSecondary SchoolRegistration 9:00 a.m., Walk 10:00 a.m.


Chatham-Kent - Kingston ParkRegistration 12:00 p.m., Walk 1:30 p.m.

Owen Sound - Grey Sauble ConservationRegistration 1:00 p.m., Walk 2:00 p.m.

Oxford County - South Gate CentreRegistration 1:00 p.m., Walk 2:00 p.m.

Port Elgin, Kincardine and Area - North Shore Park, Saugeen Shores Registration 1:00 p.m., Walk 2:00 p.m.

Windsor-Essex - Malden ParkRegistration 12:00 p.m., Walk 1:00 p.m.


Sarnia-Lambton - Stoke’s Bay Grill & BarRegistration 1:00 p.m., Walk 2:00 p.m.

Strathroy and Area - Strathroy Seniors CentreRegistration 12:00 p.m., Walk 1:00 p.m.

REGISTER ToDAY:www.walk-it.ca | 1-888-851-7376

September 2016www.walk-it.ca



To find a walk location near you and to register visit www.walk-it.ca.

Register Raise Funds Wear a Free Pedometer1 2 3Step Step Step

How?

Thank you to the organizers of the Fred Macey Sr. Mini-Golf Tournament.

(left to right): Kristyn Saunders, Tiffany Saunders and Robin Macey with

Steve Hickson (PSSO).


CommunityPartnerships

CHAMPIONS FOR PARKINSON’SHold Your Own Event To Benefit People with Parkinson’sBecome a Champion for Parkinson’s and raise funds to help us increase our support services, build a strong advocacy campaign and improve the quality of life for those affected by Parkinson’s in Southwestern Ontario. Parkinson Society Southwestern Ontario can provide friendly support as well as website and social media promotion.

From garage sales, birthday parties and wine tastings to sports tournaments and car shows, no event is too big or too small. Take the lead, get creative, build awareness, raise funds … and don’t forget to have fun!

Your actions have an impact – start planning your event today!

For more information, contact Steve Hickson, Coordinator of Special Events at 1-888-851-7376 or [email protected].

Community PartnershipsCountry Village Homes (Woodslee)Grand Bend Bike Club (Grand Bend) Great-West Life (London)London Police Association (London)Rebekah Assembly of Ontario (Forest)Trillium Court Retirement Home (Kincardine) Vittoria Women’s Institute (Vittoria)

Honouring Loved Ones Through DonationsRon Brown (Goderich)Patti Robinson (Sarnia)Wayne Schultz (Mount Forest)Fred Zylstra (St. Thomas)Michelle & Ada (Windsor)

Find Out if Your Employer Offers a Matching Gift or Volunteer Program:Many companies have matching gift programs in which they will match a donation given by an employee, retired employee or even volunteers. Check with your company’s human resources department and ask your parents, friends or relatives if their employer has a matching gift program as well. Then, work with employers to check the eligibility and application requirements. It’s an easy way to double your impact.

Pledge Matching ProgramLabatt Employee Matching Gift Program (London)

Lauren presented her Grandad (Ron Brown) with money she saved from her allowances, gifts and extra chores to give to PSSO. It was the best present Ron has ever received because it was filled with love, concern and hope for the future.

Sam and Mercedes Sanfilippo organized and participated in a softball tournament for Parkinson’s to help raise funds for Parkinson’s programs.

Bill Coombes hosted his annual Parkinson’s audio-visual night in conjunction with the Sarnia Photography Club and presented a cheque to John Scott on behalf

of PSSO.


Volunteer Profile: Marisa and Michelle Krulicki

Marisa and Michelle Krulicki began their involvement with Parkinson Society Southwestern Ontario (PSSO) as walkers on Team Popsy at the Waterloo Regional walk in 2011. Marisa organized the team for her grandfather Bill Renaud, lovingly called ‘Popsy’ by all. They were very pleased that as a new team they placed second in overall funds raised at the local Parkinson’s walk.

In 2015 Marisa and a friend volunteered for the walk held at Resurrection Catholic Secondary School. Marisa’s mom Michelle followed her lead by volunteering for the walk the next year. M&M, as Steve Hickson (Coordinator of Special Events, PSSO) affectionately calls Marisa and Michelle, co-chaired the Waterloo Region WALK-IT for Parkinson’s in 2016.

