Inside this issue:

Client Reflectionp. 1-2

Newly Diagnosed Group p. 3

Looking forard to Spring p. 4-6

Medication InformationP. 7

Making Connections p. 7

Groups and Educationp. 8-9

New in the Libraryp. 9-10

Care-Partner’s Cornerp. 10-11

Vol.48, March 2019

Special points of interest:

HOW has Parkinson’s NOT changed my life: reflection from our friend Alf.Alf Todd, HeadWay Client

HOW has Parkinson’s NOT changed my life? No, that’s not a typo. We’ve all read articles and even books dealing with how lives have been changed and even decimated due to a positive diagnosis of Parkinson’s disease.

It has been nearly twelve years since my diagnosis, and yes, my life has changed; and not just mine but all of my friends and family. You see, whether we like it or not, we are an influence in society, either positive or negative. What effects us, effects those around us. We do, however, have a choice in how much we influence those around us.

Those closest to us are, naturally, going to be impacted the most. Let’s start from the top.

Our spouses. In our society and culture the person closest to us should be the one who said, “I do”.

My wife, Patty, and I have been married nearly 47 years. Of course Parkinson’s has and is daily, forcing us to make changes; changes in what we do and how we do them. The outcome of these changes, whether positive or negative, is largely up to us. There are days (we in the Parkinson’s world call them “off days”) when just getting through them is the best we are capable of.

Continued on next page

Reflection from our friend • Alf ToddPower of Groups• Upcoming regional and • international eventsNew - Wanted/For Sale•

Transmitter, Volume 48, March 2019 Page 2

My attitude during an “off day” will greatly affect my symptoms and will likely set me up for the next day, be it positive or negative. On these days, I work hard to be thankful and thoughtful; it’s not always easy when I’m not “firing on all cylinders” or “Off days” make both of us thankful for the “on days”. All too often, I have to play “catch-up” on the good days. Regardless of what kind of day I am having, my attitude is the deciding factor in how I influence the one I love.

Our friends. We NEED our friends; not for the purpose of using them but for emotional and social support. Shortly after my diagnosis I gave a close friend permission to “call me up” if he ever heard me complaining or just having a negative attitude. It takes a very special friend to be entrusted with that kind of duty. So far, he hasn’t had to take me up on that. When that friend says “how are you?” he isn’t just using the expression as a greeting, he is asking me how am I doing and he wants to know. Some burdens require extra help to carry and a good friend is priceless. With that being said, if we DUMP on everybody, we may find our best-friends list diminishing. Be open and honest with friends, without being a constant host to a pity party.

In my life there is yet one closer than my wife or my friends. I promise not to preach a sermon here, but I just want to say that my Christian faith is where I draw great strength to get me through each day.

How has my Parkinson’s affected or how has it not affected my life? Though my abilities to do most anything has greatly diminished, I have learned to be more compassionate and understanding, reaching out to others and thereby making my life more meaningful. I would not have been able to help others was it not for my diagnosis?

Smile lots, it makes others think you’re up to mischief. Laugh lots and they’ll think you’re drunk. Reach out to help them and you’ll have a new friend. Blessings, Alf Todd

Transmitter, Volume 48, March 2019 Page 3

Is there a name for that sensation?Madelaine Ross, RPN MSc, Parkinson’s Client and Family Care Manager

In January and February a number of people with recent diagnoses of Parkinson’s disease participated in a series of semi structured group education sessions hosted by a Parkinson’s Mentor and HeadWay’s Parkinson’s Client and Family Care Manager. While each member to the Parkinson’s community will have an individual experience they will also share some common sensations and experiences. It can be challenging to describe an unfamiliar sensation or experience. For some participants in the New Diagnosis Series it was the first opportunity to speak at length about PD with other people experiencing PD symptoms. The series began with an introduction to PD and some of the motor and non-motor symptoms. Half of the participants described experiencing a sensation as ‘internal tremors’, ‘vibrating on the inside without actual tremors’, ‘a need to move or leave’. The experience was clearly new, unpleasant, and impacted negatively on day to day activities. The group mentor named this sensation by its medical term Akathisia. Akathisia is defined as an inner-restlessness or inability to comfortably sit still. There was evident relief in having a name for the sensation, recognizing it as a symptom of PD, and learning that it was an experience shared by others. Having a name for the experience now means that these individuals can use the term Akathisia precisely when speaking with health providers. Naming sensations can be a powerful step in the journey with Parkinson’s.

Learning the language of Parkinson’s is just one of the benefits of meeting other people diagnosed with Parkinson’s. Participants in this series learned some information, traded stories, experiences, shared resources, engaged in problem solving, asked and answered questions with the facilitators and each other as part learning process. It is a powerful experience to engage in a new experience with strangers and gain strength from the shared experience of people who understand what it means to feel tremors on the inside or the on the outside. At the close of the last session the group decided to meet again in a month.

