Contact813 Darwin AvenueVictoria BC V8X 2X7Phone: 250-475-6677Fax: 250-475-6619Email: help@vepc.bc.caWeb: www.vepc.bc.ca

Inside...How’s Your Memory? 2

Vol. 27, 4th Qtr, Oct 2010

Upcoming Programs 4

Riding the Waves with Parkinson’s 7

Research Update 8

Caregiver’s Corner 11

Caregivers’ Study atU-Vic 12

Iron Man for Parkinson’s 13

Parkinson’s Pirates 14

SuperWalk 14

Agency Update 15

SuperWalkforParkinson’s2010

Victoria, September 11 Sidney, September 12

Colwood, September 19

Paddi’s Precious Plodders, Sidney

Page 2 The Transmitter, Volume 27, 4th Quarter, October 2010

How’s Your Memory?How many of us would say our memory is fabulous? Not me…my life is

rich with memory cues and sticky notes! So, how do you know if the changes in your memory and thinking are just age-related or should be reviewed with your physician and maybe even treated?

Dementia involves progressive changes in memory, thinking process and behavior to an extent that daily life is affected. Each person with Parkinson’s has their own mix of symptoms, hence mental function varies greatly. Some show no evidence of mental changes. Those with PD experiencing physical slowness, can also be slower to concentrate, take in information and retrieve

it from their memory. Problem-solving areas of the brain may be affected in PD causing difficulty initiating and taking action. If you are experiencing changes in mental function, it’s important to have a frank discussion with your physician as there can be many treatable factors. Memory can be affected by many things including untreated depression, thyroid dysfunction, nutritional deficiencies, medication side effects and more. If you experience visual hallucinations, your physician needs to know as they are sometimes related to Parkinson’s drugs, which may need adjustment, but they may also signify a Lewy Body dementia. The good news is that treatment options are available.

The Alzheimer Drug Treatment Initiative (ADTI) provides funding for medication and has associated research projects which are funded by the BC Ministry of Health. UVic and UBC are running studies to assess the effectiveness of drugs to treat and possibly slow memory loss. If you are on Aricept (donepezil), Reminyl (galantamine) or Exelon (rivastigmine – pill or patch) for your memory, you may qualify to have your medications funded and to participate in the Caregiver or Seniors’ Medication Studies. Deadline to enroll in both studies is December 31, 2010.

Your next step would be to book an appointment with your physician (ask for a double appointment time if seeing your family doctor) to complete a few tests to see if you qualify. To be eligible for the study, your physician does need to attach an Alzheimer label even if the dementia is of a Parkinson’s type. If you qualify and you consent, your doctor will apply to have these drugs covered. You can also ask your doctor to refer you to the ADTI Seniors’ Medication Study. This study tracks treatment outcomes on memory/reasoning over 18 months. A caring member of the UVic study team will contact you and your caregiver to provide you with more information and discuss enrolment. This study includes the person on the memory drug, the family caregiver and physician.

A separate component of the ADTI project is called the Caregiver Study. I am very excited about this one as it honors input of family caregivers who know firsthand about the effects of dementia/memory loss on their loved one and themselves. Researchers are asking caregivers in this study how they determine in their daily life whether the memory drug is working or not. Eligibility criteria is simply to have a loved one in BC who is currently taking or has been on one of the drugs listed above in the past three years. Caregivers need to have at least 4 hours of contact a week with their loved one. This study only involves the caregiver. I highly recommend that interested family caregivers register to attend the presentation we are holding about the Caregiver Study (see page 4 for details). Also, a reminder that we have a very active PD spouses’ group. Just give me a call to learn more.

Further to memory, on page 5, we’re offering you more in-depth information on dementia and mental exercises to keep you fit, so call us to register.

On page 7 check out a brand new workshop series entitled Riding the Waves with Parkinson’s. We’ll focus on inspiration and cultivating optimism! Hugs, Maureen

The Transmitter, Volume 27, 4th Quarter, October 2010 Page 3

Senior Mentoring ProgramThis is a new program developed by the Saanich Silver Threads and funded through the Department of Human Resources and Skills Development Canada. The Senior Mentoring program will help seniors to get the help they need, to remain independent longer and feel more secure in their community.

What Help Do You Need?

Have you ever been given a form to fill out and it seems so complicated that you just can’t deal with it? For example, you need to apply for transportation or housing or something from the government, and you just don’t know where to start. You phone for information and end up on hold for 10 minutes after you have had to press 4 or 5 buttons, and you lose patience.

Or you are told to look up information on the Internet but you have no computer!

Or English is not your first language and you just don’t understand what they are asking for.

What Does this Program Do?

The Senior Mentoring Program has trained volunteers to help seniors to complete forms, find information, and find answers to questions about problems that are concerning them or their loved ones. While the volunteers are not experts, they can help find the necessary sources for the information you need and also help to complete any required forms.

