vol. 29, 1st qtr, january 2012 partnerships and parkinson...

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, 1st Qtr, January 2012

Upcoming Meetings 3

Sinemet Changes in 2010-2011 5

Hallucinations and Parkinson’s 7

Computer Games Help People with Parkinson’s 8

File Your Income Tax - You Might Get Money Back 9

Research Update 10

What I Need to Know About the Flu and Parkinson’s 11

Caregiver’s Corner 12

Agency Update 15

Partnerships and Parkinson’sSaturday, April 12, 2012

In 2012, we will be hosting our bi-annual conference during Parkinson’s Awareness Month. The theme of this conference is Parkinson’s and Partnerships, and will explore how Parkinson’s involves a network of medical practitionerrs, pharmacists, therapy professionals, and caregivers, as well as those working behind the scenes on research and support.

Our program is still in development but we have four confirmed speakers. We are thrilled that Dr. Eric Ahlskog, of the Mayo Clinic in Rochester, and author of “The Parkinson’s Treatment Book: Partnering with Your Doctor to Get the Most from Your Medications” will join us as a keynote speaker.

Our second speaker is Dr. Matthew Farrer, the Canada Excellence Research Chair in Neurogenetics and Translational Neuroscience at UBC, who, as a scientist, is currently cited as having made the greatest impact on the field of Parkinson’s research in the past decade.

Other speakers include Dr. Silke Cresswell, an expert on the Non-Motor Symptoms of Parkinson’, and Allison Reeves, a Victoria-based counsellor on Relationships and Caregiving.

This will be a wonderful conference so please watch for the registration form that will be mailed to you in March.

The Transmitter, Volume 29, 1st Quarter, January 2012

Hi folks. A potpourri of news and ideas for your consideration. PDeNetwork Update: Congratulations to all 50 of you who are signed on to the new PDeNetwork. This PD email group gives you an opportunity to connect with locals. It’s such a

quick and easy way to be reminded that you are not alone. Content includes tips from a physiotherapist with PD on specific exercises to manage daily movement problems. Another person remarked about how treating his sleep apnea helped his PD. A few described how finding the right Sinemet dose eased symptoms. Some compared notes on medication reminder gadgets that they found helpful. Some are using voice activated software to avoid the need to type on their computer. And the list goes on…Anyone new who’s interested, please call me and I’ll send you an invite.

PD Conference April 14, 2012:We are pleased to announce that we will

have guest presenters Eric Ahlskog of the Mayo Clinic and Matthew Farrer, a top researcher in the field of Parkinson’s. Some of you may have read Dr Ahlskog’s very popular book The Parkinson’s Disease Treatment Book. (We have several copies in our library). He is one of the best in his field. We also hope to have a local neurologist presenting on Partnering with your Physician in BC’s Health Care System. And, for the special benefit of family members out there, we have a guest to speak about balancing self care with caring for loved ones with Parkinson’s. So, circle April 14 on your 2012 calendars, folks!

Live-in Care Project:More people are beginning to explore

bringing help into the home as an alternative to moving into a care facility. Some locals have successfully acquired live-in help. There are agencies bringing in skilled nurses from other countries and matching them with locals needing

help. There are many factors to consider, pros & cons, ideal circumstances, pre-requisites and risks to address. Cost of live-in care can be remarkably affordable, which surprises many including myself. Jordan Burness, a social work student, is doing a practicum with our agency to explore all elements of live-in care to create a resource guide for anyone interested. If you have experience with live in care or would like to learn more about it, please give me a call so we can either include you in this project or provide you with information as we compile it.

News about CoEnzyme Q10:Some of you have been using this anti-

oxidant supplement in the hope that it slows the progression of Parkinson’s.

Previous study results indicated potential benefit of 1200mg daily. However, a large phase 3 placebo-controlled trial (called the QE3 study) was discontinued recently. Investigators reported no evident benefit from Coenzyme Q10 for slowing or managing PD symptoms at doses of either 1200mg and 2400mg daily. Matthew Brodsky, MD at OHSU Oregon Parkinson Center (www.ohsu.edu) had this to say. “Given these preliminary results…my recommendation would be to discontinue taking it (CoQ10) if the expectation is that it might slow disease progression.” Other sources suggest that if you feel you benefit from some CoQ10 supplementation, use your own discretion about continuing to take it. You may also wish to ask your physician and pharmacist for their opinions.

New local neurologists:We are looking forward to welcoming some

new neurologists to Victoria. We may not have an update until after this newsletter goes to print, so stay tuned through our e-newsletter and the PDeNetwork!