Last year’s event was both intimidating and exhilarating. New to the volunteer walk committee, M&M didn’t know what to expect in terms of turnout, timing and dealing with the terrible weather. But everyone - volunteers, walkers and families, sponsors, as well as our MC and DJ - were so supportive and encouraging that M&M are back for year two.

Being involved with PSSO is a natural progression for both Marisa and Michelle. They were very close to Dad/Popsy and he set the standard for volunteering one’s time. Bill Renaud was well known in their community as the ‘go to guy’ for fundraising. He volunteered for Heart and Stroke and the St. Mary’s High School Capital Fundraising Campaign. He was also President for both the KW Oktoberfest and the Twin Cities Kiwanis Club to name a few. Before Parkinson’s took away his ability to walk, talk and (his favourite) eat, Bill Renaud always said ‘yes’ to whoever needed help. So, volunteering with PSSO is Marisa and Michelle’s way of honouring and connecting with Dad/Popsy even though he is no longer with them.

Team Popsy will walk yet again in the 2017 Waterloo Region WALK-IT for Parkinson’s in September. Popsy’s beloved wife Donna, who has Chronic Obstructive Pulmonary Disease (COPD), will do her best to get around the track at least a few times before she joins the cheerleaders in the bleachers.

Marisa and Michelle are both inspired by the people they have met who live with Parkinson’s by living their lives to the best of their abilities with hope and determination. M&M’s wish is that their volunteering, with the money raised at their local walk, helps to find a cure for Parkinson’s and provides support for those living with Parkinson’s and for their family members.

Volunteerism

Marisa (left) and Michelle (right) pictured with Waterloo Mayor Dave Jaworsky at the 2016 Waterloo Region WALK-IT for Parkinson’s.

2016 Volunteer of the Year: John Scott

Volunteers are vital to Parkinson Society Southwestern Ontario’s positive growth and ability to fulfil our mission. Volunteers bring light and life as they raise awareness and funds in the communities in which they live and work, often inspiring others to do the same.

John Scott received a number of nominations from the Sarnia-Lambton community for his long-term dedication to helping those affected by Parkinson’s. Some of John’s volunteer contributions include facilitating the Sarnia-Lambton Parkinson’s Support Group for 33 years, running the walk for 20 years, leading a weekly exercise group, as well as directing people to resources, workshops and conference opportunities.

Thank you John for your tremendous contributions to the Parkinson’s community!!!

Ontario Volunteer Service Award Recipients

The Ontario Volunteer Service Awards recognize volunteers for their undeniable contributions and continuous years of service in each support group area. Thank you to the following volunteers for their years of service:

Susan BridgesCarol CoulterJanice DuntJane HaskellNorma KempersAnne KinzieCarol McDonnellCathy McDowell

Karen RileyAndy RobertsonNorma SapsworthJohn ScottAmanda StarkKaren YoungBeverley Zaifman

John Scott has been a facilitator for the Sarnia-Lambton Parkinson’s Support Group for 33 years. John started the support group with his wife Bea who lived with Parkinson’s for 25 years. He has also been very active running the Sarnia-Lambton walk for 20 years and has helped create awareness of Parkinson’s in the community. He is admired for his leadership, energy, generosity, commitment and inspiration. John will continue to be active with the Parkinson’s exercise group. Thank you John for your many years of dedicated service!

Welcome Carolyn and Ron Young to the leadership role of the Sarnia-Lambton Parkinson’s Support Group. Carolyn was diagnosed with Parkinson’s in 2012 and immediately sought out the local support group and exercise class. Both Carolyn and Ron bring work and volunteer experience that will help them in their new roles. Carolyn and Ron have developed many wonderful friendships while attending their local support group and anticipate more caring and sharing in the future. Together, they strive to encourage, make information accessible to all and offer support in the journey with Parkinson’s.