Where and When Is Help Available?

The volunteer mentors can help at seniors’ centres, a convenient location, or if necessary, they can go to your home. When you need help, call the Saanich Silver Threads Centre at 250-382-3151 and ask to be referred to a senior mentor. The people at the Centre will take all the necessary information and have a senior mentor be in touch with you as soon as possible. There are volunteers through all of the communities in Greater Victoria.

Is There A Charge for the Help?

There is NO charge for this service.

Page 4 The Transmitter, Volume 27, 4th Quarter, October 2010

Upcoming Meetings Victoria/West ShoreAll members of the VEPC are welcome to attend the following workshops and information sessions. Please advise Della (250-475-6677) if you are interested in attending any of these sessions.

WEST SHOREWe are thrilled that there has been so much interest from our members in the West Shore area in the information sessions we have provided so far. We hope that others will hear of us and join us in the future.

This fall, we are delighted that Dr. Viera Saly will present about Parkinson’s and the current medical aspects of treatment for PD. As many of you know, Dr. Saly is a neurologist who has her practice in the West Shore area. This session will take place on Wednesday, November 24th, 2010 from 1:30 – 3:30 pmin the Spruce Room at Centennial Centre, 2805 Carlow Rd. in Langford.

At our next meeting in early 2011, Lynn Pollock will come to speak on Parkinson’s and Medications. Lynn is a well-known pharmacist here in Victoria and she is also a member of the VEPC Board. Lynn is passionate about education and offers these sessions to professionals and clients. The date for this session is yet to be determined but watch this space for details.

VICTORIAIn the Victoria area, we are offering many different programs this fall:

Creative Movement for Healthy Living: We have arranged for Sepora Jacobson to offer a workshop on Creative Movement for Healthy Living. Sepora is a Dance Movement Therapist and she incorporates aspects of stretching, moving, yoga and music in all of her sessions, bringing out the creative energy of dance and movement. This session will be held on Thursday, October 14th at the Victoria Health Unit, 1947 Cook Street, from 1:30 – 3:30 p.m., in the multi-purpose room. Sepora’s session will last about an hour and we will have the opportunity for refreshments and a social time afterwards.

Caregiver Study: The ADTI Caregiver Study is speaking with people who are providing day-to-day support to someone who is taking medication for the treatment of memory loss, including dementia. (Please see page 12 of this newsletter for full details.) An information session will be held on October 20th, 10:30 a.m. at the VEPC on this study which is being conducted by the Center on Aging at the University of Victoria. This information session will be facilitated by Ms. Carren Dujela and is open to all VEPC members who wish to find out more about this study.

Maintaining Your Independence: This series will be of interest to anyone concerned about maintaining their independence in their home for as long as possible. You are welcome to attend any or all of these information sessions. Each session will be held at the Victoria Health Unit, 1947 Cook Street, from 1:30 - 3:30 p.m, in the Multipurpose Room:

1. Thursday, October 21: Home Safety – Presented by Barbara Philips on how to keep your home and personal space safe and comfortable as you respond to the changing needs of Parkinson’s.

The Transmitter, Volume 27, 4th Quarter, October 2010 Page 5

2. Thursday, November 4: Personal Safety in Your Home – presented by Janine Innes of Philips LifeLine. Using the Tower of Risks assessment tool, Janine offers advice on how to change your behavior to prevent falls and improve balance and stability. She will also talk on how to ensure that your home is not a fortress and on the emergency personal alert devices available through LifeLine.

3. Thursday, November 18: Renovating Your Home: presented by Carl Peterson, an architect with experience in renovating a home for a person with Parkinson’s. Carl will talk on accessibility issues, what is practical to renovate in your home to accommodate PD (e.g., bathrooms, kitchen counters), what is needed and which codes apply to renovations. Based on your changing needs, you may want to consider what you require of your accommodation to meet your needs.

Coming in 2011:

Everyone makes a New Year’s resolution to “Get More Exercise” and this is a series that will exercise your brain! We have planned a 2-part series starting next January on Cognition and Your Brain to help chase away the winter blahs. You are welcome to attend either or both of the sessions but we are limiting the number of attendees to 16 at each session. This series will take place at the VEPC Board Room, from 2:00 - 4:00 pm. There is free parking around the building and on Darwin Avenue.

1. Monday, January 17, 2011 – A Healthy Brain, presented by Christin Hillary from local Alzheimer Society. Christin will review ways that all of us, including people with dementia and caregivers can work on brain health.

2. Monday, January 31, 2011 – Mental Aerobics, presented by Sonya Kelly or Roslyn Gillan. A mental health rehab therapist will offer some fabulous exercises to keep your mind in shape!