May 2012 be a year rich with all that you hold dear…and you truly are dear.

Warm Winter Hugs, Maureen


Upcoming Meetings Victoria/West ShoreAll 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:Wednesday, February 8th, 2012, 1:30 - 3:30 pm - Following on our very successful Falls Prevention Awareness Clinic that was held at the VEPC in October, we have invited Karla Gallagher, physiotherapist, to come and talk on balance and movement, covering such topics as gait and posture, turns and freezing, exercise and options, using the right equipment, and keeping your motivation for exercising. To register for this session, please call Lissa or Lindsay at 250-475-6677.

Wednesday, March 7th, 2012, 1:30m- 3:30 pm - LOUD is a therapy program to help with speech wellness that trains the person in clear and deliberate speaking techniques to improve communication. Gail Poole teaches the LOUD program here in Victoria and will provide examples of how this therapy program may be of help to you. To register for this session, please call Lissa or Lindsay at 250-475-6677.

Saturday, April 14, 2012, 9:00 am - 3:30 pm - Partnerships and Parkinson’s conference. Please see front page for a more complete description. A registration form will be sent to our members in March.

Upcoming Information Sessions in the West Shore:The following two sessions will be held at the Clubhouse Upper Room. The Clubhouse is at the Juan de Fuca Recreation Centre in Colwood, between the velodrome and Bear Mountain Arena.Sorry for the change in venue but our regular meeting room is booked for Spring Break events. All sessions are between 1:30 pm and 3:30 pm. After our guest speaker, light refreshments are available during a social time. No registration is required.

Wednesday, January 25, 2012, 1:30-3:30 pm - LOUD is a therapy program to help with speech wellness that trains the person in clear and deliberate speaking techniques to improve communication. Gail Poole teaches the LOUD program here in Victoria and will provide examples of how this therapy program may be of help to you. In the Clubhouse Upper Room.

Wednesday, March 21, 2012, 1:30-3:30 - Bounce Back, Live Life to the Full - Jocelyn de Montmorency will introduce this program of tips on how to overcome depression or anxiety, or whatever may be hold-ing you back, that may arise from stress or other life circumstances. This project is led by the CMHA BC Division and funded by the BC Ministry of Health Services. In the Clubhouse Upper Room.


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! Silver Threads classes are a seated/standing combo on Monday and Thursday, 1:00-2:30 pm.Cedar Hill seated classes are

Tuesday and Thursday, 11:30-12:30 pm. We will happily book Handydart transport for you. Please call Lindsay Beal to discuss your eligibility to register for either program. Classes are $5 for VEPC

members, $6 for non-members.

“It is a proper exercise. I am active but the group exercises ensure a full range of motion and it is a good time.” 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/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 at 250-381-9800, and follow the directions to request

a “Parkinson’s Inreach” appointment.

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

January 3, 2012 - A concern for many people with Parkinson’s is Bowel and Bladder Care. Donna Ross, RN, will offer her very informative session on these topics. She covers areas such as knowing how to avoid potential difficulties and what to do if you experience any problems.

February 7, 2012 - Scamming can cost you or a friend thousands of dollars so come to this session and learn how to recognize a scam and how to avoid being scammed. Rosalind Scott, Executive Director of the Better Business Bureau will present this session.

March 6, 2012 - Bounce Back, Live Life to the Full - Jocelyn de Montmorency will introduce this program of tips on how to overcome depression or anxiety, that may arise from stress or other life circumstances. This project is led by the CMHA BC Division and funded by the BC Min of Health Services.

April 3, 2012 - Your independence may include your ability to drive. Peter Grey from the BCAA Drivers Program will offer a session on some of the current rules and how they affect you, proper driving tech-nique, how you could lose and then re-gain your license, what driving tests for adults comprise, etc.


Sinemet Changes in 2010-2011Making sense of a confusing issue…

Sinemet is a brand name drug. The generic name is Levocarb (L/C). It comes in both Immediate Release (IR) and Controlled Release (CR) formulations.

Two changes have occurred recently:

Change #1: Generic CR L/C 200/50 was discontinued, so once pharmacy shelves were cleared, this product was no longer available. Hence, more people went seeking other Sinemet products such as brand name CR Sinemet 200/50 or switching to two CR L/C 100/25. This led to some supply shortages of these other types of Sinemet.

Change #2: Brand name Sinemet supplier Merck Frost, announced a change in manufacturer for both CR and IR Sinemet in order to “standardize the image of Sinemet worldwide”.

