VIEW OINTS

Reminder* A quarterly newsletter for the to Renew Parkinson’s Community of Membership BEFORE DECEMBER 31 4 6 10 14 Dr. Kluger Discusses Managing Out of the Leaving a FALL Cannabis Research and Gut & Bladder Frying Pan and Legacy 2018 Parkinson’s Disease Problems Into the Fire

Viewpoints Fall 2018 Aug8.indd 1 2018-08-08 4:42 PM Parkinson Society British Columbia

Executive Committee OUR MISSION Parkinson Society British Columbia exists Chair ANDREW DAVENPORT to address the personal and social consequences of Past Chair Parkinson’s disease through education, outreach, scientific COLIN MACBEATH research, advocacy and public awareness. Secretary BOB THOMPSON 890 West Pender Street, Suite 600, , BC V6C 1J9 Treasurer CATHERINE HSU Tel 604 662 3240 · Toll Free 1 800 668 3330 · Fax 604 687 1327 [email protected] · www.parkinson.bc.ca Directors MICHELLE BOURBONNAIS Charitable Registration Number 11880 1240 RR0001 JOHN HOUGAN · RICHARD MAYEDE JAMES PATTERSON · CEC PRIMEAU DAVE RICKARDS · ELISABETH Your support is Support Groups SADOWSKI · SHERRI ZELAZNY essential! 100 Mile House, Abbotsford, , Campbell River, Carepartner Online, Medical Advisor PSBC would not exist without the , Chinese Speaking (Burnaby), MARTIN MCKEOWN generosity of its mem­bers, donors Comox Valley, Cranbrook, Duncan/ and volunteers since it receives Staff Cowichan Valley, , , no government support. Kelowna Caregivers, Kootenay Lake East Chief Executive Officer Shore, Langley, Langley YOPD, Maple JEAN BLAKE The following are some of the Ridge/, Maple Ridge Education & Support Services ways you can support your Caregivers, , Nanaimo Coordinator/Co-Manager society: CAROLINE WIGGINS Caregivers, Nelson, New Diagnosis 1 & Education and Support Services Membership —$25 annual fee 2 (Vancouver), , North Coordinator/Co-Manager & Counsellor Shore Caregivers, Osoyoos/Oliver, MYRIAME LÉPINE LYONS Monthly, Quarterly or Annual Parksville/Qualicum, Parksville/Qualicum Education & Support Services Donation Caregivers, , , Coordinator Powell River, Prince George, Quadra AMY MA United Way—Remember PSBC Island, Quesnel, Richmond, Richmond when giving through United Way Registered Clinical Counsellor Carepartner, Shuswap/Salmon Arm, (part-time) Special Events—Your Sunshine Coast, Terrace, Trail/Castlegar, COURTNEY DOHERTY participation in our special events Tri Cities, Tri Cities Caregivers, Information & Programs Manager makes a difference Tsawwassen, Vancouver Arbutus, (maternity leave) Vancouver Caregivers, Vancouver STACEY DAWES Planned Giving and Downtown Working Professionals, Marketing, Communications Bequests—Consider PSBC as a Vancouver West Side, Vernon, White & Events Manager beneficiary in your Will Rock, White Rock Caregivers, YOPD ALICIA WROBEL Online Marketing & Communications Coordinator Editorial Statement JOVANA VRANIC The views and opinions expressed within the pages of Viewpoints are not necessarily those Resource Development Officer of Parkinson Society British Columbia. The intention is to provide the reader with a wide range BETTY HUM of material. Parkinson Society British Columbia welcomes submissions for the newsletter. The Resource Development VIEWPOINTS editor reserves the right to edit material and to withhold material from publication. & Volunteer Coordinator Articles contained in Viewpoints are for information only. PSBC does not guarantee nor MIRELA PRIME endorse any product or claim made by an author. In matters of medical treatment or therapy, Donor & Member Services patients should consult their physicians. Coordinator/Office Manager SUSAN ATKINSON

