Vol. 29 4th Qtr, Oct 2012 2nd Annual Walk in the Park for...

Contact813 Darwin AvenueVictoria BC V8X 2X7Phone: 250-475-6677Fax: 250-475-6619Email: [email protected]: www.vepc.bc.ca

Inside...Coordinator’s Update 2

Vol. 29 4th Qtr, Oct 2012

Upcoming Meetings 3

Genetic Research by Dr. Matt Farer 5

Active Healing 6

Research News 8

Changes to Disability Assistance Program 10

Sharing the Journey 12

Caregivers’ Corner 13

What’s New on the Web 14

Agency Update 15

2nd Annual Walk in the Park for Parkinson’s

Our 2nd annual Walk in the Park for Parkinson’s campaign was a great success. We had three days of celebration for our walks in Victoria, Sidney and Colwood. Together we raised almost $11,000 in support of the services that the VEPC provides to our Parkinson’s

clients.

In Victoria, we started our walk with a warm-up with Lindsay Beal before heading out along the Lochside Trail from our offices to Quadra Street and back. Our Sidney walk was opened by

Sidney Councillor Ken Podmore and our path took us on a loop from Tulista Park into downtown Sidney and back again. And our walk in Colwood once again was around the beautiful grounds of Essencia to see the outdoor pieces from the Coast Collective Art Gallery. For the Colwood walk, we were visited by Max Lafontaine from Nanaimo, who demonstrated his Country Flyer (please see article on page 14).

All of our Walks are a family event for many, often with multiple generations coming to participate. We had teams, we had individuals, we had families, and we had friends all come to our Walks. The Walks provide an opportunity both for fun and comradeship among all our supporters.

The Transmitter, Volume 29, 4th Quarter, Oct 2012

Why would you take a Parkinson’s Chronic Disease Self Management Program?

By Maureen Matthew, Parkinson Program Coordinator - October 2012 NL

Hi folks. So many of us are living with chronic health conditions. You may be dealing with Parkinson’s as well as other health problems. You may be a family member with your own mix of chronic illness. Ah, the joy of aging…

At times, we think things are going pretty well with whatever our health complaint is, then there are those times when we feel

frustrated and discouraged. Sometimes, it helps to get a better handle on what’s not going well and think about what decision or choice we can make to feel like we have some control…to discover that there is something (even a small thing) that we can do to improve how our life is going. In my 23 years of service to those with PD and families, I’ve witnessed those up and down cycles in many people’s lives.

When we get down to a more detailed discussion of whatever the problem is, it’s so exciting to witness people’s relief when they discover that there is some room for improvement. They finish problem-solving on a positive note and feel a little bit better. Yes, you are so right, Parkinson’s isn’t going away (at the moment). However it’s my honor to share your journey and see the many creative approaches you come up with to cope better and move forward. We all feel alone at times, so knowing there are others on this Parkinson’s path can help. Besides, I watch the magic that happens when people with PD come together and discover new strategies from the experiences of one another.

The Chronic Disease Self Management program coordinated by UVic offers a fabulous approach to problem-solving. This is not an educational program, it’s a goal-setting program. Step 1 is to decide if you are ready and motivated to explore your part in making your life better in spite of PD or whatever health concern you wish to focus on. Gratefully, no matter what your chronic health condition, this 6 week program has something to offer. Topics include:

• Creating goals• Coping with stress • Exercise and exploring if you’ve got all the ‘bases covered’• Nutrition and checking in with your intake• Handling fatigue • Managing medication• Communicating well with your health care team

We are excited to offer you this 6 week program at the agency. Two people with PD have taken the volunteer training. Lindsay Beal will co-facilitate this series with a trained volunteer. The first series will run on Wednesdays, October 31 – December 5 from 1-3:30pm at the agency. If you want to attend, but have transportation issues, call us anyway to explore options. If you are interested but unavailable for this time frame, call Lindsay or me at 250-475-6677. Your input will help us decide where to go with this new program.

Warm hugs, Maureen

The Transmitter, Volume 29,4th Quarter, Oct 2012

Upcoming Victoria/West Shore MeetingsAll members of the VEPC are welcome to attend the following workshops and information sessions. If you plan on attending any of these sessions, please call VEPC (250-475-6677) to register.

Upcoming Information Sessions for Victoria:October 16th - Our speaker will be Karla Gallagher, talking on some of the Fine Motor Challenges of Parkinson’s that impact on normal activities of daily living, such as Restless Leg Syndrome, hand/foot tremor, fine motor control, etc. Karla is a registered physiotherapist who has spoken with us before on exercise and falls prevention. We will meet from 1:30 - 3:30 p.m. Please register by calling Lissa at 250-475-6677.