New Diagnosis Group Education Series: Mondays 5 p.m.-6:30 p.m. April 15th – May 20th

Register by e-mail at parkinsons@vepc.bc.ca or call Madelaine at 250 475 6677 limited to 10 participants

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Medication Consultation and Support Pharmacist consultation

Amy Tran community Pharmacist will continue offering medication consultations one afternoon per month. If you would like to book a consultation please call 250-475-6677

Looking forward to Spring

Spring Webinars

Are you interested in a joining a webinar with your peers in Victoria or need access to the technology HeadWay can help with that.

Parkinson’s Society BC Ask the Expert Webinar: Genetic Discovery to Therapeutic TargetTuesday, March 12, 2019 10:00am – 11:00am

Join us on March 12, as neuroscientists Jordan, Follett & Emil Gustavsson from the University of British Columbia investigate the role of the retromer complex, a sorting network within brain cells that may position particular proteins within cells. Their working theory is that when genes within the retromer complex are mutated, they could be misplacing specific proteins within dopamine-producing cells — the main cell type lost in Parkinson’s disease — ultimately causing them to die. If they can validate this theory, it could lead to new avenues for drug discovery and early disease detection.

The following Parkinson’s Canada sessions will be available on request:

April 16, 2019Act on Time: A Parkinson’s Resource ToolkitNeli Gontier

May 28, 2019Non-Motor Fluctuations of Parkinson’s Disease Dr. Galit Kleiner

Transmitter, Volume 48, March 2019 Page 5

Regional Conference, Victoria

Parkinson’s disease is a unique and complex condition. To assist in expanding your knowledge of the disease, on March 2nd, Parkinson Society British Columbia will host an afternoon of learning in Victoria.

Our regional conferences are immersive and interactive opportunities for people affected by the disease to learn from leading experts while connecting with the Parkinson’s community.

Topics covered at this conference will include:

Frequently Asked Questions: Dr. Tara Rastin, Movement Disorder Specialist from the Pacific Parkinson’s Research Centre

Speech and Technology: Susan Edwards, Registered Speech-Language Pathologist

Research Updates at Pacific Parkinson’s Research Centre: Emma Kiss, Research Assistant and Michelle Doo, Research Coordinator

Visit the PSBC website for more info and Conference

Fees. www.parkinson.bc.ca

Date: Saturday, March 2, 2019

Time: 1:00 p.m. – 4:30 p.m. (Registration begins at 12:30pm)

Location: Sandman Hotel2852 Douglas Street, Victoria

Are you planning on attending a regional or international event in 2019?

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5th World Parkinson’s Congress in Japan?

Let us know if you are and we can connect you with others in our community.

Each Congress brings together physicians, neuroscientists, a broad range of other health professionals, care partners, and people with PD (PwPs) for a unique and inspiring experience. Cross pollinating members of the community is important in the effort to expedite the discovery of a cure and cultivate best treatment practices for this devastating disease. (www.wpc2019.org)

Transmitter, Volume 48, March 2019 Page 7

Medication Information Sinemet supply shortages have affected many people within the PD community. According to Health Canada the current status of Sinemet supply updates:

Sinemet CR 200/50 Shortage reported due to manufacture supply issue

Sinemet 100/25 Shortage reported due to manufacture supply issue

Did you know that there is a public access website for Health Canada Drug shortage reporting? There is updated information on anticipated drug shortages and estimated dates for resupply can be found at www.drugshortagescanada.ca/shortage/57129

Making Connections

Looking for adviceAre you using Neuro Patch? A HeadWay client wants to know and get in touch. Call Madelaine at 250-475-6677

Wanted/For SaleSome clients asked for a HeadWay dedicated space to share wanted/for sale items that might the helpful to other PD clients like walkers, scooters, hiking poles, exercise balls...If you would like us to post to our website please e-mail help@vepc.bc.ca1) Description2) Price3) Photo if available4) Contact info

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Join a group! Connect with others with Parkinson’s

We have ongoing Parkinson’s peer support groups, care-partner groups, discussion and education groups. Call to register 250-475-6677

Peer-led Support Groups

Victoria Parkinson’s support group2nd Monday monthly 10:30-noonThe Victorian at McKenzie, 4000 Douglas St., Victoria, BC

Younger Onset PD group Every 2 months on the 4th Tuesday of the month 1:30-3:30pmThe Victorian at McKenzie, 4000 Douglas St., Victoria, BCNext meeting will be April 23, 2019

Sidney Saanich Parkinson’s Support groupLast Friday monthly 2:00-3:30pmSaanich Peninsula Presbyterian Church, 9296 East Saanich Rd., North Saanich, BC

Peer-led groups for Care-Partners of people diagnosed with Parkinson’s

Victoria Care Partner group 3rd Friday monthly 2-3:30pm Yakimovich Wellness Centre 1450 Hillside Ave., Victoria, BC

West Shore Parky Partners group Last Wednesday monthly 1:30-3:30pmAlexander Mackie, 753 Station Ave. Langford, BC

Sidney Saanich Spouses and Family group Last Friday monthly 2:00-3:30pmSaanich Peninsula Presbyterian Church, 9296 East Saanich Rd., North Saanich, BC

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Facilitated Discussion and Education Groups