“Parkinson Disease, from Genetics to Novel Therapeutics” seminar at the University of Victoria

On Friday, November 5 at 2:30 pm, the Department of Biology at the University of Victoria is hosting Dr. Matthew Farrer (UBC) as the William B. Le Grys lecturer. Dr. Farrer will be giving a seminar entitled ‘Parkinson’s Disease, from genetics to novel therapeutics”. While Dr. Farrer will be speaking from a researcher’s perspective, this presentation may be of interest to many in the wider PD community. Dr. Farrer will be speaking in the Medical Sciences Building, Room 160.

Dr. Farrer says, “My work uses many approaches, from clinical neurology, to statistical, computational and molecular genetics, to molecular biology, protein biochemistry and cell biology, to the development of recombinant model systems. We identify genes and mutations involved in neurodegenerative diseases, and we work out what they do. We use this insight and the tools created to develop new methods of intervention designed to halt disease progression, in effect to provide a cure. Our mission is to translate genetic discovery into treatments that will improve the quality of life of patients and families suffering from neurodegenerative diseases.”

Page 6 The Transmitter, Volume 27, 4th Quarter, October 2010

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. No registration is necessary to attend these meetings and we welcome everyone with PD and their caregiver or friends to our meetings. There is a donation box at the door to help cover the cost of renting the Church hall.

Tuesday, October 5, 2010 - “Community Services available on the Peninsula” - presented by Ms. Patricia Berger-North of the Mt. Newton Adult Health Care Centre. Patsy will describe the personal and family support programs that are available on the Saanich Peninsula.

Parkinson’s Exercise Program- A Real Workout!

Exercise has been proven to ease the physical and psychological symptoms of Parkinson’s. VEPC offers two exercise programs for individuals with PD.

For those with balance and other movement challenges, we offer a seated class at Cedar Hill Rec Centre on Tuesdays

and Thursdays from 11:30 am to 12:30 pm. For those who can do a combination of seated with some standing, we offer a class at Silver Threads on Mondays and Thursdays from 1:00 to 2:30 pm.

The cost is $5.00 per class for members and $6.00 for non-members.

Please call Rob Richter, our Exercise Program Coordinator at 250-360-2966 or email him at recreationrobbie@hotmail.com. Rob will determine your eligibility to register or offer you choices of other suitable community exercise programs.

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/hr for family caregivers.

Please call Maureen Matthew at the agency for more information and to discuss your eligibility. Once your eligibility has been determined, you can then contact the college directly (250-381-9800, and push 3 at the prompt) to request a “Parkinson’s Inreach” appointment.

[Editor’s Note: Those of you with extended health insurance may have massage therapy coverage.]

Tuesday, November 2, 2010 - There will be a self-facilitated discussion by the Sidney Support Group on topics of concern.

Tuesday, December 7, 2010 - Our December meeting will help begin the Christmas season with our annual Christmas tea. We will have home-made refreshments, carols, and surprises.

The Transmitter, Volume 27, 4th Quarter, October 2010 Page 7

Riding the Waves with Parkinson’s

What inspires you?What strengths enable you to address challenges in life?

What are the keys to successful coping?What is the art of healthy relationships?

Challenges can prompt us to ask the deeper questions that can lead us to fulfilling new discoveries and renewed purpose. This is an exploratory 3 part series for those of you wishing to be part of interesting & meaningful discussion. Since Parkinson’s impacts the lives of both those with the condition & loved ones, themes of discussion in this program apply to everyone. Maureen Matthew, Parkinson Program Coordinator will facilitate this dialogue with a focus on cultivating optimism & hope.

Program RegistrationWho: • Anyone with some form of Parkinson’s• Loved ones of those with PD are also welcome on their own or together • Able to commit to all 3 sessions• Space is limited to 16 people. We plan to offer this series again, so let us know if you wish to

be included the next time around

When: Mondays November 15, 22 & 29, 2010 from 10 – noon

Where: At agency, Garth Homer Centre 813 Darwin Ave (come early for best parking)

Cost: $30/family for agency members; $40/family for non-members; limited income rate is available

Helping you access this program: If transportation or other factors make attendance difficult, please let us know soon. We may be able to assist you.

How to register: Please call Maureen at 250-475-6677 or email her at mmatthew@vepc.bc.ca

Page 8 The Transmitter, Volume 27, 4th Quarter, October 2010

Research Update Research Targets Protection of Nerve Cells in Parkinson’sTraci Pedersen

PsychCentral - Scientists at John Hopkins have demonstrated on mice that certain drugs protect nerve cells from the deadly effects of Parkinson’s (PD). These findings can be found in the August 22 issue of Nature Medicine.

PD promotes deterioration of the nervous system resulting in tremors and problems with muscle coordination and movement. As of yet, there is no proven protective treatment. Only recently have genetic causes of PD been identified with the potential for being used in developing targeted treatments.