October 31 - December 5 - A 6-week program on Chronic Disease Self-Management. This will be pre-sented by the trained staff and volunteers of the VEPC to offer this information specific to people with Parkinson’s and to all of our members. The meetings will be held each Wednesday for 6 weeks. Please contact Maureen or Lindsay if you are intereseted in registering for this program.

November 13th - With all of the recent information available on Sinemet and other Parkinson’s medica-tions, this session will be on Parkinson’s Medications: the Old, the New, the Changes. The speaker will be announced at a later date. We will meet from 1:30 - 3:30 p.m. Please register by calling Lissa at 250-475-6677.

January 28th, 2013 - Maureen Matthew will present on Mental Health Challenges. People with PD are at higher risk for depression, anxiety, changes in thinking and memory. The good news is there is help available.

Upcoming Information Sessions in the West Shore:The West Shore group will now be meeting every second month, starting in October. We meet at the old Langford Town Hall at 2805 Carlow Rd. at the junction with Goldstream Rd. The meeting is from 1:30 - 3:30 p.m., with light refreshments offered. No registration is necessary and please feel welcome.

October 25th - Please note the change in day for our regular meetings. We will now meet on Thursdays in the Spruce Room in Centennial Centre, 2805 Carlow St. We will meet at our regular time of 1:30 - 3:30. Our first topic of the year will be on Parkinson’s Medications: the Old, the New, the Changes.

December 13th - Our speaker will be Karla Gallagher, talking on some of the Fine Motor Challenges of Parkinson’s that impact on normal activities of daily living, such as Restless Leg Syndrome, hand/foot tremor, fine motor control, etc. Karla is a registered physiotherapist who has spoken with us before on exercise and falls prevention.


Upcoming Sidney MeetingsThe Sidney group meets on the first Tuesday monthly from 2:00 - 4:00 pm at the Saanich Peninsula Presbyterian Church, 9296 East Saanich Road, Sidney (right behind the round-about to the airport). No registration is necessary to attend these meetings and we welcome everyone with PD and their caregiver or friends to our meetings. We ask for a small donation to cover the cost of renting the hall.

Parkinson’s Exercise Program NewsExercise programs are now open to registration by couples— a great way to keep motivated! We offer two types of classes at two different venues: 1. Silver Threads classes are a seated/standing combo on Monday and Thursday, 1:00-2:30 pm.2. Cedar Hill seated classes are

Tuesday and Thursday from 11:30 a.m. -12:30 pm.

We will happily book HandyDART transport for you. Please make an appointment with Lindsay Beal (250-475-6677) to register for either program.

Classes are $5 for VEPC members, $6 for non-members.

Of all the exercises I have, I find this session the most challenging. I hope to keep coming. Machines are o.k. but this session really gives you a good workout including muscle stretching and strengthening and voice improvement. - Exercise Program participant

Parkinson’s Massage InreachThe West Coast College of Massage Therapy (WCCMT) offers affordable student massage for those with PD and family caregivers. Advanced students provide massages at $10/hour for those with Parkinson’s and $17/hour for family caregivers.

Please call Maureen Matthew at 250-475-6677 for more information and to discuss your eligibility.

Once your eligibility has been determined, you can then contact the college directly

November 6th - Karla Gallagher, physiotherapist, will talk on some of the Fine Motor Challenges of Parkinson’s that impact on normal activities of daily living, such as Restless Leg Syndrome, hand/foot tremor, fine motor control, etc. Karla is a registered physiotherapist who has spoken with us before on exercise and falls prevention.

December 4th - Our annual Christmas social. We have a good time with singing, games, seasonal jokes. and of course Christmas goodies. This is a very pleasant way to start the holiday season. Please all feel welcome.

January 8th, 2013 - Maureen Matthew will present on Mental Health Challenges. People with PD are at higher risk for depression, anxiety, changes in thinking and memory. The good news is there is help available.

at 250-381-9800, and follow the directions to request a “Parkinson’s Inreach” appointment.


Genetic Research by Dr. Matt Farrer at UBCA Call for Participants

About the Study:To develop new therapies for Parkinson’s

syndrome (PS), and related disorders, we need to understand the mechanisms leading to the condition. We are a group of doctors and scientists at the University of British Columbia (UBC) in Vancouver, working together to identify genetic factors that play an important role in the puzzle.

Who should be involved?People with Parkinsonism, dystonia, dementia,

or related disorders. Unaffected family members including spouses, siblings, and parents are also encouraged to participate. We are particularly interested if there is a family history of any of these conditions.