Topics:March – Personal Planning with Morrie BaillieApril – Dietician Jenneke Van HemertMay – Financial PlanningJune – Communication with Parkinson’s

Locations:1st Tuesday of the month from 1:30-3:30pmSaanich Peninsula Presbyterian Church, 9296 East Saanich Rd, North Saanich, BC

OR3rd Tuesday of the month from 1:30-3:30pmAlexander Mackie, 753 Station Ave. Langford, BC

New in the Library

So, I’ve got Parkinson’s disease, by Terry Rummins, Troubador Publishing, U.K. (2013) Publisher’s summaryTerry Rummins was diagnosed with Parkinson’s 10 years ago. So, I’ve Got Parkinson’s Disease is her story and covers her diagnosis and the progression of the condition – from the first warning tremors in her right hand to her day-to-day life now.

When Terry was first diagnosed she didn’t know what to expect, veering wildly between visualising herself in a wheelchair within a few months and not really believing that there was anything wrong with her.

Parkinson’s is a paradoxical disorder. ‘On’ and ‘Off’ are terms used to describe the regular and debilitating changes the Parkinson’s person can experience as a result of the interaction between symptoms and medication: from feeling well to the feeling of having aged twenty years in as many minutes. Terry stresses the importance of learning which symptoms are a result of the Parkinson’s itself, which are the results of taking particular drugs and which are as a result of environmental factors such as stress and diet.

Continued on next page

Transmitter, Volume 48, March 2019 Page 10

Terry has written this book in the hope that describing her experience will benefit others who have been diagnosed with Parkinson’s and to help them understand their expectations of how the condition may affect them. This is a candid story, told with humour and contains a positive message for those recently diagnosed and those close to them. It is also for anyone interested in what happens when life presents an unpleasant surprise.

Care-Partner’s Corner

Parkinson's can impact the lives of families in powerful ways. HeadWay helps support families in understanding these health conditions and in developing coping strategies that help them care both for themselves and their affected loved ones. We serve families through individual consults by phone, e-mail, or by appointment; and conduct workshops specially designed to address the family needs. We also offer care-partners support groups, peer connections, quality resources, and community referrals. Please contact us for information about what services and supports may suit your needs.

We also work with other like-minded organizations to support HeadWay clients:Continued on next page

Transmitter, Volume 48, March 2019 Page 11

Family Caregivers’ NetworkVisit the Family Caregivers’ Network website www.familycaregiversbc.ca or call 250-384-0408.

We are truly grateful to family volunteers who have set up peer support groups locally. It can be magical what happens whenever people with a common experience come together to share and learn from one another. There are 2 local peer support groups for family members of those with Parkinson’s. Whether you consider yourself to be a caregiver, a care partner or a family member, we know that Parkinson’s can impact on the lives of loved ones as well. We also know that 24/7 responsibilities can put family at risk of burnout. Much has been written about the need for self care among all family who live with Parkinson’s. This is easier said than done, especially for natural caregivers who tend to focus on the needs of others before their own.

Community Health Program – Island Health Region

The Community Health Program provides a variety of clinical staff and supportive services to enable individuals with health-related problems to remain independent in their own homes. Individuals living at home on Vancouver Island, the Gulf Islands, and other communities in BC, as well as hospitalized individuals outside the South Island area, who require health care services in their home, are initially assessed by a Registered Nurse from the Central Intake program. Anyone in the community can refer to Central Intake by calling the General Inquiries Line at 250-388-2273, 1-888-533-2273. Individuals in South Vancouver Island hospitals who require continuation of health care services in their home upon discharge are assessed at the bedside by a Home and Community Care Hospital Case Manager. Hospital clinical staff will refer individuals to the Case Manager. Potential services include: home support bathing and dressing as well as respite care, adult day programs and care facility services.

HeadWay - Care-Partner SupportTo connect with one of the HeadWay Peer-led groups for Care-Partners that currently meet in Victoria, West Shore or Sidney please connect with Madelaine at 250-475-6677 or parkinsons@vepc.bc.ca.

Our care-partner groups are led by dedicated and caring volunteer facilitators. On behalf of the entire HeadWay Parksinson’s community, our donors and staff & board we extend a heartfelt THANK-YOU for all they do to keep care-partners connected, smiling and informed.

Our newsletter and education meetings provide a range of information which does not necessarily reflect the views of our agency. Please use your discretion and consult your physician.

Canadian Mail Publications Agreement #40050532 Return Undeliverable Canadian Addresses to: Victoria Epilepsy and Parkinson’s Centre Society 202-1640 Oak Bay Avenue, Victoria BC, V8R 1B2

HeadWay - Victoria Epilepsy and Parkinson’s Centre is you local HUB for our Parkinson’s community. We were established in 1982 and feel privileged to be part of this community, providing support, care, knowledge to over 1000 people.

For more information about HeadWay, the services we provide, or Parkinson’s please contact:Madelaine Ross at parkinsons@vepc.bc.ca

For more information on how to make a donation please contact:Tania Fritz at tfritz@vepc.bc.ca