Sinemet tablets have changed colour and CR Sinemet 200/50 is no longer scored for cutting in half. It is generally not recommended that you split these new tablets in half.

The only type of brand name Sinemet not changed is the IR Sinemet 100/25, a yellow tablet. However shortages of other types of Sinemet generated shortages of IR Sinemet 100/25 as well.

Bottom Line…

Avoid waiting until the last minute for drug renewals. If your pharmacy is short-stocked, they will manage your supply as best as possible, or refer you back to your physician if need be.

Check your prescription carefully before you leave your pharmacy to double check for any changes. Ask your pharmacist if you have any questions.

Footnote: We wish to track Sinemet shortages, so if your pharmacy is experiencing any supply problems, we welcome your call.

Warm Regards, Maureen

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:Margaret MacKay, Mrs. Bell, Mrs. Sherwood, Garvin Bruner, Ernest Lindner, and Bronwyn James.


It is estimated that about 50% of people with Par-kinson’s will, at some point, experience hallucina-tions. In a recent study in London, in which inves-tigators used a specially developed screening tool, they found that as many as 75% experienced hal-lucinations. The presence of hallucinations is also sometimes used to differentiate Parkinson’s from other conditions such as atypical parkinsonism.

Hallucinations can affect younger people but are more often associated with those who are older and have had Parkinson’s for some time. It is thought that Parkinson’s itself can be a cause of hallucina-tions, although other doctors argue that they are simply a side effect of certain medications used to treat the disease. But other factors may also be involved:

1. Underlying illness: Hallucinations sometimes occur as a result of other illnesses such as a chest or bladder infection or as a side effect of the medications used to treat them.

2. Medication: Hallucinations can occur as a side effect of many medications, but are particularly associated with the amantadine, dopamine agonists or anticholinergics groups, especially in older people. Sometimes they occur when medications have been adjusted or if a new medication is added. However hallucinations may occur at any time and there may not appear to be any correlation with a change in drug regime.

3. Memory problems: Hallucinations are more common in those who already have some memory problems and are often associated with dementia.

4. Sleep disturbance: Those whose normal sleep/wake pattern is disturbed or who sleep a lot during the day seem to be more prone to hallucinations; some may also experience sleep

talking or sleep walking.5. Eyesight: Visual hallucinations can occasionally

occur because of poor eyesight. People who have lost their sight can still experience visual hallucinations: this is known as Charles Bonnet Syndrome.

Who can help?It is important that you discuss hallucinations with a professional so that all treatment options can be considered. Your first point of contact should be your doctor or, depending on where you live, a Parkinson’s specialist. Your caregiver will also be able to help, although he or she may find the situa-tion distressing, not knowing how to react or what to say.

If you are caring for someone who has hallucina-tions, the following may help:

a) Try to stay calm and let the person hallucinating know that you cannot see, hear or feel what they are, but in such a way as not to upset them or cause an argument

b) Be understanding and explain that, whilst you realise things seem real to them, you cannot see or hear them yourself. This can help to calm and reassure if the hallucinations are distressing

c) It is important to encourage a dialogue with their doctor so that they discuss their perceptions and ways of treating them

d) It can also be helpful to try to distract the person by changing the subject or moving away from the surroundings in which the hallucinations have just occurred.

[Note: Lewy Body Dementia is a sub-type of Parkinsonism in which visual hallucinations can occur without use of PD medications.]

Hallucinations and Parkinson’sSource: From European Parkinson’s Disease Association, Nov. 10, 2011

Found on line at: http://www.rewritetomorrow.eu.com/pdsymptoms/hallucinations


A study carried out by the Primary Care Research Group at the Peninsula College of Medicine and Dentistry, supported by the UK's National Institute for Health Research (NIHR) and NIHR PenCLAH-RC, has analysed the results of an exercise program to prevent falls in those with Parkinson's.

The study was instigated because, to date, there are few trials that have examined the benefit of such interventions to people with Parkinson's.

The research team used a ran-domised controlled trial to track the effectiveness of an exercise programme for people with Parkinson's who had a history of falls and reported a reduction in falls among those that received the intervention.

Despite limitations in the num-ber of people who took part in the study, the research team was able to log significant improve-ments in balance, a decrease in the fear of falling and increased levels of physical recreational activity.

As a result, the findings of the study add to the evidence base for physiotherapy and exercise in the management of people with Parkinson's. Further studies involving a greater number of people with Parkinson's and a longer follow-up period will help to support this case, as well as identify which inter-ventions work the best under which circumstances.