Recently discovered drugs, however, have been found to block the protein LRRK2 (pronounced lark 2), which, when distorted in humans, leads to PD by causing nerve cells to shrivel up and die.

Since overactive LRRK2 is destructive, researchers speculated that by putting a block on LRRK2, they could protect the vulnerable nerve cells this protein attacks. The scientists tested drugs that were commercially available and known to prevent proteins like LRRK2 from acting and adding chemical phosphates to other proteins. Seventy drugs were tested in all, and eight were

found to block LRRK2 from acting.

Out of the eight drugs, two had been previously shown during other studies to be capable of crossing the blood-brain barrier. So the scientists injected these two drugs twice daily into mice engineered to carry Parkinson-causing LRRK2 changes in their brain. After three weeks, the researchers observed the mouse brains to identify if any nerve cells had died. One drug provided almost total protection against nerve cell death. Another drug had approximately 80 percent fewer dead cells than in mock-treated mice. A third drug, which does not inhibit LRRK2, was proven not effective.

“This data suggests that if you were to develop a safe drug, then you could potentially have a new treatment for PD patients with LRRK2 mutations,” says Ted Dawson, M.D., Ph.D., scientific director of the Johns Hopkins Institute for Cell Engineering and professor of neurology and physiology.

The two drugs successful in blocking LRRK2 and preventing nerve cell death in mice with PD were made of similar chemical structures. “One could envision generating compounds around that core structure to develop a relatively selective and potent inhibitor of LRRK2,” Dawson says.

Dawson, in collaboration

with researchers at Southern Methodist University, is designing specific inhibitors of LRRK2 with plans to license the technology. Once the candidate drugs are identified, they will be tested for toxic side effects. It still may be years, however, before the drugs are approved by the FDA for use in humans.

According to Dawson, treatments developed specifically against LRRK2 may even be able to treat other forms of Parkinson’s— those not caused by LRRK2 alterations — as there may be various alterations in different proteins that can lead to Parkinson’s.

“We’re curing PD in a mouse, and now we have to discover drugs that actually work in human neurons. Then we’ll hopefully be able to make the leap forward to get a treatment to work in humans,” Dawson says.

Other authors on the manuscript included Byoung Lee, Joo-Ho Shin, Andrew West, HanSeok Ko, Yun-Il Lee and co-investigator Valina Dawson of Johns Hopkins Medicine; Jackalina VanKampen and Leonard Petrucelli of the Mayo Clinic College of Medicine; Kathleen Maguire-Zeiss and Howard Federoff of the Georgetown University Medical Center; and William Bowers of the University of Rochester Medical Center.

Funding for this research was provided by grants from the

The Transmitter, Volume 27, 4th Quarter, October 2010 Page 9

National Institutes of Health, the Army Medical Research and Material Command, the Mayo Foundation and the Michael J. Fox Foundation.

Source: Northwest Parkinson’s Foundation, Sept. 3, 2010

Calgary microchip ‘talks’ to brain cellsSource: CBC News, August 10, 2010

CBC News - Calgary researchers have created a microchip that “communicates” with brain cells, a discovery that could help patients with Alzheimer’s and Parkinson’s diseases. A team at the University of Calgary, led by Naweed Syed, figured out how to refine a so-called neurochip to communicate with animal brain cells.

“We have never been able to record the subtle activity from brain cells that we have now because this is actually the last frontier,” Syed explained on Tuesday.

The new technology, conducted with the National Research Council and published online this month in the journal, Biomedical Microdevices, improves on a previous chip by Syed’s team in 2004 that used brain cells from snails. The neurochip is able to monitor the electrical and chemical dialogue between brain cells, and to track subtle changes in brain activity. Accessing those areas means researchers could test drugs to treat several neurological conditions accurately and quickly.

Laurine Fillo, who was diagnosed with Parkinson’s disease eight years ago, takes medication to manage her symptoms but has always hoped for a better solution. “I told my husband probably five years ago: ‘Oh, one day they’ll develop a microchip that they can implant in my brain and it’ll control the symptoms and help me manage this disease,’” she said. The Calgary research gives her something to look forward to.

“That’s something you sort of have to live with when you have a chronic illness, that there is no cure for, and no cause. If there’s no hope, then it’s hard to go on on a day-to-day basis.”

In the coming months, the team from the faculty of medicine plans to begin testing drugs using the tiny silicon device, embedded with a network of brain cells surgically removed from patients with epilepsy. Researchers hope a similar chip can one day allow an amputee to control a robotic arm or leg, something only seen currently in movies.

“I can’t be too sure I might see that final bionic hybrid, you know that whole Terminator idea that always gets brought up, but for sure we are going to make a lot of progress,” said researcher Collin Luk.