What is involved in the study?A small blood sample will be requested for

genetic analysis or you may be asked to provide a mouthwash sample. This may be obtained at a routine medical appointment. A separate study visit can be organized. A follow up telephone interview may be requested to enquire more about the medical health of you and your family. The telephone interview would take approximately 30 minutes and could be performed at your convenience.

Participants might be asked to have a neurological examination that may include looking at eye movement, motor control, speed of movement, muscle tone, and reflexes.

How do participants benefit?You will not receive any monetary

compensation for your participation in this study. However, you will have contributed to a greater understanding of Parkinson’s and related disorders.

What are the costs of participation?Study procedures will be done at no cost to you.

Expenses for having your blood drawn will be

reimbursed upon receiving your samples. If you choose not to participate, you will not jeopardize any present or future medical care or treatment.

What about my privacy?All personal health information will be kept

confidential. Clinical information and biological samples used for research will be coded with a de-identified number. Records from the study will only be used for research purposes. Results may be published in a scientific journal; however, the identity of participants will not be released. This is in keeping with UBC’s policy of patient confidentiality. This study is for genetic research, NOT genetic testing. We do not assess genetic risk. Your participation will not affect any past or future health insurance policy.

Will I know the results of this important research?

Individual genetic results will not be made available as part of the research. However, findings in total will be published in the medical literature and “lay press”. Participants will also be informed of the medical advances to which they have contributed. If a specific genetic test might benefit your diagnosis, treatment or care, your neurologist will offer this service, including pre-and-post testing counselling. For genetic testing, your informed consent and a new blood sample would be required.

Still Interested?If you wish to participate in Dr. Farrer’s research please contact the researchers at:

Pacific Parkinson’s Research CentreGenetics Research CoordinatorM36, Purdy Pavilion, 2211 Wesbrook MallVancouver, B.C. V6T 2B5 Phone: 604.822.0322 email: [email protected]


Active Healing: Exercise Class Serves People with Parkinson’s

by Canada Fuqua Source: Parkinson’s Northwest Foundation, August 15 2012

When Mark Smith read that exercise can delay symptoms of Parkinson’s, he immediately searched the Internet for books and videos that would help him create an exercise plan. As a young, active man diagnosed with the degenerative neurological condition, he was more than disappointed with some of what he saw; he was depressed. “What I found was, you sit down in a chair and you move your arms,” he said. “… That leaves you with almost no hope.”

He knew that Parkinson’s was expected to continue to weaken his body and decrease his balance and range of movement. That was six years ago. Studies since then have verified the benefits of more vigorous exercise — especially the kind that focuses on balance. But programs offering exercise specifically for Parkinson’s patients are limited, according to Dr. David Blatt.

Blatt, who is Smith’s friend and exercise partner, also has Parkinson’s. The two met six years ago and soon began a Pilates class that focused on balance. The results have been better than they expected. “For both of us,” Blatt said, “it was a turning point in that we started improving our condition instead of just slowing down how fast it was getting worse.” The improvement encouraged them to bike, take ski conditioning classes and to box — anything to keep their muscles moving.

Blatt and Smith say they are proof not only of the power of exercise but of a certain kind of exercise. Forcing the body to move faster than it wants to, performing difficult balancing exercises, juggling and playing soccer is more beneficial, Blatt said, than repetitive motions such as jogging or lifting weights.

“Fifteen years after I was diagnosed, I was afraid that I wouldn’t be able to walk,” Blatt said, “and I’m still running, playing soccer, hiking up and skiing down steep mountains.” He believes that beyond building muscle and improving balance, vigorous exercise actually stimulates the production of new nerve cells to replace some of those destroyed by Parkinson’s.

A former anesthesiologist, he opened a practice two years ago in which he consults with people with Parkinson’s. He helps them cope and he sets them up with fitness trainers. It didn’t take long before the gym became his office. Since 2010, he has been a fitness trainer for people who have Parkinson’s and other chronic illnesses. “I started teaching other people because I was inspired to do that. I wanted to share with them the benefits I had gained,” Blatt said. “We do a much more aggressive exercise program than I have heard of done anywhere for Parkinson’s,” Blatt said. “And we do not like sitting in chairs. My philosophy is, if you’re trying to help someone improve their balance, you do so walking.”


A ‘can do’ attitude is the key to a healthy lifestyle, University of Melbourne economists have determinedSource: University of Melbourne Newsroom, 14 Sep 2012

Editor’s Note: While the data for this study are specifically directed at obestiy, the information extracted from this study and the “Yes I Can” attitude can be equally applied to people with Parkinson’s or their caregivers. As the saying goes, it is what you bring to the situation that often determines what you get out of it.