Support Group News

Cambridge Parkinson’s Support Group

Welcome Ashley Fox as the new co-facilitator for the Cambridge Parkinson’s Support Group. Ashley has been working as a Registered Practical Nurse since 2010. Currently, she is working for Retire-At-Home Services as their Community Outreach Coordinator. Ashley is also involved in WALK-IT for Parkinson’s and A Hair Affair for Parkinson’s. Her passion to help those living with Parkinson’s will be greatly appreciated by the Cambridge Parkinson’s Support Group!

Kitchener Parkinson’s CarePartner Support Group

Welcome Pat Deitner and Dee Kennedy as they begin a new Kitchener Parkinson’s CarePartner Support Group. Pat is a retired business owner who enjoys gardening, pole walking and helping others. Dee is a retired nurse who has experience in the Kitchener community, including Director of YWCA, volunteering at Sunnyside Home and leading pole walking exercises through her business, Polercise. We are grateful to have both women on board!

Kitchener Parkinson’s Support Group

Welcome Pat Cunningham our new Kitchener Parkinson’s Support Group facilitator. Pat has been involved in a wide variety of not-for-profit groups throughout her life (YWCA, United Way, Hospice of Waterloo Region, CFUW K-W, Meals on Wheels, to name a few). Pat and her husband, Bill, are participating in the Rock Steady Boxing program at the Kitchener YMCA, and meeting others living with Parkinson’s. As a facilitator for the support group, she looks forward to learning and sharing more about this disease and the challenges it will present for her husband in the years to come. Warm welcome Pat as we are happy to have you!

Leamington Parkinson’s Support Group

After two years as facilitator, Laurie Stone will be stepping down from her role for this weekly group. Laurie is passionate about exercise and we are thrilled to see her move on with VON and lead VON SMART Exercise Programs to those living in Windsor-Essex. Laurie assures us that this is not a good bye to Parkinson Society Southwestern Ontario. We will look forward to our paths crossing again. All the best Laurie!

Sarnia-Lambton Parkinson’s Support Group

Individuals are encouraged to contact the Regional Office at (519) 652-9437 (London) or 1-888-851-7376 before attending their first meeting.

Brantford

Cambridge

Chatham-Kent

Brantford Parkinson’s Support GroupFacilitator: Bill Flintoff

Cambridge Parkinson’s Support GroupFacilitators: Regional Office & Ashley Fox - Volunteer Co-Facilitator Required!

Cambridge YMCA Neurological WellnessExercise Programs

Chatham-Kent Parkinson’s Support GroupFacilitator: Lisa Clarke - Volunteer Co-Facilitator Required!

Dunnville Parkinson’s Support GroupFacilitator: Stacey Kiefer

Chatham-Kent Parkinson’s SMART Exercise Program

Chatham-Kent Parkinson’s Sharing and Caring (Luncheon Group)Facilitator: Jane Haskell

2nd Wednesday of each month (excluding July & Aug.) 2:00 p.m. to 4:00 p.m.John Noble Home, 97 Mount Pleasant Rd., Brantford

2nd Thursday of each month (excluding July & Aug.) 1:00 p.m. to 2:30 p.m.Maranatha Christian Reformed Church, 94 Elgin St. S., Cambridge

3X/wk., free for YMCA members, $30 + HST/month for non-membersChaplin Family YMCA, 250 Hespeler Rd., CambridgeCall Marc Demers, (519) 623-9622 ext. 242.

2nd Tuesday of every other month (excluding July and Aug.) 6:30 p.m. to 8:30 p.m.Active Lifestyle Centre, 20 Merritt Ave., Chatham

3rd Friday of each month 1:30 p.m. to 3:00 p.m. Haldimand War Memorial Hospital (Mailloux Room), 206 John St., Dunnville

Every Tuesday & Thursday 10:00 a.m. to 11:00 a.m.Grace Christian Reformed Church, 255 Tweedsmuir Ave. W., ChathamCall Steven Bottrill or Bria Atkin (519) 352-4462 ext. 5222/5225.

2nd Tuesday of every other month (from Feb. to Dec.) 11:30 a.m. to 1:00 p.m.Active Lifestyle Centre, 20 Merritt Ave., ChathamNote: luncheon group

Regional Support Groups

Hanover

Goderich-Huron

Kincardine

Grand Bend

Goderich-Huron Parkinson’s Support GroupFacilitator: Carol McDonnell

Grand Bend Parkinson’s Support GroupFacilitator: Kate Mason - Volunteer Co-Facilitator Required!