2 FALL 2018

Viewpoints Fall 2018 Aug8.indd 2 2018-08-08 4:42 PM

research

RESEARCH GRANT Imaging Synaptic Pruning  PROJECT GRANT in Parkinsonisms $45,000 over 1 year partially funded ($14,500) by Parkinson Although Parkinson’s disease is the broad diagnosis Society British Columbia through for symptoms that range from tremors to stiffness the Parkinson Research to problems with gait and cognition, researchers Program increasingly believe the term may be being applied to a variety of related, but different, neurological RESEARCH PROFILE INSTITUTE conditions. Antonio Strafella, University of Toronto and Professor University Health Network At the Toronto Western Hospital, Dr. Antonio Strafella, a neurologist and researcher, is using sophisticated Strafella hopes this new tool will become a non- imagery technology to develop a new way of diagnosing invasive way to diagnose Parkinson’s. He also and potentially differentiating between those different believes it may enable researchers to distinguish types of Parkinson’s. between different types of Parkinson’s disease, such as Progressive Supranuclear Palsy and Multiple Strafella is using a new tracer – a radioactive substance System Atrophy. injected into the bloodstream. The tracer will bind to a protein in the brain, allowing it to become visible on Equally importantly, the imaging may allow PET (Positron Emission Tomography) imaging scans. doctors and researchers to assess the Those scans will enable researchers to measure the progress of medication or treatment. density of the synapses, or connections, between brain cells. If a drug was working to halt Parkinson’s progression, for example, there should be little change in the Over time, the density of the synapses declines in density of the synapses seen on the PET scan, people with Parkinson’s, indicating the loss of critical, rather than a reduction in their density if the drug dopamine-producing brain cells. Lack of dopamine is was not working. the key driver of Parkinson’s. Strafella’s research as a movement disorders “Until now, there was not a way to measure specialist is always directed at ways to improve the this directly while people were alive, only at an quality of life of the patients he treats. Giving people autopsy after they passed away,” Strafella says. with Parkinson’s more answers about the type of “Now we can quantify… when the disease is at disease they have and how it might progress is one the beginning, the middle stage, and after, so we way of doing that. can measure the progression of this disease.” “By improving the quality of life of the patients, you also indirectly affect the quality of life of the family – the caregivers,” he says.

To learn more about other research projects supported by Parkinson Society British Columbia, visit www.parkinson.bc.ca/research.

Reproduced with permission from Parkinson Canada. VIEWPOINTS

parkinson.bc.ca 3

Viewpoints Fall 2018 Aug8.indd 3 2018-08-08 4:42 PM ­ 2018-08-08 4:42 PM

continued on next page… arkinson’s disease? How does cannabis affect the How does cannabis affect the nervous system? Do cannabinoids improve motor   symptoms in P What are cannabinoids?  

In animal models, the published studies are mixed regarding motor improvements. There have been a There is a lot of hype around cannabis for Parkinson’s for Parkinson’s There is a lot of hype around cannabis directly it is known that if you disease; however, you actually stimulate cannabinoid receptors, a result, As dopamine. of production the decrease cannabis-based it is unlikely that cannabis and other medications treatments are going to replace there are over a hundred However, for Parkinson’s. cannabis, in (chemicals) cannabinoids different some of which stimulate cannabinoid receptors independently work or them that block others and of these receptors. How they are going to act also depends on the state of the nervous system. The bottom line is that there is more research needed to in the context how best to utilize them understand of Parkinson’s. Cannabinoids, as the name would suggest, areCannabinoids, as be derived from a cannabis plant.chemicals that can arewhich receptors, cannabinoid on act They in the nervous system andspecialized receptors cannabinoidsimmune system. The two most common are overthere CBD. Now, and about are THC talk we that have beena hundred psychoactive cannabinoids you can imagine,extracted from the cannabis plant. As to try toit is becoming more and more complicated are, sinceunderstand what the effects of cannabis cannabis plant.there are so many chemicals in a cannabinol (THC). to have more Cannabidiol (CBD) than Tetrahydro (CBD) to have more Cannabidiol

Dr. Benzi Kluger, MD, MS, Benzi Kluger, Dr. of is an Associate Professor as Neurology and Psychiatry, well as the Chief and Founder Care Section of the Palliative at the University of Colorado. His research focuses on the expert ask an ask What is cannabis?

Cannabis is the overarching genus of plants that includes sativa, indica and ruderalis. Sativa is a type of cannabis that has higher levels of THC, so people sometimes conflate sativa with THC, but it also tend ruderalis and Indica chemicals. other contains It is important to note that cannabis cannot be considered a viable overall treatment for Parkinson’s. Instead, anecdotal evidence suggests it to be helpful in alleviating some symptoms. Each person will react surebe so products, cannabis-based to differently anas cannabis trying before physician a consult to alternative treatment. Dr. Kluger Discusses Kluger Dr. Research andCannabis Disease Parkinson’s non-motor symptoms of Parkinson’s, including non-motor symptoms of Parkinson’s, a Taking fatigue and cognitive dysfunction. Kluger supports palliative care perspective, Dr. illnesses in patients with advanced neurological like non-invasive exploring novel treatment options brain stimulation and alternative medicine. Kluger’s patients have turned to cannabis Many of Dr. followingto help treat their non-motor symptoms 2014. Dependinglegalization in Colorado in January he helpson the symptoms people wish to address, doses andthem find the correct concentrations, products. sources of cannabis and cannabis-based FALL 2018 FALL