Researchers from the Melbourne Institute of Applied Economic and Social Research analysed data on the diet, exercise and personality type of more than 7,000 people. The study found those who believe their life can be changed by their own actions ate healthier food, exercised more, smoked less and avoided binge drinking.

Professor Deborah Cobb-Clark, Director of the Melbourne Institute of Applied Economic and Social Research, said those who have a greater faith in ‘luck’ or ‘fate’ are more likely to live an unhealthy life. “Our research shows a direct link between the type of personality a person has and a healthy lifestyle,” she said.

Professor Cobb-Clark hoped the study would help inform public health policies on conditions

such as obesity. “The main policy response to the obesity epidemic has been the provision of better information, but information alone is insufficient to change people’s eating habits,” she said.

“Understanding the psychological underpinning of a person’s eating patterns and exercise habits is

central to understanding obesity.”

The study also found men and women hold different views on the benefits of a healthy lifestyle. Men wanted physical results from their healthy choices, while women were more receptive to the everyday enjoyment of leading a healthy lifestyle.

Professor Cobb-Clarke said the research demonstrated the need for more targeted policy responses. “What works well for women may not work well for men,”

she said. “Gender specific policy initiatives which respond to these objectives may be particularly helpful in promoting healthy lifestyles.”

The study used data from the Household, Income and Labour Dynamics in Australia (HILDA) Survey.

Economics Used to Show How a Healthy Outlook Leads to a Healthy Lifestyle


Research NewsCaffeine may ease Parkinson’s symptoms Source: Press Release, McGill University, Aug 1, 2012

Caffeine, which is widely consumed around the world in coffee, tea and soft drinks, may help control movement in people with Parkinson's. This is the finding of a study conducted at the Research Institute of the McGill University Health Centre (RI MUHC) that was recently published in Neurology®, the official journal of the American Academy of Neurology. The study opens the door to new treatment options for Parkinson's.

"This is one of the first studies to show the benefits of caffeine on motor impairment in people who have Parkinson's," stated Dr. Ronald Postuma of RI MUHC and Professor of Medicine in the Department of Neurology and Neurosurgery at McGill University. "Research has already shown that people who drink coffee have a lower risk of developing Parkinson's but until now no study had looked at the immediate clinical implications of this finding."

Caffeine - one of the most widely used psychomotor stimulants in the world - acts on the central nervous system and cardiovascular system by temporarily decreasing tiredness and increasing alertness. According to Dr. Postuma, sleepiness

is commonly associated with Parkinson's. "We wanted to discover how caffeine could impact sleepiness as well as the motor symptoms of Parkinson's such as slowness of movement, muscle stiffness, shaking and loss of balance."

The researchers followed a group of 61 people with Parkinson's. While the control group received a placebo pill, the other group received a 100 mg dose of caffeine twice a day for three weeks and then 200 mg twice a day for another three weeks, which was the equivalent of between two and four cups of coffee per day.

"The people who received caffeine supplements experienced an improvement in their motor symptoms (a five-point improvement on the Unified Parkinson's Disease Rating Scale, a rating scale used to measure the severity of the disease) over those who received the placebo," said Dr. Postuma. "This was due to improvement in speed of movement and a reduction in stiffness." Caffeine had only borderline effects on sleepiness, and did not affect depression or nighttime sleep quality in the study participants. Larger-scale studies need to be carried out over a longer period to clarify these caffeine-related improvements. "Caffeine should be explored as a treatment option for Parkinson's. It may be useful as a supplement to medication and could therefore help reduce patient dosages," concluded Dr. Postuma.

Voice algorithms spot Parkinson's By Jane Wakefield Technology reporter, TEDGlobal, EdinburghSource: BBC Health, 25 June 2012, http://www.bbc.co.uk/news/technology-18427851

Parkinson's can be difficult for those living with it and diagnosis can also be slow as there are no blood tests to detect it.

But now mathematician Max Little has come up with a non-invasive, cheap test which he hopes will offer a quick new way to identify Parkinson’s. Little has discovered

that Parkinson's symptoms can be detected by computer algorithms that analyse voice recordings. In a blind test of voices, the system was able to spot those with Parkinson's with an accuracy of 86%.

Little became interested in understanding voice from a mathematical perspective while he was studying for a PhD at Oxford University in 2003. "I was looking for a practical application and I found it in analyzing voice disorders," he told the BBC. "I didn't occur to me at the time that people with Parkinson's and other movement disorders could also be detected by the system."