Young-Onset Parkinson’s Coffee ClubFacilitators: Carol Kraft & Michelle Napper

Hanover Parkinson’s Caregiver Support GroupFacilitator: Jane Radke

Hanover Lunch GroupFacilitator: Linda Byers

1st Tuesday of each month (excluding Jan. to March) 1:30 p.m. to 3:00 p.m.MacKay Senior Centre, 10 Nelson St. E., Goderich

Last Tuesday of each month 1:30 p.m. to 3:00 p.m.Grand Bend Area Community Health Centre (Adult Day Program Room),69 Main St. E., Grand Bend

2nd Tuesday of every month from April – November For details contact Carol Kraft at (519) 901-0061 or Michelle Napper at (519) 366-2306.Caregivers/carepartners are welcome to attend.

4th Wednesday of each month 1:00 p.m. to 3:00 p.m.Tommy D’s Restaurant, 294 10th St., Hanover

1st Tuesday of the month for lunch. 12:00 noon to 1:30 p.m. Coach House restaurant at Hanover Raceway, 265 5th St., Hanover

Kincardine Parkinson’s Support GroupFacilitator: Norma Kempers

2nd Tuesday of each month (excluding Jan. and Feb.) 12:00 noon to 2:00 p.m.Malcolm Place Retirement Residence, 255 Durham St., KincardineNote: Coffee and tea are provided. Members are responsible for their own lunch.

KitchenerKitchener Parkinson’s Support GroupFacilitators: Regional Office & Pat Cunningham

4th Tuesday of each month (excluding July, Aug. and Dec.) 10:30 a.m. to 12:00 noonForest Heights Long-Term Care Centre, 60 Westheights Dr., KitchenerNote: Lunch is no longer provided.

Evening Kitchener Parkinson Connection Support GroupFacilitators: Pamela Helmes-Hayes & Deb Stanson

3rd Thursday of each month (excluding July, Aug. and Dec.) 6:30 p.m. to 8:00 p.m.Reformation Lutheran Church, 456 Krug St., Kitchener


Dunnville

Kitchener Parkinson CarePartner Support GroupFacilitators: Dee Kennedy & Pat Deitner

3rd Monday of each month (excluding July & Aug.) 1:00 p.m. to 2:30 p.m. Rockway Centre, 1405 King St. E., Kitchener. Meeting held in King Street Room.

Kitchener Rock Steady Boxing at the A.R. Kaufman Family YMCA Two levels of classes offered. 2-4 classes available per week depending on class level. Free to YMCA members. Boxing gloves required and can be purchased at a discount rate. A.R. Kaufman YMCA, 333 Carwood Ave, Kitchener. Call 1-888-851-7376 for more information.

LeamingtonLeamington Parkinson’s Support GroupFacilitator: Bob Prince - Volunteer Co-Facilitator Required!

Leamington Parkinson’s SMART Exercise Program

1st Tuesday of every month (excluding July & Aug.) 11:30 a.m. to 12:30 p.m.Leamington and District Half Century Club, 160 Talbot St. E., Leamington

Every Tuesday (excluding July & Aug.) 10:30 a.m. to 11:30 a.m.Leamington and District Half Century Club, 160 Talbot St. E., Leamington Call Steven Bottrill 519-352-4462 ext. 5222.

Kitchener Parkinson’s SMART Exercise Program

Kitchener YMCA Neurological Wellness Exercise Programs

Every Tuesday and Thursday 1:30 p.m. to 2:30 p.m. A.R. Kaufman YMCA, 333 Carwood Ave., Kitchener. Call Community Support Connections at (519) 772-8787.

3X/wk., free for YMCA members, $30 +HST/month for non-membersA.R. Kaufman YMCA, 333 Carwood Ave., KitchenerCall Shriya Maharaj (519) 743-5201 ext. 255.

Kitchener Young-Onset Parkinson’s Support GroupFacilitator: Carolyn Pletsch - Volunteer Co-Facilitator Required!

Location Change: 3rd or 4th Thursday of every month (excluding July and Aug.). Locations alternate with each meeting. For details contact the Regional Office at 1-888-851-7376.