VIEWPOINTS 4 Viewpoints Fall 2018 Aug8.indd 4 Cannabis Legalization in Canada Medical marijuana is currently legal in Canada, but remains largely unregulated. Recreational cannabis legalization is slated for October 17, 2018. Once legalized, cannabis products will number of studies showing slowed movement in undergo more rigorous testing and labelling to animals, and some that show faster movement. This ensure that concentrations of THC and CBD is because the effect will depend on the type and are more precise. dose of cannabinoid used. In British Columbia, cannabis will be legal to purchase from regulated dispensaries by anyone I published a study in Colorado looking at people with of legal age. Adults will be allowed to possess up Parkinson’s. Only 5% of people in our clinic reported to 30 grams in a public space, but smoking will using cannabis and of those, most reported that they be prohibited everywhere tobacco is prohibited, found benefits mostly for non-motor symptoms. These in addition to playgrounds, recreational areas and would include things like sleep, anxiety, pain, nausea other places where children commonly gather. and appetite. The benefits for motor symptoms were To learn more about the Cannabis Control much more variable. That being said, I have a few and Licensing Act, visit www2.gov.bc.ca. To learn patients who are using cannabis and they feel like it more about federal legalization, visit Canada.ca. helps smooth out some of their offs and ons and motor fluctuations, but that is really a minority of people I see in my practice. CBD may actually improve memory and increase neuronal function and THC may improve memory When people have done other trials with a placebo in older mice, but not younger. If you look at the control group, they have been unable to show that research on people, however, the oldest subject in there is a benefit from cannabis. I would say, however, any cannabis trial was 30 years old. So we have that rather than calling these results negative, they almost no idea what cannabis does in people over 30 were inconclusive. It is possible that they did not find despite the fact that this is now the largest growing the right dose of cannabis or the right mix of population in terms of medical cannabis use. cannabinoid concentrations in the plant. I think there really is more research to be done. There have been some case series which suggest there may be a benefit for REM behaviour disorder We are hoping to do a trial at the University of and for psychotic symptoms like hallucinations, Colorado using high doses of CBD to see if that would delusions and agitation in people with either Lewy help with tremor. I think the dosing is actually very Body dementia or Parkinson’s disease dementia. important. If you compare the doses that we extract Both of those were with CBD. from the randomized control trials to the doses being used in epilepsy, there is a major difference. These What is your advice to people trials use 5–10mg of CBD, compared to 50–100mg interested in using cannabis to treat used for epilepsy. their symptoms? Do cannabinoids improve non-motor When it comes to alternative medicines, there is no symptoms in Parkinson’s? regulation on products. One thing I advise people is to

find a dispensary that they know and trust, and to There has been some interesting animal research regarding memory and cannabis. It was shown that continued on page 11… VIEWPOINTS

parkinson.bc.ca 5

Viewpoints Fall 2018 Aug8.indd 5 2018-08-08 4:42 PM

living well

Managing Gut & Bladder PD symptoms, including dehydration, lack of exercise, poor diet and stress. In order to alleviate constipation, Problems it is important to treat these symptoms first. Some of the most common non-motor symptoms of Constipation can most effectively be managed by Parkinson’s are issues with digestion and elimination. adopting a high-fibre diet, along with maintaining Constipation is experienced by at least half of all adequate fluid intake and exercise levels. Fibre helps people with Parkinson’s, sometimes decades before to bulk and soften stool, making it easier to pass. the onset of motor symptoms, or later as a side effect Health Canada recommends eating 25–38 grams of to drugs like levodopa. Additionally, about one third fibre daily, but reports that most Canadians eat only of people with Parkinson’s will develop incontinence. half that much (Health Canada, 2012). This is likely Although these issues are often considered mere due to the favouring of quick, easy food products nuisances, they can cause significant pain, discomfort packed with sugar and fats. Adding more fibre to your and complications if left unmanaged. diet can be as simple as using alternatives to some The best way to treat elimination issues is by of these everyday foods, including: maintaining healthy everyday habits. As with any • whole wheat and bran to replace refined grains in other symptoms of Parkinson’s, digestion and breads and crackers continence issues may not be experienced by • brown rice or quinoa to replace white rice everyone and can differ greatly between individuals. • whole grain pastas to replace white pasta Regardless of whether or not you have encountered • oatmeal to replace sugary cereals these issues, it is important to recognize warning signs and be prepared to treat any new symptoms Along with these grain products, you should increase accordingly. Below is a guide to some of the simple your intake of legumes, nuts, seeds and fruits and lifestyle changes you can adopt to prevent and treat vegetables with skin. Some more fibre-rich foods you constipation and incontinence. can add to your grocery list include: apples, avocados, bananas, berries, broccoli, cauliflower, corn, oranges, Constipation pears, peas, potatoes, raisins and spinach. Keep in mind the rule that the darker and richer the colour, A healthy gut can pass stool anywhere from three the higher in fibre the food. times per day to three times per week, while each meal can take anywhere from 12–72 hours to digest. Dietary fibre should be increased slowly to reduce Constipation is diagnosed when fewer than three bloating, cramping and gas. Exercise can help lessen bowel movements occur weekly, at which point stool these side effects and promote bowel movements. remains in the intestines long enough that it becomes An adequate fluid intake is also important to ensure too dry and lumpy to pass comfortably. Other signs of proper digestion of fibre and regularity. People with constipation include sensations of rectal obstruction Parkinson’s should look to drink six to eight 250mL and fullness, or incomplete passing of stool during glasses of water daily. To help with constipation, warm bowel movements (GI Society, 2017). liquids like herbal teas can help with bowel movements, VIEWPOINTS especially in the morning (Dolhun, 2017). However, Bowel pattern changes occur in people with Parkinson’s caffeinated beverages, alcohol and hot liquids can as a result of improper nerve functioning in the gut, lead to dehydration and should be limited. which can slow the passing of stool. These issues can also worsen due to the presence of other common continued on next page…