Oxford researchers discover potential new treatment avenue for Parkinson'sSource: Parkinson’s UK website, 12 July 2012http://www.parkinsons.org.uk/about_us/news/news_items/all_news/shortcut_to_dopamine_release.aspx

New research, published in the journal Neuron, has uncovered a radical new way of triggering communication in the brain, which could lead to new treatments for Parkinson's.

The research, funded by Parkinson’s UK, has uncovered a new way to trigger nerve cells to release dopamine - the chemical that is lost in the brains of people with the condition. It is this loss of dopamine which leads to the development of tremors and stiffness - common symptoms of Parkinson's.

Previous research suggested that electrical activity inside nerve cells was the only way to trigger dopamine release. But this new research, led by Dr Stephanie Cragg and her team at the University of Oxford, fundamentally changes that view.

Dr Cragg's team studied dopamine release in the

brains of mice. The researchers were surprised to find that activating a small group of neighbouring cells called 'cholinergic interneurons' was enough to trigger dopamine release. This was without the need for activity in the dopamine nerve cells themselves.

Dr Stephanie Cragg comments: "Until now, we thought there was only one route to dopamine release in the brain. But our findings suggest that there may be a shortcut to triggering dopamine release through activating these neighbour cells.

"We know that in Parkinson's, the dopamine-producing nerve cells struggle to release enough dopamine to transmit the vital messages needed to coordinate movement. Current Parkinson's drugs help to boost dopamine levels but they don't help the nerve cells to release dopamine."

Dr Kieran Breen, director of research and innovation for Parkinson’s UK, adds: "The results of this study are a huge step forward in our understanding of the condition. This exciting discovery opens up much needed new areas for drug development. This could lead to medications which can improve Parkinson's symptoms. And if they reduced distressing side effects as well that would be most welcome."

Andy Grove, one of Intel's founders and ex-chief executive, was diagnosed with Parkinson's in 2000 and has funded research into it. This includes projects to monitor the symptoms. "They were using devices that recorded the voices of around 50 patients with Parkinson's," explained Little. "They had an enormous amount of data but they didn't know what to do with it. So we wondered whether my technique would work. They set me a blind test to see if I can tell them which ones had Parkinson's. I had 86% accuracy using the techniques I'd developed."

The system "learns" to detect differences in voice patterns. "This is machine learning. We train the database to learn how to separate the true symptoms of Parkinson’s from other factors."

Now he is looking for volunteers to contribute to a vast voice bank to help the database to learn even more. He is aiming to record up to

10,000 voices and has set up local numbers in 10 countries around the world. In Canada, the number is 1-647-931-5776. Anyone can call and they need to state whether or not they have been diagnosed with Parkinson’s. There is also a website where people can find out more about the project at www.parkinsonsvoice.org/

He hopes that the technology will be available to doctors within the next two years. "We're not intending this to be a replacement for clinical experts, rather, it can very cheaply help identify people who might be at high risk of having Parkinson’s and, for those with Parkinson’s, it can augment treatment decisions by providing data about how symptoms are changing in-between check-ups with the neurologist," he said.

For further information or to take the 3-5 minutes test, please go to www.parkinsonsvoice.org


Changes to Disability Assistance Programs

Scooters, Standing frames, Positioning Chairs, Non-conventional glucose meters, Inhaler accessory devices, Apnea monitors, Toe orthoses, Underliners for orthoses, Syringes for medication, A second floor-to-ceiling pole, Foot abduction orthosis, Transfer aids, Positioning items on a bed, Tracheostomy supplies, Nebulizers, Humidifiers for tracheostomy patients

New exemptions and limits for PWD

• Increasing the asset limits for individuals to $5,000 (up from $3,000)

• Increasing the asset limits for couples and families to $10,000 (up from $5,000)

• Increasing the earnings exemption for singles on PWD to $800 per month (up from $500)

• Increasing the earnings exemption for couples who both have the PWD designation to $1,600 per month (up from $750)

• Increasing the non-discretionary trust exemption lifetime limit to $200,000 (up from $100,000)

• Increasing the trust disbursement exemption for “promoting independence” to $8,000 per year (up from $5,484) and allowing the person on PWD to decide

how this money can be spent to promote their independence (rather than MSD)

• Exempting income tax refunds (previously tax refunds have been exempt to the earning exemption limit)

• Reducing the wait period for earnings exemptions to one month for new applicants, and eliminating the waiting period for PWDs returning to assistance (previously the wait period has been 3 months)

For more information and to link to the provincial government’s news release and backgrounder on restoring medical equipment and supplies. please go to:

http://www2.news.gov.bc.ca/news_releases_2009-2013/2012SD0016-000962.pdf

The link to the news release and backgrounder on changes to earnings exemptions, asset limits, and other regulations ishttp://www2.news.gov.bc.ca/news_releases_2009-2013/2012PREM0079-000835.htm

Or you can contact Advocacy Access toll free 1-800-663-1278 .