Meaford

Orangeville

Listowel

London

Meaford and Area Parkinson’s Support GroupFacilitator: Cathy McDowell - Volunteer Facilitator Required!

Orangeville Parkinson’s Support GroupFacilitators: Kersty Franklin & Rob Ecclestone

Listowel Parkinson’s SMART Exercise Program

London Parkinson Connection Support GroupFacilitators: Tracey Jones & Amanda Stark

London Parkinson’s Exercise GroupsRehabilitation Trainer: Bill Gold

London Parkinson’s SMART Exercise Program

London Parkinson’s Carepartner Coffee ClubFacilitator: Regional Office

London Rock Steady Boxing

3rd Tuesday of each month 2:00 p.m. to 4:00 p.m.Meaford United Church, 7 Boucher St. E., Meaford

2nd Wednesday of each month (excluding July & Aug.) 7:00 p.m. to 8:30 p.m.Alzheimer Society, 25 Centennial Rd., Orangeville

Every Tuesday and Friday 2:00 p.m. to 3:00 p.m. VON Office, 975 Wallace Ave. N., Listowel Call Lindsay Wagg (519) 291-5898.

3rd Saturday of each month (excluding July and Aug.) 2:00 p.m. to 4:00 p.m.Trinity Lutheran Church, 746 Colborne St. (Oxford and Colborne), London

Several classes offered in alternate weeks (Wed. and Thurs.) 12:00 noon to 1:00 p.m. Parkwood Day Hospital, 550 Wellington Rd., LondonNote: Exercise classes are $5 per class. Call Bill Gold (519) 685-4292 ext. 42765.

Every Monday and Thursday 2:00 p.m. to 3:00 p.m.Carling Heights Optimist Community Centre, 656 Elizabeth St., LondonCall Kalina Adams (519) 659-2273 ext. 3289.

4th Thursday of each month (excluding July & Aug.) 2:00 p.m. to 4:00 p.m.Parkinson Society Southwestern Ontario Office, 117-4500 Blakie Rd., London

3X/wk., $80/month, boxing equipment required and can be purchased at a discounted rateBoomerz Boxing Club, 333 Richmond St., LondonCall 1-888-851-7376 for more information.

Owen SoundOwen Sound Parkinson’s Support GroupFacilitator: Bevan Lougheed

Owen Sound Parkinson’s SMART Exercise Program

2nd Tuesday of each month 2:15 p.m. to 3:30 p.m.The New Life Centre, First Christian Reformed church, 199 - 4th Ave. W., Owen Sound (New Location)

Every Tuesday and Thursday 1:00 p.m. to 2:00 p.m.First United Church, 435 21st St. W., Call Emma Coburn at (519) 376-5895 ext. 404.


Woodstock

Windsor

West Lorne

Tillsonburg

Woodstock Parkinson’s Support GroupFacilitator: Mary Jane Schurman

Windsor Parkinson’s Support GroupFacilitator: Patricia St. Pierre

West Lorne Parkinson’s Support GroupFacilitator: Betty Jo Drent

Tillsonburg Parkinson’s Support GroupFacilitator: Anne Marie Wallace Phillips

St. Thomas Parkinson’s SMART Exercise Program

4th Monday of each month (excluding July and Aug.) 2:00 p.m. to 4:00 p.m.UNIFOR, 126 Beale St., Woodstock

4th Tuesday of each month (excluding Dec.) 7:00 p.m. to 8:30 p.m.Windsor Community Living Support Services, 7025 Enterprise Way, Windsor

4th Thursday of each month (excluding Aug.) 10:30 a.m. to 12:00 noonThe Hub, 146 Munroe St., West Lorne

3rd Thursday of each month (excluding July and Aug.) 1:00 p.m. to 2:30 p.m.Tillsonburg Retirement Residence, 183 Rolph St., Tillsonburg

Every Monday and Thursday 10:00 a.m. to 11:00 a.m. Location change to Elgin Mall, 417 Wellington St., St. Thomas. Classes are free. Call Pam Buys at (519) 637-6408.