6 FALL 2018

Viewpoints Fall 2018 Aug8.indd 6 2018-08-08 4:42 PM Viewpoints Fall2018 Aug8.indd 7 elimination patternsand schedule. but healthyeatingcan help regulatethebody’s No dietcanguarantee a cureforincontinence, chocolate, honeyandspicy foods(NAFC,2017). dairy products,citrusjuices,carbonatedbeverages, (even decaffeinated),alcohol,artificialsweeteners, intake ofbladderirritantssuchas:caffeine,coffee managed bydrinkingenoughwaterwhiledecreasing lead todehydration.Instead,incontinenceisbest symptoms, but this is counterproductive as it can decrease theirfluidintakeinordertocontrol Many peoplewithincontinencemaylookto Australia, 2014). help continencesignificantly (Continence Foundation doses. Taking medicationontimeeverycan times ofdaywhenmedicationwearsoffbetween the worst of their incontinence symptoms during the body’s dopaminelevels,somanypeopleexperience incontinence. Controlofthebladderislinkedto to constipation, they are also known to help with Though manyParkinson’s medicationscan lead completely emptythebladder. frequency of urination, leakages and the inability to Other incontinenceproblemsincludeincreased injury in navigating trips to therestroomin the dark. only disruptssleep,butincreasesriskoffallsand reported bypeoplewithParkinson’s. Nocturianot among themostcommonnon-motorsymptoms nighttime hyperactivity, referredtoasNocturia,is urgency commonlyoccurringduringthenight.This incontinence, which can cause sensations of Many people with Parkinson’s will develop Incontinence (Parkinson’s DiseaseClinicandResearchCenter). of thecolon,whichonlyservestoworsenconstipation doctor’s supervision,asthesemaydamagethelining aids forconstipation.Donotturntolaxativeswithout speak toyourdoctoraboutfibresupplementsand If problemspersistbeyondthesedietarychanges, bladder-dysfunction.pdf https://www.parkinson.bc.ca/media/72340/ Bladder Dysfunctionhelpsheet: bowel-management-program.pdf  https://www.parkinson.bc.ca/media/31455/ Bowel ManagementProgramhelpsheet: bladder andbowelconditions: For more resourcesonidentifyingandtreating further treatments. problems, consultaphysicianbeforeattempting changes arenotenoughtohelpyourbowelorbladder effect onbothconditions.Ifthesesmaller, everyday urge” topassstool or urinatecanhave a profound such asdrinkingenoughwaterand“honouringthe same time,butthemaintenanceofhealthyhabits Constipation andincontinencecanoftenoccuratthe pages/parkinsons-disease.html Disease. Retrievedfromhttps://www.continence.org.au/ Continence Foundation ofAustralia.Parkinson’s bladderirritants/ Bladder Irritants.Retrievedfromhttps://www.nafc.org/ National AssociationforContinence(NAFC).(2017). and-dietary-needs pdcenter.neurology.ucsf.edu/patients-guide/constipation- Constipation andDietaryNeeds.Retrievedfromhttp:// Parkinson’s DiseaseClinic andResearchCenter. and-parkinson foundation/news-detail.php?ask-the-md-constipation- Parkinson’s. Retrievedfromhttps://www.michaeljfox.org/ Dolhun, Rachel.(2017).AsktheMD:Constipationand Retrieved fromhttp://bit.ly/2IRInwV Nutrient RequirementsThroughFoodIntakeAlone? Health Canada.(2012).DoCanadianAdultsMeetTheir constipation/ badgut.org/information-centre/a-z-digestive-topics/ Constipation Overview.Retrievedfromhttps://www. Canadian SocietyofGastrointestinalResearch.(2017). Sources: 

parkinson.bc.ca

2018-08-08 4:42 PM

7 VIEWPOINTS living well

Making the Most Out of Your something is wrong, or that your treatment is not working. In some cases, it can be difficult to pinpoint Doctor’s Appointments specific symptoms and you may simply be feeling unlike yourself. Rather than taking guesses as to what may be causing you to feel unwell, bring your concerns to a healthcare professional who can help you identify new symptoms and conditions.