As many of you may know, changes have recently been made to some Disability Assistance programs. We received the following information from the BC Coalition of Persons with Disability. Many of the points included here may be of direct interest.

Changes to Disability Assistance Programs Effective Fall 2012

In June the Ministry of Social Development (MSD) announced a number of changes to the welfare regulations that will affect people on income and disability assistance. These changes are generally positive steps that include such things as increasing the asset limits and earnings exemptions for most people on assistance. Unless otherwise indicated, these changes take effect October 1, 2012.

On July 3, the Minister of Social Development announced that funding for some of the medical equipment and supplies that was cut in April 2010 would be restored. These changes will be implemented in October 2012.

Listed below are the new rules and benefits that impact people on disability assistance (PWD)

New medical items that will be covered by MSD:

Ventilator supplies, Bariatric


They Did It!!

We offer our compassion to the families who have lost the following loved ones and extend our sincerest

thanks to those who sent donations in their memory:

Jean Cooper, Alan Davies, Lisa Dumencu, Gloria Ferguson, Nora McCrimmon,

Fiona Parker, Rudy Polt, Ronald Brian Prior, Allan Robson, Ed Sawchuck, Bonnie St. Jacques,

Rick St. Louis, Alan Wilson

Mission accomplished! In total, The Parky's Peddlers raised $26,500.00 towards finding a cure as well as supporting those living with PD! Thank you so much for your contribution and support!

The Parky's Peddlers is a group of 16 people plus their support team who committed to help the fight against Parkinson’s. From June 8-21, 2012, they embarked on a 1,700 km bicycle trip from Victoria to San Francisco, California. With scraped elbows and faces, by sunset campfires in the evening, meeting great people along the way, and covering long roads up and down through the mountains of the Pacific Northwest coastline - they did it!!

The Parky’s Peddlers want to thank everyone who supported them - families, friends, support team members, and everyone who sponsored them towards their goal. Thank you all so very much.


Sharing the Parkinson’s JourneyBy Maureen Matthew

Over the years, I have witnessed the trials and tribulations of people with Parkinson’s and those closest to them. You didn’t ask for this, yet Parkinson’s is an unwelcome visitor in your lives. It generates a range of grief reactions of denial, frustration, and perhaps reluctant acceptance in cycles over time. And so, our agency’s core services are focused predominantly on people with PD. But what about the impact on the lives of others, (including by the way the lives of those without a close significant other…a separate subject for future coverage)?

We have been exploring development of greater family member support. I recently hosted a discussion session with a group of spouses. I so respect the intention of family to provide care and support. As I too have discovered as a caregiver, it’s never as perfect as we hope…we show our humanity and sometimes in impatient or frustrated words or behaviors we’re not proud of. It can be so difficult for a family member to forgive themselves for being human. One of the most important coping strategies is to ensure a balance of self care with care of another: a family member needs regular time to feed their own rest and rejuvenation in order to help another long term. As clinical counsellor Allison Reeves has said, “Caregiving requires both physical and mental stamina. PD is an ongoing trauma in your lives. Without regular break time, it’s unsustainable.”

Some of the greatest challenges for all involved are the varied effects of PD on mood and memory. It’s tough on a person and also on loved ones when living with depression. It feeds a negative view of

life, which can bring true suffering for both. It’s not easy to manage chronic anxiety for those with PD and for close family. It’s also a lesson in patience to deal with changes in memory for everyone involved.

The most common term people use to describe the Parkinson’s journey is frustration. Communication helps us feel connected with one another as humans. But PD makes talking

more difficult with reduced body language, reduced speech volume and a greater tendency for people with PD to isolate and say very little. Loss of natural conversation diminishes, which can leave those with PD and their family members feeling isolated and missing that connection. There is a lovely article called Journey as a Spouse written by my dear colleague, Lindsay Beal. She is a gifted professional and a joy to work with. You can read Journey as a Spouse on our

website at www.vepc.bc.ca.

I’m pleased to announce a pilot study that Allison Reeves is offering for those with PD and their family members. She will be conducting short 15-minute webcasts twice a week starting in late October: one weekly webcast will be for family caregivers; separately and also once weekly, she will offer a webcast for people with PD. Your email input to her about her webcast content will help her develop future topics that will be practical for you. This is a fabulous chance to benefit from her professional expertise, her decades of experience with MS herself and her great skill at supporting family caregivers. To register, please call me, Maureen Matthew or Lindsay Beal at 250-475-6677.