St. ThomasSt. Thomas Parkinson’s Support GroupFacilitators: Sheri Lawrence & Doug Chateauneuf

2nd Tuesday of each month (excluding July and Aug.) 2:00 p.m. to 4:00 p.m.Knights of Columbus Hall, 265 Wellingon St., St. Thomas

StrathroyStrathroy Parkinson’s Support GroupFacilitator: Regional Office - Volunteer Facilitator Required!

Parkinson’s SMART Exercise Group

Windsor Parkinson’s SMART Exercise Group

3rd Tuesday of each month (excluding July and Aug.) 2:00 p.m. to 4:00 p.m.Westmount Christian Reformed Church, 405 Drury Lane, Strathroy

Every Monday and Wednesday 1:00 p.m to 2:00 p.m. VON Middlesex-Elgin Office, 274 Head St. N., Strathroy Call Ashlynn Aspden (519) 659-2273 ext. 2267.

Every Wednesday 2:00 p.m. to 3:00 p.m. Windsor YMCA, 3400 Grand Marais Rd. E.Call Steven Bottrill or Bria Atkin (519) 352-4462 ext. 5222/5225.

Stratford

Simcoe

Stratford Parkinson’s Support GroupFacilitators: Alan & Marg Scott

Simcoe Parkinson’s Support GroupFacilitator: Marie Claire Astles - Volunteer Co-Facilitator Required!

Stratford Gentle Yoga for Parkinson’s GroupCertified Yoga Instructor: David Querin

2nd Tuesday of each month (excluding July and Aug.) 1:30 p.m. to 3:30 p.m.Army, Navy and Air Force Veterans Centre, 151 Lorne Ave. E., Stratford

4th Thursday of each month (excluding July and Aug.) 1:00 p.m. to 3:00 p.m.Alzheimer Society of Haldimand Norfolk, 645 Norfolk St. N., Simcoe

Every Monday 10:00 a.m. to 11:00 a.m.Army, Navy and Air Force Veterans Centre, 151 Lorne Ave. E., Stratford

Vision 74 Nursing Home Parkinson’s Support GroupFacilitator: Amy Chamney

Sarnia-Lambton Parkinson’s Exercise GroupInstructors: Dorothy Fyfe & John Scott

Monthly on Residence ScheduleVision 74 Chapel, 229 Wellington St., Sarnia

Every Thursday 11:15 a.m. to 12:15 p.m.Strangway Centre, 260 East St. N., Sarnia


A support group can be a very effective tool for enhancing your ability to cope with the challenges of Parkinson’s. Parkinson’s support groups can help provide knowledge, understanding, hope and a sense of community.

Sarnia-LambtonSarnia-Lambton Parkinson’s Support GroupFacilitators: Carolyn & Ron Young

4th Wednesday of each month (excluding June, July and Aug.) 2:00 p.m. to 4:00 p.m.Clearwater Arena Community Room, 1400 Wellington St., Sarnia

Trillium Villa Long-Term Care Parkinson’s Support GroupFacilitator: Cindy Slegers

Monthly on Residence ScheduleTrillium Villa Activity Room, 1221 Michigan Ave., Sarnia


September2 Parkwood Education Program (London)

For further information, please call Terri Lebate: (519) 685-4292 ext. 42202 2017 Dates: September 8 – October 13; November 3 – December 8

9 WALK-IT for Parkinson’s (visit www.walk-it.ca for more details)

Brant-Norfolk – Mohawk Park Goderich – St. Christopher’s Beach (between Main Beach and Rotary Cove)

London and District – Springbank Gardens Orangeville and Area – Alder Street Recreation Centre South Grey Bruce and Hanover – Hanover Town Park Stratford and Area – Upper Queen’s Park Waterloo Region – Resurrection Catholic Secondary School

10 WALK-IT for Parkinson’s

Chatham-Kent – Kingston Park Owen Sound – Harry Lumley Bayshore Community Centre (new location)

Oxford County – South Gate Centre Port Elgin, Kincardine and Area – North Shore Park, Saugeen Shores Strathroy – Strathroy Seniors Centre Windsor-Essex – Malden Park (Malden Road entrance)