Along with physical symptoms, issues to note about your mental wellbeing include changes in your sleep pattern, excessive sleepiness, vivid dreams, sadness/depression, apathy, anxiety, euphoria and loss of motivation or pleasure from activities. Also, be candid about any instances in which you may have experienced hearing things that were not there or believing that certain things were happening that other people say were not. When living with a chronic condition like Parkinson’s disease (PD), it is important to keep track of the 2. Track your physical symptoms, both motor and symptoms you encounter as well as any changes non-motor. in your lifestyle and mood. The information that you When discussing your symptoms, note when new provide to your healthcare team serves as the basis symptoms appear and when old ones are no longer for recommendations they may give you. present. There are four key points to cover whenever you talk to your healthcare team about any new Many of your medical appointments will be short, so concerns: it is important to practice effective communication and build a strong relationship with your healthcare a. Where on your body do you have the problem? team. Parkinson Society British Columbia has b. What does it feel like? Is it constant or resources available to help you make the most of fluctuating? your care by being prepared for every doctor’s visit. To c. How long has it been going on? Has it changed guide your conversations with healthcare providers, over time? or help with self-management, you can download our new Comprehensive Care Plan Checklist at d. How intense, uncomfortable or inconvenient is it? http://bit.ly/PDCarePlan. Be as specific and detailed as you can with this information, and consider using the Comprehensive Changes & concerns to reflect on when Care Plan Checklist as a guide in these discussions. preparing for an appointment Covering these four points can help your healthcare 1. Note your general health and wellbeing, as team identify whether your new issues may be linked VIEWPOINTS well as recent stress levels and mood. to pre-existing symptoms, your medication schedule or your lifestyle and everyday habits. Always trust your gut when discussing your overall wellbeing with healthcare professionals. Elevated stress levels can be a significant indicator that continued on next page…

8 FALL 2018

Viewpoints Fall 2018 Aug8.indd 8 2018-08-08 4:42 PM Viewpoints Fall2018 Aug8.indd 9 that the treatment plan given to you is your only particular treatmentormedication. Donotassume your concerns,fearsand hesitationsaboutany cating with healthcare professionals is to express Another crucialbutoftenmissedstepincommuni­ “Could yourefermetoaspecialist?” details ifneeded,ortomakerequestssuchas have beengiven.Donothesitatetoaskforfurther confirm yourunderstandingoftheinformationyou asking yourhealthcareteamquestionsthatwill wanting as much information as possible. Consider Patients do nottypically ask manyquestions,despite communication involves: patient Effective professionals. healthcare and make of the most their communication doctors with developed the P.A.C.E. to framework help patients Dr. Donald Cegala of at Ohio the University with yourhealthcareteam How topracticeeffectivecommunication other healthconditions. drugs canbereducedwhencombinedwithfor supplements. The effectiveness of some Parkinson’s medications youaretaking,includingnewvitaminsor your doctor, askaboutrefillsandbringanynew your medicationexperienceiscrucial.Whenvisiting so keepingyourhealthcareteaminformedabout set ofsymptomsandsideeffectstomedication, Every individualwithParkinson’s willhaveaunique rack yourmedications,includingschedules, 3.

E – C – A – P – T doses andsideeffects. recommended treatment e  not provided asking you arefeeling  presenting that isgiventoyou checking xpressing anyconcernsaboutthe questionsifdesiredinformationis yourunderstandingofinformation detailedinformationabouthow • • • Additional resources: [email protected] or1 at and supportservices,contactCarolineWiggins parkinson.bc.ca. To learnmoreaboutoureducation track your symptoms and medications, visit For moreresources,including checklists to help sources ontheinternetorelsewhere. can helpyouavoidmisinformationfromunscientific therapies and medications with yourdoctor. Doing so option. Feel freetodiscussalternativetreatments,

48895/how https://www.parkinson.bc.ca/media/ P appt.pdf Preparing foramedicalappointment final.pdf checklist media/134128/parkinsons https://www.parkinson.bc.ca/ Comprehensive CarePlanchecklist: care media/31542/preparing helpsheet: https://www.parkinson.bc.ca/ .A.C.E. Framework helpsheet: .A.C.E. - professional.pdf - for - - to comprehensive - talk - to - your - for - - - health disease - a care - - 800 medical parkinson.bc.ca - - - plan_

668 -

- - 3330.

www. 2018-08-08 4:42 PM

9 VIEWPOINTS

­ 2018-08-08 4:42 PM continued on next page… Social isolation is something that happens to both the that isolation is something Social Friends caregiver and the person with Parkinson’s. and acquaintances tend to fade out of contact and you soon learn who is a true friend. Cherish these How others can help Adapting living well to change and things and rewarding accomplish Accepting the little A never giving up to the disease. ments are part of for any information or assistancesimple “thank you” Just being received goes a long way. you have given or day and trying to have as goodgrateful for another as possible is important. and as long of a life is other and discuss what Be open with each . happening, and above all else, look after yourself can becomeThis is not an easy journey and stress and tryit of top on Stay home. your in constant a skinthick a develop and destress to way a find to or statementsso that you can deflect hurtful actions are by and largeby reminding yourself that these continue a normalunintentional. My best advice is to activities thatlife as much as possible. If you have up. I have curledyou have participated in, keep them weekly duringfor over 30 years and still do it twice wanted to do orthe season. If you have ever really wait! Travelling accomplish anything, do it now – don’t surprised how itis a good thing and you would be as long as you helps the stress levels as well. Work helpsaspect social the as so, doing comfortable feel I retired this yearto keep you level headed at home. as well asand am now looking for volunteer positions, spending more time with our grandsons. John mayalthough SuperWalk, in also participate We have to use a scooter to cover the distance this year – need to be grateful for what we have and oh, well. We not dwell on what could have been. This is another hard concept for me to absorb and put into practice but I am constantly working on it.