Up to two-thirds of people with Parkinson's expe-rience falls each year: this compares with a third of

the general community-based elderly population who experience falls. When a person with Par-kinson's falls, the impact is widespread affecting patients, families and health and social care organi-sations. Falls and associated injuries are the main cause of hospital admissions among people with Parkinson's, resulting in extended hospital stays which put pressure on both the patient and the

National Health Service.

Dr. Vicki Goodwin, Pen-CLAHRC Senior Research Fellow at the Peninsula Col-lege of Medicine and Dentistry and who conducted this study as part of her PhD funded by a NIHR Researcher Develop-ment Award, commented: "Ours is one of the first stud-ies to seek evidence for the effectiveness of interventions, and as such it is an important step towards understanding the best ways in which to help those with Parkinson's both deal with and prevent further falls. As well as the physical

effects of a fall, people with Parkinson's also suffer psychologically, often reporting a lack of confi-dence across the spectrum of everyday life activi-ties, thus affecting quality of life."

She added: "It is clear that intervention programs to prevent falls in those with Parkinson's do have the potential to work, but more research is needed before we have the knowledge necessary to recom-mend definitive approaches to this growing issue."

Preventing Falls in People With Parkinson’sSource: ScienceDaily (Oct. 12, 2011)


Playing computer-based physical therapy games can help people with Parkinson's improve their gait and balance, according to a new pilot study led by the UCSF School of Nursing and Red Hill Studios, a California serious games developer.

More than half the subjects in the three-month research project showed small improvements in walking speed, balance and stride length. UCSF and Red Hill were the first research team in the United States to receive federal funding in the burgeoning field of low-cost computerized physical therapy games. Unlike off-the-shelf computer games, these specialized games encourage scientifically tested specific physical movements to help people with functional impairments and diseases.

Teams at Red Hill and UCSF collaborated to produce nine "clinically inspired'' games that were designed to improve coordination in people with Parkinson's.The clinical team members at UCSF focused on specific body movements and gestures that their previous research had shown to be beneficial for staving off the physical declines of Parkinson's.

The Red Hill team then designed physical games, similar to Wii and Kinect games, in which subjects win points by moving their bodies in certain ways. Each game has multiple difficulty levels so that the clinical team could customize the therapeutic games for each subject's abilities.

"Each subject found his or her own gaming 'sweet spot' -- the spot where the physical challenge was not too hard, not too easy, just right,'' said Bob Hone, creative director of Red Hill Studios and the lead principal investigator of the study. "And

when subjects mastered one game level, they often moved on to harder levels for more beneficial effect. The subjects improved their games scores while improving their gait and balance.''

Red Hill developed a custom sensor suit with nine tracking sensors to analyze subjects' movements with higher resolution and accuracy than is possible with consumer gaming platforms. The PC-based system sent encrypted data to a secure database allowing the research teams to track the subjects' performance daily.

"From the data tracking we could see that there were some subjects who were playing the games more than the specified three times a week,'' Hone said. "Because this was a highly structured research study, we actually had to ask them to play less than they wanted.''

The trial involved 20 participants in northern California with moderate levels of Parkinson's. After playing the games for 12 weeks, 65 percent of game players demonstrated longer stride length, 55 percent increased gait velocity, and 55 percent reported improved balance confidence.

"These initial studies show the promise of custom-designed physical therapy games promoting specific movements and gestures that can help patients get better,'' Dowling said. "Now that we have this preliminary positive result, we want to conduct a longer term clinical trial with more subjects to confirm these initial findings.''

A video of the therapy games is available at: http://redhillstudios.com/#/projects/games/pdwii

Computer Games Help People With Parkinson's, Pilot Study Shows

Source: ScienceDaily (Oct. 19, 2011)


Did you know that just by filing your income tax return, you could receive more money from the federal and provincial governments through tax credits and benefits? By simply filing your income tax return, a single person may receive approximately $585 more per year, a single parent with one child could receive $4,700 a year, and a two-parent family with two children may receive up to $8,600 per year.

By filing your income tax return, you could receive: 1. GST/HST Credit 2. BC HST Credit 3. BC Low-Income Climate Action Tax Credit

You may also be eligible for other benefits such as: 1. Canada Child Tax Benefit, which includes

the BC Family Bonus and BC Earned Income Benefit

2. National Child Benefit Supplement 3. Universal Child Care Benefit 4. Working Income Tax Benefit

These benefits and credits are generally considered exempt income, which means they are NOT deducted from your assistance cheque and should be declared when you submit your stub. However, your income tax refund is considered earned income and may be deducted.