Lack of Sunshine

Linked to Parkinson’s

A study of elderly people with Parkinson’s or Alzheimer’s found they were more likely to

have insufficient levels of vitamin D than healthy people of the same age. More than half of patients with Parkinson’s show low levels of vitamin D, along with 41 per cent of those with Alzheimer’s disease. Only 36 per cent of healthy elderly people had low vitamin D. It is not clear if a lack of the vitamin contributes to the development or progression of the neurological disease or whether it could be a symptom.

Parkinson’s patients are now being given supplementary vitamin D in either standard doses or large doses to investigate the effect on the progression of the disease. The study was carried out by Emory University School of Medicine in Atlanta, Georgia and is published in the Archives of Neurology. The part of the brain affected by Parkinson’s has a high number of vitamin D receptors which may suggest a mechanism for the connection.

The above was retrieved on October 17th, 2008 from www.nwpf.org.

Editor’s Note: This study is only in an initial stage. Please speak to your physician before starting or increasing your daily Vitamin D supplement.

FAVA Beans Anyone?

Did you know that levodopa does occur in a natural food source - broad beans, also known as fava beans? It was first isolated from vicia faba early in the twentieth century. There are some patients that make

Page 10 The Transmitter, Volume 27, 4th Quarter, October 2010

mixtures or suspensions of the beans, and find that there seem to be some advantages over tablet formulations in treating Parkinson’s. It can certainly be shown that meals of these beans will produce equivalent blood levodopa levels to tablets. The disadvantage of using fava beans as a supplement or replacement of the tablet forms of levodopa is that it is difficult to measure the amount of levodopa one would get from the beans in relation to the amount necessary to treat PD symptoms. Too much of the medication can often be just as harmful as too little. For most patients, the tablets are much more convenient.

Submitted by Dr. Peter Kempster, Associate Professor of Department of Neurosciences, Monash Medical Centre, Clayton, Victoria, Australia.

Antioxidants - Brain Food!

Yes, antioxidants are good for Parkinson’s and many other neurological disorders! The neuronal death that occurs in Parkinson’s, like Alzheimer’s disease, is thought to involve, in part, an over-activation of

oxidative stressors. Essentially, this means that too many free radicals are produced and these unstable molecules react with healthy brain tissue to cause damage. Neurons are especially vulnerable to the toxic effects of free radicals. Antioxidants are molecules that act to neutralize these free radicals, thereby protecting the neurons in the brain. Antioxidants occur normally in the brain and perform such functions, but in the case of people affected by Parkinson’s these may not be sufficient to stop the excessive free radical activity. The antioxidants themselves also may be reduced in people diagnosed with Parkinson’s. This is not to say that this is the only mechanism of neuronal death in PD but it is an important one.

Submitted by Dr. Shawn Hayley, Associate Professor and Director of the Institute of Neuroscience, Carleton University, Ottawa.

Antioxidant Rich Foods

The US Department of Agriculture released a study in 2004 which list the top 20 food which contained antioxidants. These are the results, in reverse

order: 20. Gala apples19. Plums18. Black beans (dried) 17. Russet potatoes (cooked) 16. Black plums15. Sweet cherries 14. Pecans13. Granny Smith apples12. Red delicious apples11. Strawberries 10. Raspberries 9. Prunes8. Blackberries7. Artichokes (cooked) 6. Cranberries 5. Blueberries (cultivated) 4. Pinto beans3. Red kidney beans 2. Blueberries (wild)

And the number one antioxidant-rich food:

1. Small red beans (dried) The small red bean looks

like a kidney bean - same colour and shape - except that it’s (you guessed it) smaller. It’s sometimes identified as a Mexican red bean, but it’s grown in Washington, Idaho, and Alberta, Canada.

The above article is an excerpt from the US Department of Agriculture, 2004.

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:Fred Smith, Brenda Davies, Elizabeth Liesch, Helen Ramsay, Colin Kirk, Ted MacKenzie, Eric Roemer, Lawrence Thompson, Dermot Bradley, Nicholas Cohen

The Transmitter, Volume 27, 4th Quarter, October 2010 Page 11

Caregiver’s CornerIn searching for articles for the Transmitter, I come across many, many really interesting pieces that I would like to include. Unfortunately, there is only so much space available, so in this newsletter I am presenting three short articles on three different aspects of caring for the caregiver: heart, mind, and soul.

Happiness on the upswing:

Source: University of California, Berkley Wellness Letter, Volume 26, Issue 12, September, 2010

Someone forgot to tell seniors that getting old stinks. After all, aging, with its undeniable physical declines and looming sense of mortality, has got to be depressing. Right? Not so, according to a recent study in the Proceedings of the National Academy of Sciences, based on a survey of more than 340,000 Americans. Researchers discovered that, in most people, a sense of personal well-being actually increases after age 50, regardless of gender or life circumstances. What’s more, the study found that feelings of stress, sorrow, and anger, after increasing until about age 50, tend to decrease in later decades.