corner carepartner The route to diagnosis and becoming a The route to diagnosis and caregiver with Parkinson’s As is the case with many people twisted route to disease (PD), ours was a long and was restless legs diagnosis – over two years. First, it Once we were syndrome, and then “Parkinson’s-like”. Clinic at UBC,able to visit the Movement Disorder diagnosis my husband, John, received an immediate that feeling strong a had I disease. Parkinson’s of signs that this was the case just from the physical suspicion, the he was displaying. Even with prior accept and for a pronouncement of PD was hard to That was back in good deal of time I was in denial. specialist felt that 2010, but the movement disorder 7 years. From he had been misdiagnosed for about this is a common speaking to others with PD, I know occurrence. In the beginning, I really didn’t have much of a carepartner role, mostly just reminding him of his medications. Over the past eight years, we have evolved the carepartner role to include any physical help he might need, including ADLs (activities of you try to make your daily living). As a carepartner, loved one’s environment as accommodating as possible so they can be independent for as long as and limitations their of conscious Remaining possible. as well as providing rearranging whatever is necessary, a safe environment, becomes second nature as you try to keep them active and involved in daily life. Being realizedo not job and people 24/7 is a a carepartner how much effort goes into everything! Donna McRae is a carepartner for her husband, a carepartner for her husband, Donna McRae is member of the Parkinson’s John, and an active learned has she what shares she Below community. others. her advice to journey and on her carepartner Out of the Frying Pan andOut of the into the Fire FALL 2018 FALL

VIEWPOINTS 10 Viewpoints Fall 2018 Aug8.indd 10 friends! And please do not be those people who always better as someone always misses something leave. We all have busy lives, but take the time to or misinterprets what is said. call and ask how it’s going or offer a coffee date or Being given a diagnosis such as PD initiates the to go for a walk. Ignoring the PD family and leaving grieving process. There are many steps prior to contact up to them can cause resentment and an acceptance. I know that I was in denial for quite a ever-increasing sense of isolation. Slowed speech while and refused to attend support group meetings. and softening of the voice also occur in people with Friends became my sounding board and gradually I PD. When they are searching for a word, please do accepted the diagnosis and started participating in not interject! Let them indicate if and when they PD-related events. John and I have now co-led our might like assistance. Likewise, in a group, don’t support group for several years and I find it rewarding. talk around them – that just furthers their feelings Trying to help someone through a difficult time – even of isolation. if just by calling them – just seems right. Be strong, but also be vocal and try to initiate change so that Advice for your journey with Parkinson’s someday soon we will find a cure for Parkinson’s! Do your research and keep abreast of new Parkinson Society British Columbia offers a breadth developments but be sure to seek out reputable of educational resources and support services for sources. Attend as many events and webinars carepartners. Learn more at www.parkinson.bc.ca/ as possible, even if for the simple reason of resources or contact Caroline Wiggins at cwiggins@ reminding yourself that you are not alone. Voice parkinson.bc.ca. your concerns and try very hard to attend doctor’s appointments with your partner. Two sets of ears are

DR. KLUGER DISCUSSES CANNABIS RESEARCH AND PARKINSON’S DISEASE continued from page 5…

stick with that dispensary and their products. The on the lungs and vocal cords. The disadvantage of oral second thing is to start with a low dose and go up products is that a lot of the time, absorption is harder slowly. A third thing is to try and tailor your use of to predict in terms of timing as well as dosage. I do cannabis to the symptoms you wish to treat. For have some patients that will use a vape pen to get example, in people who are having pain, often what targeted hits to smooth out certain symptoms. We we will do is start with a cream or a patch, which can really want to make sure we are using the right product be helpful for pain and tends to have less of the for the right symptom, and also that we have a target. systemic side effects compared to oral or smoking products. THC seems to be best for nausea and This Ask an Expert feature was adapted from Dr. appetite; so if those are the target symptoms, having Kluger’s presentation at Moving Forward, Together, a product with more THC than CBD would be helpful. a Provincial Conference hosted by Parkinson Society On the flip side of that, for things like sleep, CBD British Columbia in June 2017. Recordings from this might be more helpful than THC. event are still available at www.parkinson.bc.ca/ We generally recommend oral products such as drops movingforward. or candies to avoid smoking, which can have effects VIEWPOINTS

parkinson.bc.ca 11

Viewpoints Fall 2018 Aug8.indd 11 2018-08-08 4:42 PM

newsworthy

Thank you to our fundraisers and donors

Shaken, Not Stirred Shake, Shake, Shake On April 28, members of the Prince George Parkinson’s Shake, Shake, Shake was back for its third year on community attended Shaken, Not Stirred, a dinner- May 25! Organized by Emily Chambers, the concert dance fundraiser in support of PSBC and the Prince featured performances by herself, Khari Wendell George Parkinson’s Support Group. The evening McClelland and Dawn Pemberton, as well as a special featured exciting door prizes, two 50/50 draws and a acoustic performance by Paul Pigat for VIP attendees. silent auction, raising $6,835 for PSBC! This year’s concert raised over $21,000, with 60% benefitting PSBC, and the remainder going to the MS Pull for Parkinson’s Society of Canada – BC & Yukon Division! On May 4, high school students from throughout the Lower Mainland and Fraser Valley participated in the Elk Valley Parkinson’s Golf Tournament fifth annual Pull for Parkinson’s, an Ultimate Frisbee Parkinson Society BC extends our deepest gratitude tournament in support of PSBC. Players raised a to Merl Shelley and Adam Toner for hosting the third record-setting $5,294! PSBC would like to thank annual Elk Valley Parkinson’s Golf Tournament on tournament organizers Thomas, Nigel, Lambert and June 2 at the Sparwood Golf Course, raising a record- Mariam for their ongoing support! breaking $7,268!