17 WALK-IT for Parkinson’s

Sarnia-Lambton – Stoke’s Bay Grill & Bar

20 Living with Parkinson’s: Is There a App for That? Webinar

Dr. Liliana Alvarez & Dr Michael Ravanek 12:00 noon – 1:00 pm Register online at https://parkinsonsociety.ca/event/webinar-living-parkinsons-app/ 20 Parkinson Quebec Webinar: Labour Laws

What labour laws apply for someone living with Parkinson’s 1:00 pm – 2:00 pm

August4 Summer BBQ Hosted by BATH FITTER

150 Exeter Road 11:30 am – 1:30 pm

16 Parkinson Quebec Webinar: Travelling

How to prepare to travel when you have Parkinson’s Isabelle Ducharme 1:00 pm – 2:00 pm

October18 Caregiver Workshop (Windsor)

Holiday Inn & Suites Ambassador Bridge, LaSalle Room 1855 Huron Church Road, Windsor 10:00 am – 3:00 pm Free admission; Lunch included Register online at https://parkinsonsociety.ca/event/carepartner-workshop-windsor/ or call 1-888-851-737

18 Parkinson Quebec Webinar: Autonomy

How to maintain autonomy with Parkinson’s 1:00 pm – 2:00 pm

November4 Annual Hessenland Country Inn Novemberfest

72981 Bluewater Highway, RR 2 Zurich ON Time: 6:00 pm Cost: $50 per person Proceeds from the silent auction go to Parkinson Society Southwestern Ontario For more information, call 1-866-543-7736

11 Fall 2017 Regional Parkinson’s Conference (London)

The Hellenic Community Centre 133 Southdale Rd. W., London (see page 19 for details)

15 Parkinson Quebec Webinar: Sexuality

How to maintain an intimate life when you have Parkinson’s 1:00 pm – 2:00 pm

December6 Holiday Open House 2:00 pm – 4:00 pm Parkinson Society Southwestern Ontario Regional Office 117-4500 Blakie Road RSVP by calling (519) 652-9437 or 1-888-851-7376

20 Communications in Parkinson’s Webinar

Angela Roberts 12:00 noon – 1:00 pm Register online at https://parkinsonsociety.ca/event/webinar-communications-parkinsons/ 20 Parkinson Quebec Webinar: New Research

Update on new research in Quebec 1:00 pm – 2:00 pm

2017 RegionalParkinson’s Event Calendar

For more information, to register or to become involved in our special events,

go to www.parkinsonsociety.ca, call 1-888-851-7376 or email [email protected].

In Memoriam We offer our sympathy to the families whose loved ones have passed away between December 23, 2016 and May 31, 2017.

We make every effort to include all members who have passed away. We sincerely apologize if any individual was inadvertently omitted from the above list. Please call and let us know if we have missed anyone and we will include their name in our next issue.

Rob AarssenElenore AlbrechtJune AllmanMildred AmlinRichard AppellStan AshbyLisa AutioWillis BallMarlene BeaudoinGreta BedwellWillnah BennettEwald BierbaumShirley BlaneyKenneth BlueHenriette BoomerJim BootsmaJaine BoughnerBettyanne BradfieldRuby BradleyPaul BrayJames BridleRonald BrouwerBill BrunnerNoah Butcher-HagellFrances ButlerFrank Caiger-Watson

James CassidyMariette CausynRaymond ChandlerHarvey ChapinWilliam ChildsJo-anne ChristensenMiao ChunPakPeter CoholanLillian CompanionRoy CookDonald CorkerDoris CoulsonVictor CrossBob DavisBarbara DeBuckGuiseppe DigangiFrederick DobbsGeorge DryburghJames DunningCarl EechauteRonald EnglishAgnes FerynJohn FiggBob FlemingRoy FowlerJohn Gardner

Jerry GerrieFrederick GobbiGideon GreenJack GreenPhilip GrieveLeona GrobeFilippo GualtieriMerle GunbyMary GyoriLeta HansonClifford HarnackMarilyn HarringtonJohn HarwoodKathleen HaynesDouglas HewittJean HickmanEileen HicksonBeatrice HoglundBarbara HohnerRobert HopperLaura HumphreyDavid HuntGrant KeayWilliam KellMary KnightCarol Kocsis