This goes along with previous research that found “ a U-shaped curve” of happiness – with the youngest and oldest people being happiest – in virtually every country. No one knows for sure

why people become increasingly happier after midlife. Perhaps all that accumulated wisdom, an acceptance of life and its uncertainties, and even changes in brain chemistry may play a role. Whatever the reason, it’s hopeful and reassuring to know that the aging process can bring joy and satisfaction.

Wellness Facts:

Source: University of California, Berkeley Wellness Letter, Volume 26, Issue 9 June 2010

Exercise can lessen the anxiety that often accompanies chronic illnesses, according to a recent review in the Archives of Internal Medicine. The researchers looked at 40 clinical trials involving 2,900 people with a range of conditions, from heart disease and cancer to multiple sclerosis and chronic pain. On average, people who started exercising regularly had a nearly 30% reduction in anxiety symptoms. Workouts lasting more than 30 minutes were more effective than shorter ones.

Having good friends appears to ‘boost’ survival:

Source: Michelle Roberts Health reporter, BBC News, July27, 2010

There are many ways in which friends can boost health and wellbeing. Having a good network of friends and

neighbours boosts survival chances by 50%, US researchers believe. The Brigham Young University team came to this figure by number-crunching data from nearly 150 studies looking at survival odds and social networks.

And they calculate that having few friends is as damaging to survival as smoking 15 cigarettes a day or being alcoholic, PLoS Medicine reports. They believe caring about others makes us take better care of ourselves. But they warn that in today’s modern world social networks are deteriorating as we struggle to juggle careers and families and find a happy work-life balance.

“Relationships sustain us and help our mental health and wellbeing,” said Christine Northam, a Relate counsellor. Losing this social support, they say, cuts survival odds far more than being obese or not exercising.

Lead researcher Julianne Holt-Lundstad says there are many ways in which friends, colleagues and family can boost health and wellbeing. “When someone is connected to a group and feels responsibility for other people, that sense of purpose and meaning translates to taking better care of themselves and taking fewer risks.”

Page 12 The Transmitter, Volume 27, 4th Quarter, October 2010

In their study, which looked at over 300,000 people from four continents over a period of seven years, those with the strongest social networks fared best in terms of health outcomes and lifespan. They were nearly twice (1.5 times) as likely to be alive at any given age than those who were lonely. The study included people of all ages and backgrounds, yet the findings remained the same and regardless of initial health status.

Co-researcher Timothy Smith said: “The effect is not isolated to older adults. Relationships provide a level of protection across all ages.” But he warned that modern conveniences and technology can lead some people to think that face-to-face social networks are not necessary. “We take relationships for granted as humans - we’re like fish that don’t notice the water. That constant interaction is not only beneficial psychologically but directly to our physical health.”

Christine Northam, a counsellor for Relate, said friendship was essential to human survival. “We are designed to live and work in groups. It starts in childhood with our family, then school widens our social network. Relationships sustain us and help our mental health and wellbeing. Isolation, on the other hand, is linked with mental illness, anxiety and ill health.”

Michelle Mitchell of Age UK said illness could be a barrier to maintaining social networks.

Caregiver Study being conducted by the Centre on Aging, University of Victoria

Information for Caregivers and Family Members

The ADTI Caregiver Study

“It’s well known that social relationships are extremely important to older people’s wellbeing, yet sadly one-in-10 over-65s say they always or often feel lonely. Many people in later life struggle to maintain social networks due to mobility difficulties, access to transport or following the death of a spouse. The isolation and loneliness many face can also lead to symptoms of depression, affecting one-in-four older people.”

She said Age Concerns across the country offer older people a place to socialise and meet new people. “We run a range of activities such as lunch clubs, computer courses and exercise classes, as well as one-to-one befriending schemes for people who need extra support.”

Professor Sally Macintyre, director of the Medical Research Council’s Social and Public Health Sciences Unit, said: “Policymakers and health care staff should note this important finding, and we need to build on it to find out how we can use social relationships to reduce the risk of death.”

is speaking with people who are providing day-to-day support to a family member, or someone close, who is taking medication for the treatment of memory loss, including dementia.

The medications in questions are donepezil (Aricept®), galantamine (Reminyl®) and rivatigmine (Exelon®). The study is funded by the BC Ministry of Health Services and conducted by researchers at the Centre on Aging, University of Victoria.

Why is the study being done?

Very little research to date has asked caregivers for their opinions and experiences with these medications. Since most people with dementia have a much closer relationship with their caregivers than with their doctors, it is important to speak with family members to get a bigger picture of how medications are affecting quality of life on a daily basis.