Resources: There are many resources available to help

you file your income tax return:The Community Volunteer Income Tax

Program assists those unable to complete an income tax return by themselves. The Volunteer Tax Preparation Clinics are generally offered between February and April of each year; however, some tax clinics operate year-round and the service is free.

For a list of the 13 available tax clinics in

Victoria, you can go to: http://www.cra-arc.gc.ca/tx/ndvdls/vlntr/clncs/victoria-bc-eng.html.

If you request service from a private sector tax return specialist to prepare and file your income tax return, you will have to pay for this unless it is an advertised free service. You can contact the Ministry of Social Development to enquire if a private sector specialist is offering their services free. However, if you pay a fee, you will not be reimbursed by the ministry. It will be the your responsibility to pay if you choose this service.

You can ask your family and friends to assist.

How to file your income tax return: There are several ways to file your income tax

return:By mail – you can mail a paper income

tax return to the tax centre using the envelope included in your tax package. Income tax return forms can be downloaded from the Canada Revenue Agency website at http://www.cra-arc.gc.ca/menu-eng.html, from any Canada Post outlet or at an Employment and Income Assistance Office.

By phone – you may be eligible to use TELEFILE, which is a fast and easy service that allows you to file your income tax return by phone.

There is also a simplified electronic service called ‘Service for Seniors’. This allows seniors to file their income tax return TELEFILE service at 1-800-959-1110. For more information on Service for Seniors, go to: http://www.cra-arc.gc.ca/esrvc-srvce/tx/ndvdls/tlfl/snrs-eng.html

By Internet - you may be eligible to use NETFILE if you are completing and sending your own income tax return, for EFILE if you are having your return prepared and sent by an authorized service provider. There are several no-cost tax applications for NETFILE for low-income families.

File Your Income Tax - You Might Get Money Back This is an informational reminder from the BC Ministry of Social Development


Effect of Aging On the BrainSource: ScienceDaily (Oct. 10, 2011)

Research by biologists at the University of York and Hull York Medical School has revealed important new information about the way the brain is affected by age. Working with scientists at the Peninsula College of Medicine and Dentistry in Plymouth, they have studied responses to stress in synapses -- neuronal connections.

The researchers discovered that under stressful conditions, such as neuro-degeneration, resulting high energy forms of damaging oxygen cause synapses to grow excessively, potentially contributing to dysfunction.

Such stresses occur during neurodegenerative disease such as Alzheimer's and Parkinson's.

The research, which was funded by the Medical Research Council and the Biotechnology and Biological Sciences Research Council, is published in the latest issue of the Proceedings of the National Academy of Sciences (PNAS).

Laboratory modelling was carried out using fruit flies (Drosophila), but similar pathways are present in humans. The scientists studied the

responses using a model of lysosomal storage disease, an inherited incurable childhood neurodegeneration where enlarged synapses have been observed, but the role that growth has in disease progression and brain function is not yet clear.

Co-author Dr Sean Sweeney, of the Department of Biology at the University of York, said: "The findings have strong implications for neuronal function as brains age, and will add significantly to our understanding of neurodegenerative disease such as Alzheimer's and Parkinson's disease."

Co-author Dr Iain Robinson, of the Peninsula College of Medicine and Dentistry, added: "Neuronal contacts in the brain are constantly changing. These changes in the brain enable us to form short term memories such as where we parked the car, or longer term memories, such as what is our pin number for the cash point machine. Our work sheds light on how our brain becomes less able to make these changes in neuronal contacts as we age and helps explain the loss of neuronal contacts seen in several neurodegenerative diseases."

Virus destroys Parkinson's symptomsSource: Henry Ford Health System, found in Pacific Northwest Newsletter, Sept 23, 2011

Parkinson's is a progressive disorder of the nervous system that affects movement. It develops gradually, and often starts with a barely noticeable tremor in one hand. While tremors may be the most well-known sign of Parkinson's, the disorder

also commonly causes a slowing or freezing of movement.

According to the Mayo Clinic, there's no cure for Parkinson's, but medications can help control some of the symptoms of Parkinson's, and in some cases, surgery may be helpful.