EDUCATION EVENTS

Workshops Communication and Swallow Workshops Time Out for Carepartners Workshops These full-day interactive and participatory Join us for a day of education, socializing and workshops, led by Registered Speech Language relaxation. Expert speakers will share experiences Pathologist Sherri Zelazny, will focus on the and strategies for coping with the complexities that communication and swallowing challenges faced by arise as a result of Parkinson’s disease (PD). people with Parkinson’s (PwP). • Kelowna – Saturday, October 20, 2018 • Richmond – Saturday, September 22, 2018 • Langley – Saturday, November 3, 2018

12 FALL 2018

Viewpoints Fall 2018 Aug8.indd 12 2018-08-08 4:42 PM Viewpoints Fall2018 Aug8.indd 13 • • • Save theDate! • Community Talks • • • • raser University’sStudentsforHumanity • • ThanksTo:Additional

Saturday, September 29,2018 “Spring ManualDexterityNight”raising$61 Simon F Simon F – Saturday, November24,2018 Regional Conference Centre, Parksville –Friday, October12,2018 Research atP Emotional andMentalHealth produce information&resourcefolders UCB Canadafortheir$3,500gifttohelpus (ATTP) scholarshipswitha$5000contribution support forourAlliedTeam Training Program Sunovion and ourAnnualGeneralMeeting in supportoftheK AbbVie fortheirgenerous$10,000sponsorship $1,000 gift The NorthV “Car F Aya HirabayashiofOrcaHenna’sfundraiserat club bakesaleraising$200 ree Day”inVancouver raising$95 raser University’sPre-DentalSociety’s Pharmaceuticals forproviding partial ancouver HostLionsClubfortheir acific Parkinson’s Research elowna RegionalConference , Vancouver , PrinceGeorge– or call PSBC at1-800-668-3330. or callPSBC please visitwww.parkinson.bc.ca/education-events For moreinformation,ortoregister fortheseevents, • • • Ask theExpertWebinars

THANK YOU TOOURSPONSOR bring extraordinary hope to British Columbians bring extraordinaryhopetoBritishColumbians December 11,2018 Understanding P – Tuesday, November20,2018 How toStaySafeandinY Risks –Tuesday, October23,2018 Cognitive HealthInfluencesonF Everyday Heroes.ExtraordinaryHope. Heroes come in all forms – register today to Heroes comeinallforms–registertodayto

Parkinson SuperWalk isoperatedbyParkinson BC Society UPCOMING EVENT British ColumbiaunderlicensefromParkinson Canada affected byParkinson’s disease.Visit www.parkinson.bc.ca/superwalk Join usfor Parkinson to registeronlineordonate. SuperWalk! alliative Care–Tuesday, our HomeforLonger parkinson.bc.ca

all

2018-08-08 4:42 PM 13 VIEWPOINTS wills & estate planning

Leaving a Legacy your family in the following order: parents, siblings, nieces and nephews. If no relation is found following We all leave a legacy; some in the hearts of family this, your assets go to the government. and friends, some in the next generation we have influenced. Your legacy represents the values What is probate? meaningful to you during your lifetime. Every will names an executor, who is the individual or For most people, their will is a way of looking after the company responsible for submitting an application people they care about. Making a will and planning to the court to determine the validity of your will. for end of life are important steps in supporting your This process is called probate. All estates over family and carepartner(s) by alleviating some of the $25,000 generally need to be probated. Whether stress and burden of decision making. or not a will must be probated also depends on the financial institutions that hold assets within an Writing and reviewing your will on a regular basis is estate. Some agencies require a will to be probated an important task. To ensure that you have a valid before allowing the funds or property they hold for will, we strongly recommend enlisting the services the deceased to be distributed. of a professional. Certain fees may be charged depending on the size Why should I prepare a will? of the estate, up to a rate of 0.14% for large estates. Your will outlines how you wish to distribute your Preparing a will assets after you pass, whether it be to your children, spouse, friends and/or charitable causes. It allows There are certain formalities you need to follow you to specify where your money, investments, real when making your will. Although legal advice is not estate and other property will go, including cherished required, you may want to consult a lawyer, estate belongings like jewelry or artwork. As part of your will, planning professional and/or a notary public to you can also set-up trusts for minor children, and ensure that you have drawn up your will correctly. appoint them a legal guardian. A well-prepared will ensures lower costs, fewer mistakes and deficiencies, and minimized taxation. What happens if I die without a will? If you want to leave a gift to charity, legal aid is especially important. Under provincial law, the government distributes your assets for you if you have not prepared a valid will. The formalities: In this case, your estate can only be administered to • wills must be in writing family, and any dependent children will be appointed • wills must be signed and dated at the end by the a guardian by the court. will-maker, in the presence of two witnesses If you have a spouse and no children, your estate • witnesses must not be beneficiaries or spouses would go to your spouse. If you do have children, of beneficiaries, and must be of legal age then the distribution of your estate would depend • will-makers must be of sound mind VIEWPOINTS on whether you have children in common with your spouse, or if they are your descendants only. If • will-makers must not sign under duress, coercion your children are minors, their share is held in a or undue influence government trust until they reach 19. If you have no spouse or children, your estate is distributed to continued on on next page…