In addition, providing care to someone with dementia can be a significant experience filled with many challenges and rewards. With this in mind, the study hopes to gain an understanding of how these medications may be affecting the lives of those people who are providing care and support.

The insights gained will be presented to the BC Ministry of Health Services’ policy makers at the end of the study. This gives caregivers an opportunity to influence future decisions regarding the continued funding

The Transmitter, Volume 27, 4th Quarter, October 2010 Page 13

Angela Gibbs’ son, Andrew, in Iron-Man for Parkinson’sAngela Gibbs is a member who lives in Brentwood Bay. Her eldest son, Andrew, who lives in Ottawa fulfilled a dream this past summer by competing in the Iron Man competition in Lake Placid. The Iron Man race consists of three legs: 3.8 km swim, 180 km bike, and a 42.2 km run. The whole thing must be completed in 17 hours. Andrew has been training for this event for three years and dreaming about it for 15! His final time was just over 11 hours.

During his training, Andrew surveyed his friends and relations and received not only personal support for this lifetime achievement, but also financial support by raising funds for Parkinson’s in honour of his Mom. He raised a total of $3,500! We send congratulations and thanks to Andrew and to all of his supporters.

The accompanying photo shows Angela and Andrew in Ottawa this past spring, while Andrew was still in training.

of these medications in the province of British Columbia. Results will also be shared with the larger academic and medical community in order to increase the understanding of how these medications impact caregivers’ roles.

You may be suitable for the study if:• You are caring for a family

member, or someone close, who is living with memory loss or dementia;

• They are taking, or have taken, one of the following cholinesterase inhibitors: donepezil (Aricept®), galantamine (Reminyl®) and rivatigmine (Exelon®) in the past 3 years; and

• You have frequent in-person contact with them such that

you would notice changes in their memory, behavior and/or daily activities.

What is involved in participat-ing in the study?

The Caregiver Study begins with a short telephone interview to determine your suitability for the study. After the telephone interview, you may be selected to participate in 2 in-person interviews over the course of one year. The interviews last about 1-1/2 hours, and go into detail about your family member’s medication, any effects you notice, and the impacts they have on your own life as a caregiver. For your comfort and convenience, our interviewer can either come to your home or meet you at a location of your

choosing in your community.Your participation is

entirely voluntary and you may drop out of the study at any time without an explanation. Your decision to participate, drop out or decline will in no way affect access to medical services or medication coverage for you or your family member.

The Coordinator for this project, Ms. Carren Dujela, has offered to provide an information session to VEPC members on how to be involved in this project. This information session will be held on Wednesday, Oct. 20th at 10:30 am, in the meeting room here at the VEPC office. If you are interested in attending this information session, please register with Della at 250-475-6677.

Page 14 The Transmitter, Volume 27, 4th Quarter, October 2010

Parkinson’s PiratesThis past July 1st, our Board President, Mike

Doman, and our Treasurer, Bill Morrow, convinced their respective sons and grandson, Stephen and Nicholas Doman and Jeff Morrow, to participate on behalf of the VEPC in the Sidney Days build-a-quick-boat race.

But this is no ordinary boat race. First, the contestants must build the boat from scratch right there on the beach with the following restrictions: they can only use $100 worth of supplies from Slegg Lumber; they only have 4 hours to build the boat and paddles; and they can use only hand-operated tools as there are no power tools allowed. And then the crew of three brave souls must paddle it around a course in Sidney Bay. A real sink or swim situation, in some cases.

The boat design was up to the individual teams – some teams built rafts, some canoes, some dories. With Mike’s blue prints in hand, HMS Sinemet rose on the beach over the afternoon, and, at the sound of the starter’s horn, the three Parkinson’s Pirates took to the water. While some other boats turned ‘turtle’ right off, others made some progress before capsizing. However, HMS Sinemet, with her faithful crew, plowed over the waves to place third overall! The crew of Stephen, Jeff, and Nicholas (holding the trophy) and their supervisors (Mike and Bill) are in the accompanying photo.

The crew donated their trophy to the VEPC and we have it on proud display here at the Centre, along with a scale model of HSM Sinemet and her crew. Please be sure to see it on your next visit.

To catch the fun, you can watch the video at http://www.slegglumber.ca/events/buildaquickboat.html .