A small region deep within the brain is the source for the symptoms of Parkinson's. When brain neurons in that region of the brain

Research Update


New Medicines Offer Hope For Those With Parkinson’sSource: Northwest Parkinson’s Foundation Newsletter, Nov. 25, 2011

Each year, approximately 60,000 Americans are diagnosed with Parkinson’s. The incidence increases with age.

While the average age of onset is 61, 40% of those with Parkinson’s are under the age of 60, placing them squarely in the workforce. According to the Parkinson’s Disease Foundation, one-third of employed individuals lose their jobs within a year of a diagnosis. Worldwide, the number of men and women with Parkinson’s is expected to double in the next 25 years.

Signs of the disease can vary widely. The most common physical symptoms include tremor, or shakiness or trembling in the hands, arms, legs, jaw and face; rigidity of the muscles; slowness of movement or difficulty starting to move; and problems with balance and coordination.

Fortunately, biopharmaceutical research companies are currently developing 36 medicines to help those living with Parkinson’s. All the medicines are either in clinical trials or awaiting review by the U.S. Food and Drug Administration. They include:

* Gene therapies that target specific areas in the brain;

* Cell therapy that uses a patient’s own cells to reverse effects of the disease;

* New delivery mechanisms of currently approved treatments, including a transdermal patch and an intranasal formulation;

* Medicines to treat a motor function disorder associated with Parkinson’s treatment.

Researching and developing new medicines remains a risky investment and lengthy process—costing, on average, $1.2 billion and taking 10−15 years to bring a new medicine to patients. But novel therapies make a difference to patients, offering progress in situations where there was previously little hope.

begin to die, the cells can no longer manufacture the molecule dopamine -- a chemical critical for controlling movement.

The exact cause of Parkinson's is unknown, but several factors appear to play a role, including genes. Researchers have found specific genetic mutations that likely play a role in Parkinson's. In addition, scientists suspect that many more changes in genes -- whether inherited or caused by an environmental exposure -- may be responsible for Parkinson's. Exposure to toxins or certain viruses may trigger Parkinson's signs and symptoms.

For the first time, gene therapy has proven successful in Parkinson's patients. The therapy uses a virus that is stripped of its infectious properties and delivered with a thin tube into the brain's

subthalamic nucleus -- a structure "the size of a pine nut" that is involved with movement. Researchers followed 45 patients for six months after the procedure at seven U.S. medical centers. Half the patients showed improvements early, which they still sustained 6 months later.

Most current therapies and research approaches target dopamine to treat motor symptoms associated with Parkinson's. In contrast, the focus of the current gene therapy strategy is on increasing GABA, a brain neurotransmitter that regulates movement.

I n Parkinson's, GABA is reduced in the area of the brain known as the subthalamic nucleus, causing it to be overactive. Investigators feel this might be a better way to help advanced Parkinson's.


The risk of getting the flu increases as the fall months turn into winter. The flu can be serious for some people, especially the very young or elderly, people on immune suppressant medication and people with chronic medical conditions including Parkinson's disease.

The flu can worsen PD motor symptoms and cognitive problems. Fever and decreased fluid intake can lead to dehydration and weight loss. If you have trouble swallowing, you may also find it is more difficult to cough and clear secretions due to nasal congestion and bronchitis. An extended time in bed recovering from the flu can cause additional weakness leading to more fatigue and increasing your risk of falls if you have balance problems.

Although it is not known whether this year's flu will cause the same concerns that came with last year’s 'swine flu', it is clear that the flu is a serious and potentially preventable problem. The flu vaccine is obtained once a year, beginning in the fall. It is available in 2 forms: inhaled nasal spray and muscular injection. The Center for Disease Control (USA) recommends the vaccine for high risk patients especially patients with swallowing problems. Due to the significant health problems associated with the flu, it is recommended that you talk to your doctor to see if the seasonal flu vaccine is for you.

An ounce of prevention There are some simple but very effective steps

you can take to avoid the flu or at least lessen your chances of getting it:

• Wash your hands often to reduce the spread of infection

• Stay home from work or other public outings if you experience flu symptoms

• Cough and sneeze into your elbow, not your hand, to reduce risk of spread

• Drink plenty of fluids, get the rest you need,

and be sure you get the nutrition you need to fight your infection.

Anti-viral medication • Amantadine is a PD medicine, used to

treat motor symptoms and dyskinesia, that was originally used as an anti-influenza medicine to aid recovery from flu symptoms. You should consider getting the flu vaccine even if you are on Amantadine as it will not protect you from the flu.