Caregiver’s CornerFor this issue, I am listng many of the FREE

tele-workshops and FREE webinars for family caregivers. These are all sponsored by the Family Caregivers Network. Register by phone 1-866-396-2433 or on-line at www.careringvoice.com.

TELE-WORKSHOPS: all tele-workshops are facilitated by Allison Reeves1. The Value of Acceptance: Managing the Changes Associated with Caregiving

Family caregiving comes along with many changes for everyone involved. Family caregivers can burn out and quickly become overwhelmed trying to maintain things as they were rather than recognizing the reality of how the situation is now. In this tele-workshop we will explore the importance of acceptance and living in the “now” and focusing on how this can help to alleviate some of the stress of caregiving.

Tuesday, Oct. 16, 2012 6:30 – 8:00 pm

2. Family Caregiving: Sprint or Marathon? Each caregiving situation is unique to the

people and circumstances involved. Pacing yourself appropriately is essential so you can “go the distance”, whatever that may turn out to be. Learn how to distinguish what skills are needed when and how to maintain your resilience throughout your journey.

Wednesday, Nov. 7, 2012 10:00 – 11:00 am

3. Being a Mind Reader Can Be Exhausting Often family caregivers find themselves thrown

into situations in which they have had no previous experience and don’t have the knowledge or skills needed. Trying to read your care recipient’s mind, making assumptions and second-guessing can be exhausting and overwhelming. The role of the family caregiver is to help support the person needing care in living their life as they want to based on their current circumstances. In this tele-workshop we will focus on how to work together as a team with the person you are caring for. Tuesday, Nov. 20, 2012 6:30 – 8:00 pm

WEBINARS: various facilitators1.Aging-in-Place or Residential Care? From a Family Caregiver’s Perspective

The challenges facing family caregiver’s today are tremendous and none is more difficult than the decision about where care will be provided. Can my family member continue to live at home (either in their own home or mine) or should moving to a care facility be considered? With the increasing pressures of an aging population and limited facility beds the majority of caregiving will be provided at home. Are you prepared? What are your concerns? Have you discussed possible options? If they need to move - what are the options, how does it work, how long does it take and what are the costs involved? And most importantly, how do I broach the subject with them about possibly moving into residential care? This webinar will provide an opportunity to discuss your concerns and answer questions on processes and available supports.

Facilitated by Maureen Grant, Thursday Oct. 4, 2012 6:30 – 8:00 pm

2. Maintaining Balance in Your Life While Caregiving

It is essential for family caregivers to find a way to balance the demands of caring for another and taking care of their own physical, mental and emotional heath. It is hard to predict when caregiving might become part of your life and when the time comes the additional responsibilities often get squeezed into an already busy life packed with the day-to-day responsibilities of children, spouse, work, and daily life. Many caregivers take on this new role without letting go of anything else and end up exhausted and burnt out. In this webinar we will explore the key challenges experienced by family caregivers and identify strategies for supporting yourself, while supporting another.

Facilitated byBarb Small, Thursday, Nov. 1, 2012 Noon - 1:00 pm


What’s New On the Web

A Reminder: We’re Going Greener Thank you to all of you who have gone green! We are moving to having our newsletter available online to reduce the number that we print and send to our members.

We would like to know who of our members would prefer to access our newsletter via our website. By default, we will keep you on our mailing list. However, if you would like to access the Transmitter in the electronic form, please email

your name and address to [email protected] with ‘Green Transmitter’ in the subject line, so we can update our mailing list accordingly.

We will continue to produce the Transmitter as a separate quarterly newsletter. We are hoping that as many of our members as possible will opt for the electronic form of the Transmitter and so enable the VEPC to re-direct this funding to our other services and projects.

Nanaimo Man Uses His Parkinson's To Invent Country Flyer: This article was carried on CTV News here in Victoria and relates how Max Lafontaine, a part-time inventor from Nanaimo, is using his Parkinson's to keep his mind and hands busy. Max has designed the ‘Country Flyer’, a combination walking-riding device that can change from a walker to a riding scooter in seconds. This gives Max much easier and safer mobility both indoors and outdoors. Max, who is 57 years old, was diagnosed with Parkinson’s when he was 46. He has been developing his Country Flyer for years, having created many prototypes while working with a local Nanaimo bike shop. He estimates that he has spent over $20,000 of his own funds so far. However, Max says that he is willing to have his latest prototype picked up by the Michael J. Fox foundation for further production and distribution.