Jeff Morrow, Stephen Doman, Nicholas Doman, Mike Doman, Bill Morrow

SuperWalk for Parkinson’s Raises Awareness and FundsApproximately 150 people participated and volunteered for the 2010 SuperWalk for Parkinson’s— this year held in Victoria, Sidney and Colwood. Over $26,000 was raised at the three Walks to fund Parkinson’s services and research. The sun shone in Victoria where Acting Mayor Councillor Dean Murdock welcomed the crowd who were then led towards Lochside Trail by bagpiper, David Cronkrite. In Sidney, the pouring rain did not deter a committed group of Peninsula residents from meeting at Tulista Park where Acting Mayor Councillor Kenny Podmore congratulated them on their tenacity. The next week, under sunny skies, a small but lively crowd circled the grounds of Pendray House, now home of the Coast Collective Art Gallery. VEPC would like to thank all those who participated, pledged

and volunteered for SuperWalk this year, especially the following top fundraising teams:

• Il Grande Passo• Paddi’s Precious

Plodders• Cap’n Jack’s Barge• Team Maureen

A special thank you goes to our coffee and food sponsors, Level Ground Trading Co. and Save-On-Foods.

The Transmitter, Volume 27, 4th Quarter, October 2010 Page 15

Agency UpdateEarly in the summer, we were bolstered by the news that the Michael J. Fox Foundation had awarded a Victoria company, MedGenesis, a $2.1 million US grant. The grant will help MedGenesis and

its partner Biovail develop GDNF (glial cell line-derived neurotrophic factor) as a potential therapy for those with Parkinson’s. GDNF is a naturally occurring growth factor capable of promoting the survival of dopamine-producing nerve cells. Dr. Erich Mohr, chairman and CEO of MedGenesis says that the grant from the Fox Foundation will help MedGenesis and Biovail move into the next stages of developing treatment that could improve the quality of life for people with Parkinson’s.

Quality of life — it’s really what it is all about, isn’t it (although The Beatles will tell you that “all you need is love”)? A chronic illness, and in particular a progressive, chronic illness like Parkinson’s, forces a person to constantly re-adapt based on their abilities and challenges. That process of adapting is directly related to quality of life— an ideal that is defined differently by each individual. What is important to you in your life? What assistance, support, technology, equipment and services are in place to ensure that those things that are most important to you are part of your life?

At VEPC, we talk a lot about quality of life and about our role in the lives of people living with Parkinson’s and their families. We try to stay abreast of current research into exercise, medications, and other treatment options. We work to develop educational workshops, conferences and exercise programs that provide

individuals with more tools to manage their health and wellness. We create partnerships with other community organizations to extend new opportunities to our members. Maureen Matthew, our Parkinson’s Program Coordinator, and Lissa Zala, our Education Services Coordinator, have developed a series of new and continuing workshops and services. We hope you will reconnect with us and participate in an exercise class or a workshop on creative movement or home safety.

September was a busy month in which so many of our members participated in SuperWalk for Parkinson’s. As I write, the totals are not all in, but we estimate that the three walks— Victoria, Sidney, and Colwood— raised approximately $26,000 for Parkinson’s services and research. Congratulations to all who walked, pledged or volunteered!

The research funds raised through this year’s SuperWalk will support Parkinson Society Canada’s (PSC) research program, a program governed by a scientific advisory board that includes Dr. Martin McKeown from the Pacific Parkinson’s Research Centre at the University of British Columbia. The research program at PSC is broad and includes psychosocial research— research that looks not at the cause or biomedical aspects of Parkinson’s, but at the individual’s psychological development in and interaction with the social environment. These are important to understanding quality of life issues in persons with Parkinson’s.

Sometimes we at VEPC struggle with regard to the oft-competing issues of research and services, but we remain focused on living well with Parkinson’s.

Catriona Johnson

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

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

IMPORTANT CHANGE OF ADDRESS NOTICE - To reduce agency costs for newsletters returned with incorrect addresses, please keep us informed of any change in your address so that we can ensure you receive the newsletter

“The Transmitter”Published 4 times yearly

Editor: Lissa ZalaCanadian Mail Publications

Agreement #40050532

DIRECTORS:President - Michael DomanVice-President - Mary Clare LegunTreasurer - Bill MorrowSecretary - Tony WadeChristine CoatesAlanna HolroydDavid MedlerDr. Alex MollLynn PollockSusan Ward

STAFF:Executive Director - Catriona Johnson, M.S.Parkinson Program Coordinator - Maureen Matthew, B.S.W.Epilepsy Program Coordinator - Isa Milman, B.S.O.T., M.Sc.Education Services Coord. - Lissa Zala, M.Ed.Offi ce Manager - Della Truitt

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

Newsletter Support provided by:

Advertising GuidelinesAcceptance of advertising does not constitute an endorsement by the Victoria Epilepsy & Parkinson’s Centre of the products or services listed.Distribution: 800 Victoria & Vancouver Island Annual Issues: January, April, July, October

For ad rates, format, deadlines and payment options please contact Della Truitt, VEPC Offi ce Manager, at (250) 475-6677 or email: help@vepc.bc.ca

Confi dentiality GuidelinesWe respect your right to privacy, so please be assured that our agency does not share our membership list with outside individuals or organizations. Occasionally we may ask you to volunteer some information so that we can better understand our clients’ needs and improve our services.