• Antiviral medicines can help reduce flu severity if started within 2 days of symptom onset. Other antiviral medications to ask your doctor about include Oseltamivir (Tamiflu) and Zanamivir (Relenza).

Other treatments Talk to your doctor or health care provider

about treatments available to relieve the discomfort of fever, pain, and cold-like symptoms. Some cough medicines (dextromethorphan) should not be used if you are taking certain PD medicines such as MAO B inhibitors.

Act now! • Talk to your neurologist or family doctor

about the flu vaccines. • Ask your doctor or pharmacist if cold

preparations are safe to take with PD medications.

Adapted from an article by Monique Giroux, MD, Northwest Parkinson's Foundation Wellness Center, www.nwpf.org.

The full article can be found at http://www.nwpf.org/wellness/PhysicalHealth/GeneralHealth/HealthTipsDetail.aspx?id=21&headerbar=2

This article was found in Parkinson Society British Columbia, Grouplink, December 2011

What Do I Need to Know About the Flu and PD?


Caregiver’s Corner

Care for the CaregiverSource: Northwest Parkinson’s Foundation Newsletter, 11/02/2011

1. Education and AwarenessLearn about Parkinson's. Understanding what is happening and what to expect is half the battle.

2. Know what treatments are available. Ask about the most common side effects and what to do about them.

3. Learn how Parkinson's changes over time. The key is not to get so caught up in the symptoms that you are overwhelmed but to think about ways that you can change how you do things to reduce or delay any problems down the road.

4. Assemble Your Team. Who will you go to in times of stress or for support- Friends, family, counselor, neighbor, clergy, support group members.

5. Your medical team is more than your doctor. Review the specialists that are available to you.

6. Understand how rehabilitation can help and when you should ask for it.

7. Organization: Keeping track of the medical treatments, appointments and results can be

time consuming. Keep items in one place such as a notebook or get a simple 3 ring binder to store your information, questions, medication lists.

8. Support: Knowing you are not alone can be very comforting. Call the VEPC about support groups in your area.

9. Set Boundaries: Do not be afraid to say 'no.' Prioritize what you do. This may mean giving up some things that you did in the past, especially if they are not very important to you. Simplify life now rather than waiting until things get difficult.

10. Plan Ahead: Do not wait until there is a problem to find a solution. At that point, it may be too late and you are more apt to feel a loss of control. Life planning is an important and often neglected topic. What will you do if you can no longer take care of your loved one at home. Who can you call for help? What resources are available to you? .

11. Communicate: Set time aside as a couple to simply talk and listen.

12. Set Aside Time: Caregiving can leave you tired, zapped of energy and with little time. It is important to set aside a moment each day- even if it is just 5 minutes. Have a cup of tea, talk

to a friend, keep a journal.

13. Self-healing: Learn to relax. Simple techniques such as yoga, slow breathing, meditation or guided imagery will help. Surround yourself with the healing powers of nature. Listen to music. Practice mindfulness, be present and live in the moment.

14. Find the positive: Laugh. Even simple things such as watching a comedy can help. Is there something to be grateful for today, in this moment?

15. Be positive.

16. Do not forget your own health. Do not forget about yearly medical physicals and preventative health for yourself. Exercise and eat well.

17. Do not lose what is you: Continue your outside interests, passion or hobbies.

18. Get help: Find respite. Work is not respite. Find a moment you can keep to yourself.

19. Indulge yourself: Chocolate anyone, massage, movie matinee?

Adapted from original article by Monique Giroux, MD Copyright 2011 Northwest Parkinson’s Foundation


Websites of InterestI am always looking on the web for sources of information regarding Parkinson’s. I will continue to provide you with some of the great sites I have found and that I access regularly. If you have a favourite site that you use and would like to share it, please let me know and I will include it here in future newsletters.

The first site is from the BBC Health website, and covers a wide range of topics on aging in general and some specifically mentioning Parkinson’s, such as preventing falls. I found the whole site very informative for many aspects of what to expect as we age (which, for some reason that I cannot understand, they think starts at 55!!). The URL is: http://www.bbc.co.uk/health/support/elderly/

A second website that is chock full of great information is that of our colleague across the

pond, at Parkinson’s BC. Their general website is : http://www.parkinsons.bc.ca . Of particular note is the Help Sheets column, and, at this time of year, you may be interested in their help sheet on Tax Tips, where they list over a dozen tips on how to reduce your taxes or how to apply for benefits. This specific page on their website is: http://www.parkinson.bc.ca/Tax-Tips.