Edmund KopfJosephine LabenskiShirley LafontaineWilliam LahnMabel LeCourtoisDr. Rudy LeiboldHilbert LempNeil LeonhardtAnnie LeslieRobert LevequeMary LordGerald LundyJoe MacartneyLorraine MacKinnonWilliam MacVicarRonald MahonFrederick MalesFrank MaloneyLeon MaloneyRita ManleyFrank MarcellaJames MasonGiustiniano MatteiLyle MatthewsElizabeth McAlpineRoss McComb

Kathleen McTavishArie MerkestynBrian MielkeRonald MillsIrma MoeyaertJessie MoffatSanta MonacoPatricia MonneAngela MostreyPeter MullenRalph MulliganMarjorie MunnochJoseph MurtaghEvelyn NashPatricia NoelAnna NotarandreaVelma OfieldIsauro OliveiraIvan PaffDonna ParkerRaymond ParkinsonLloyd PateFrederick PeddleMurray PennellAudrey PennyRobert Pietersma

Beryl PineAbdemannan Poon-awallaRichard PotwarkaMaria PuccioJean PulleyColetta PypersFrank RaceyDennis RalstonJo-Anne RegisExilia RenaudMarg RevellFrank RobakRobert RobbinsAda RowlandCecilia RyanNedjo SavicGeorge SniderIsabelle Spilsbury Frieda SpruyttePeter StamfordEmma StoepkerFrances StothartElizbeth StrobliMary SullivanJoseph Szarka

William TaylorNewton ThomasMeryl TunksFlip VandersluisBill VanrooyenDavid VarleyAnton VuksanScott WaldonDavid WandShirley WarrilowEdith WellwoodDon WengerRichard WestKen WhalenMargaret WilsonRev. Charles WilsonEdward WitherstoneGhislaine WydoogheRobert ZimmerAntoni Zurek


When you make a gift of securities, you not only benefit from the tax credit but you also avoid paying tax on capital gains accumulated on the securities. In order to take advantage of the capital gains tax reduction, you need to donate the securities directly to PSSO rather than selling the securities and donating the proceeds of the sale.

If you own publicly traded securities or mutual funds, you may want to consider donating the securities or mutual funds directly to Parkinson Society Southwestern Ontario.

For more information, please contact Shelley Rivard at 1-888-851-7376 or [email protected].

Why Give Securities

or Mutual Funds?

CarePartner Workshop (Windsor)Wednesday, October 18, at 10:00 a.m. to 3:00 p.m.

Holiday Inn & Suites Ambassador Bridge (1855 Huron Church Road)

Presentations Include:Home Instead: CarePartner Stress | Hidden CarePartner Emotions

Community Care Access Centre: Accessing CareKrista Schneider: CarePartner Art

Free Admission – Lunch Provided – Everyone Welcome

Register Today!Online: www.parkinsonsociety.ca | Phone: 1-888-851-7376

Recycle and Create AwarenessWhen you have finished reading this newsletter, please pass it on by leaving it in libraries, waiting rooms in doctors’ offices or pass it along to a friend.

Volunteer Today!

Help Us Reach New Heights ... Volunteer Today!

Call 1-888-851-7376 or email [email protected] find out about volunteer opportunities in your community.

Volunteers make a difference! Thank you to all our volunteers, salons and stylists for helping to make A Hair Affair for Parkinson’s a success this past April. A Hair Affair for Parkinson’s – It’s Not Cheating if it’s for a Good Cause.

Volunteers Erin Captstick, Chelsea Cuzzocrea, Beverly Kemp and Breanna Lalonde prepare to welcome guests to

the Fifth Annual Signatures – A Taste Test of London’s Bestin Partnership with Finch Auto Group.

Volunteers from the London and District WALK-IT for Parkinson’s in Springbank Gardens. (left to right) Jane Desnoyers, Celia Hilmer,

Adam Desnoyers-Vann, Kristine Desnoyers-Vann and Miranda Mattucci. Be part of this year’s WALK-IT for Parkinson’s as a walker and/or volunteer

by visiting walk-it.ca or calling Steve Hickson at 1-888-851-7376.

Documents

TheParkinson’s Update - Parkinson Society … also have our Webinar Series providing education on a number of topics, including Living with Parkinson’s: Is There an App for That?