14 FALL 2018

Viewpoints Fall 2018 Aug8.indd 14 2018-08-08 4:42 PM Viewpoints Fall2018 Aug8.indd 15 considered aportionofyourestate,andisnot your death.Propertyheldinalivingtrustisnot You mayalsoconsiderestablishingatrustbefore the other, eveniftheyhavechildrentogether. that onthedeathofonespouse,allassetsgoto jointly anddesignateeachotherasbeneficiariesso death. Manycoupleswillholdalloftheirassets are signedovertotheco-ownerineventofyour homes, bankaccountsandmotorvehicles,which Other propertymaybeheldinjointtenancy, including cannot bedisposedofbymeansawill. accounts andretirementsavingsplans.Thismoney beneficiary, suchaslifeinsurance,tax-freesavings in otherways.Manyholdingscanbeassigneda may wanttoconsiderdistributingyourproperty If youwishtoreducetaxesandprobatefees, estate Other methodsofadministeringyour sign yourinitialsoneverypageofwill. family orbeneficiaries.Itisalsorecommendedto every five years, orwithany new changein the Lawyers generally recommend reviewing your will related legal Do youhave Parkinson’s issues? Through apartnershipwithPSBC,thelawfirmofBlake,Cassels&GraydonLLP offers freeofchargelegalservicestopeoplewithParkinson’s inBritishColumbia. The Litigation Support Program from Blakes addresses legal issues such as discrimination The LitigationSupportProgramfromBlakesaddresseslegal issuessuchasdiscrimination against individualswithParkinson’s intheworkplace;discri services or facilities that are generally available to the public; and, wrongful denial of services orfacilitiesthataregenerallyavailabletothepublic; and,wrongfuldenialof disability insurance or denial of government services. disability insuranceordenialof governmentservices. If youhavealegalproblemre Jean Blake,[email protected] formoreinformation. be involvedwithsettingupandmanagingatrust. subject toprobatefees.However, otherfeesmay at bit.ly/EstatePlanningWebinar. Columbia. Arecordingofthiswebinarisavailable Mary-Jane for Parkinson Wilson Society British wills andestateplanning,presentedbylawyer This articlewasadaptedfromawebinaron to Parkinson Society BritishColumbia,visit • • Options forplannedgiving: and families. on individualswithParkinson’s disease,caregivers inyourwillcanmakealastingimpact a gifttoPSBC contributions. Whetheryourestateislargeorsmall, providing forourprograms,servicesandresearch youare ByconsideringagifttoPSBC, (PSBC). tions likeP charitable giftsinyourestateplanningtoorganiza You canbenefitfromtaxminimizationbyincluding Planned giving F • • • • or moreinformationon leaving legacy gifts

­ lating toParkinson’

Bequests Gifts ofsecurities Gifts ofrealestate Charitable remaindertrustsandannuities Gifts ofregisteredplans Gifts oflifeinsurance www.parkinson.bc.ca/donate/estate-planning. arkinson Society BritishColumbia s disease, please contact s disease,pleasecontact ­ mination inaccommodations, parkinson.bc.ca

­

2018-08-08 4:42 PM 15 VIEWPOINTS Get an annual Stay connected to the membership for you & Parkinson’s community! your household for just $ It’s that time of the year again! Renew your membership with 25 Parkinson Society British Columbia and continue to be part of our friendly, caring and supportive community.

For only $25, you will receive an annual membership for you and your household valid until December 31, 2019.

Reasons to renew your membership:

• Get discounts. Your membership provides you with • Be heard. Vote at our Annual General Meeting and great discounts on events that are not to be missed! add your voice to the community to garner support from donors, sponsors and politicians. • Stay informed. Get the latest information on research, medication, caregiving, exercise, wellbeing • Gain support. Link to our provincial network of more and nutrition when you receive Viewpoints, our than 50 support groups and/or speak with our quarterly newsletter. knowledgeable and compassionate staff.

Visit www.parkinson.bc.ca or return the insert inside this issue of Viewpoints.

Questions? Call or email Susan Atkinson, Donor and Member Services Coordinator 604-662-3240 | 1-800-668-3330 | [email protected]

600—890 West Pender Street Vancouver, BC V6C 1J9 2327775

Viewpoints Fall 2018 Aug8.indd 16 2018-08-08 4:42 PM