And a third really interesting site is that of the Dana Foundation. This site is http://www.dana.org. This foundation is all about the brain, and about all of the brain. I find the articles very well written and consequently easy to understand. While the focus of this site is not just Parkinson’s, there is a wide variety of contributing authors on a range of topics, e.g. current neurological research beside an article by Deepak Chopra on stress management. ‘Something for everyone’ as they say.

Once again, I am reporting on the extremely busy year that we have just completed. We have had many successes throughout 2011 and I look forward to 2012 with enthusiasm.

I am especially pleased that our West Shore support group is thriving. We meet every two months and have had a variety of speakers and presenters, and we held our 2nd Walk in the Park fundraiser at Coast Collective Art Gallery. We shared our Walk time and space with a fundraiser for The Parky’s Peddlers, complete with silent auction, air castle for the kids and a beer garden. It was a great time all afternoon!

During this past year, in Victoria, we offered 13 education sessions at which 204 people attended. In Sidney, we held 10 Support Group meetings with an average of 19 people attending per meeting, plus 3 medication information sessions for 12 people. And in the West Shore, we held 6 meetings with an average of 11 people

attending per meeting. In total, for education sessions in 2011, we offered our clients 35 sessions with a total of 465 people in attendance at them all.

Also during 2011, I have been enjoying delivering Education In-services to students, care attendants, professionals, and organizations. I delivered 12 of these hour-long presentations to a total of 278 people throughout the CRD.

With 2011 now behind us, I look forward to even more activity on the Education Services front in 2012. One of the main events will be our bi-annual conference which will have as its theme Partnerships with Parkinson’s. This day-long event will take place on Saturday, April 14, 2012. We will be sending out registration information for this conference later in the spring.

Happy New Year to you all!

Lissa Zala

Education Services Summary for 2011


Agency UpdateI read recently that a study led by the School of Health and Medicine at

the University of Lancaster in the UK suggests it may be possible to detect Parkinson's in the early stages, perhaps before physical symptoms emerge, with a simple blood test. Clearly this would be a major step in the area of diagnostic research.

Like genetic testing, however, it raises profound questions for individuals and their families. If you know early perhaps there are steps one can take to delay or ameliorate symptoms – exercise, nutrition, medication. Perhaps knowing that you will have Parkinson’s fills you with energy to take control of your health, research treatments, or plan the life you always wanted. On the flip side, does knowing make you fatalistic,

depressed, inactive?

Of course each person with the condition is different and will answer this question for themselves and in their own way and circumstances. And of course, those living with Parkinson’s today did not receive “advance warning” that their lives would be changed whether they received the news at age 35 or 85.

I am sure that 10 years from now (or less) the VEPC will be serving people with Parkinson’s who know their diagnosis earlier in their lives – and we will all know more about the disease. Perhaps we will be on the verge of a cure.

For the agency, this means our services will have to adapt to changing knowledge and practice in the research and medical communities while we also enhance our support and services for those in the late stages of Parkinson’s. It’s something I think about a lot. How does VEPC evolve to support this community in a changing environment?

We have always listened to our members when creating new programs and services. Often an issue will come up multiple times in consultations, at support group meetings, and now online. When a new issue arises, Maureen, Lindsay and Lissa begin to talk about it and how VEPC can help. Often from that planning comes a new workshop, a new program, an article in the next newsletter. So, please keep talking about the issues affecting your lives. We can only be relevant if we know your concerns.

On a final note: Our last Parkinson’s conference was a tremendous success and our next, scheduled for Saturday, April 14th, 2012, promises to be even better. Mark the date on your calendar and watch for information to come in early March.

Here’s to the future and a Happy New Year!

Catriona Johnson

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“The Transmitter”Published 4 times yearly

Editor: Lissa ZalaCanadian Mail Publications

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DIRECTORS:President - David MedlerVice-President - Christine CoatesTreasurer - Bill MorrowSecretary - Lynn PollockDionne BarnesAlanna HolroydNathan LampardHarvey LazarDr. Alex MollChristopher PittBlaise SalmonRoss Young

STAFF:Executive Director - Catriona Johnson, M.S.Parkinson Program Coordinator - Maureen Matthew, B.S.W.Epilepsy Program Coordinator and Parkinson’s Outreach Coordinator - Lindsay Beal, M.EdEducation Services Coord. - Lissa Zala, M.Ed.Accounts - Della Truitt

EDITOR’S NOTE: 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.

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Confidentiality 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.

vol. 29, 1st qtr, january 2012 partnerships and parkinson...

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