If you would like to see Max in action on his Country Flyer, please go to http://www.youtube.com/watch?v=F7yXzbJQdyU

Caring for BC’s Aging Population: Improving Health Care for All. The Centre for Policy Alternatives has created a very compelling 33-page booklet on this very important topic. You can

read this online or download it and print it at www.policyalternataives.ca/hcc-for-seniors.

Don’t Get Boxed in by Parkinson’s: The Underdog Gym in Toronto now has a boxing therapy program for people with Parkinson’s. The program helps to keep people flexible and responsive to their sparring partner, as well as moving continually. More info is available through the CBC website at http://www.cbc.ca/gsa/?q=Parkionson%27s+and+boxing

American Academy of Neurology (AAN) speaks on Parkinson’s. The 64th Annual Meeting of the AAN produced a very good 4-page article entitled What Causes Parkinson’s? that is available at www.medscape.com/viewarticle/766379. Lots of good background info plus where research is heading.

MDTV: This is an information channel from the University of California devoted to medical articles, available through Youtube. There are hours of really good information available here on many physical, pharmaceutical, and personal aspects of Parkinson’s. Just dial up Youtube and search on ‘MDTV’ or even just ‘Parkinson’s’.


Agency UpdateAs I think about upcoming holidays, especially Thanksgiving, I can’t

help but think how lucky we are here at VEPC. We have an amazing membership that teaches us, informs us, supports us, and, yes, sometimes pushes us. Our volunteers are amazing. We appreciate those who help out once a year at a large event like the Walk in the Park for Parkinson’s, monthly at Parkinson’s groups, as well as people like Christina and Terri who volunteer weekly in the office. We thank our funders and donors. I have just completed a year-end report for the Home Instead Senior Care Foundation which is one of many organizations that support us, and we just completed our third Walk in the Park for Parkinson’s which raised almost $11,000. We are appreciative of our leadership. In the last year, we have added five new members to VEPC’s Board of Directors, all of whom have

amazing gifts to share. We are also grateful for our colleagues. We are a team with creative ideas that support one another. Finally, we are grateful for the broader community – a community learning about Parkinson’s that is, overtime, becoming a more inclusive community.

Inclusive community is my passion, drawn I suppose, from the early challenges of advocating to have my son with a disability included in daycare and school. As I have watched the US Republican and Democratic conventions during this last month, the themes of inclusion – understanding, acceptance, accommodation, change – have not been far from my mind. What kind of society do we want to live in? How far are we willing to open our hearts and minds to people who we consider to act, look, think differently from us? How long will it take before we have the community we want? And what will it look like for people with Parkinson’s and other chronic conditions when we have that community? Access to specialists and high quality medical care? Employers who understand that Parkinson’s can affect people early in their careers? A reasonable income for those unable to work? The understanding of family, friends and others in our lives so that our relationships and sense of belonging become stronger?

This week I opened the newspaper to see an article about looming cuts in provincial spending. These potential cuts worry me, as a non-profit manager and as a person who uses service organizations in the community. So many organizations have struggled to weather the weak economy. I worry that cuts to services hurt us not only in the short-term but in our long-term quest to build inclusive communities. Time will tell.

Today, however, we are grateful. For friends, colleagues and family.

Catriona

Publications Mail Agreement No. 40050532Return Undeliverable Canadian Addresses to:

Victoria Epilepsy & Parkinson’s Centre Society813 Darwin AvenueVICTORIA BC V8X 2X7

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“The Transmitter”Published 4 times yearly

Editor: Lissa ZalaCanadian Mail Publications

Agreement #40050532

DIRECTORS:President - David MedlerVice-President - Lynn PollockTreasurer - Harvey LazarSecretary - Ross YoungFiona BaylissAlanna HolroydNathan LampardCharles MeadowDr. Alex MollRyan PerepelkinAndrew TrinderSherie Welsford STAFF:Executive Director - Catriona Johnson, M.S.Parkinson Program Coordinator - Maureen Matthew, B.S.W.Epilepsy Program Coordinator -

Jennifer MorganParkinson’s Outreach Assistant - Lindsay Beal, M.EdEducation Services Coord.inator - Lissa Zala, M.Ed.Accounts - Della Cronkrite

EDITOR’S NOTE: Our newsletter and education meetings provide a range of information which does not neces-sarily reflect the views of our agency. Please use your discretion and consult your physician.

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Vol. 29 4th Qtr, Oct 2012 2nd Annual Walk in the Park for...

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Transcript of Vol. 29 4th Qtr, Oct 2012 2nd Annual Walk in the Park for...