How can I get the most out of my relationship with the members of my healthcare team?

Douglas HobsonDr. Douglas Everett Hobson
Neurologist
Director, Movement Disorders Clinic, Deer Lodge Centre
Winnipeg, Manitoba

• Stay in touch with your family physician. Even if he or she defers decisions about Parkinson’s disease to a specialist, your primary care physician is often the person who will carry out the specialist’s suggestions.
• Arrive on time for appointments or call ahead to say you will be late.
• Bring a family member or close friend who knows you well.
• Always bring a list of your current medications and your pharmacy’s telephone number. If possible, keep track of previous medications you have tried, the maximal dose and any side-effects.
• Focus on the two to three main issues at each appointment. Realize the doctor cannot always see you on time or address all your concerns in a single session.
• Be honest. Doctors find it difficult to manage patients who say what they think the doctor wants to hear as opposed to saying the truth.
• Make sure you fully understand any new instructions before you leave.
• Take advantage of the resources provided by allied health professionals.
• Beware of internet “cures.” In the absence of current cures, the world of treating chronic illnesses is full of fraudulent claims that may not only be ineffective but also dangerous. Discuss any “cure” first with your doctor.
• Remember, doctors can only provide advice. Ultimately, you have to manage your illness and that also means managing your health. Eat well and keep mentally and physically active.

Lucie LachanceLucie Lachance, B.Sc., M.Sc.
Clinical Nurse Specialist
McGill Movement Disorders Program
Montreal Neurological Institute and Hospital
Montreal, Quebec

Think of the clinical nurse specialist as a companion on your journey, providing continuity of care. He or she is a contact point for patients and family members and a liaison with members of the multidisciplinary team. Take advantage of the clinical nurse specialist’s ability to provide information and advice on symptom management and other concerns during clinic visits or by telephone. The support of the clinical nurse specialist can help you adjust to the many changes you will face.

Janet MillarJanet Millar
Physiotherapist
Maritime Parkinson Clinic
Dalhousie University
Halifax, Nova Scotia

Physiotherapists need to know what you’re experiencing on a day-to-day basis in order to offer appropriate advice for improving your activities of daily living and enhancing your health and fitness.
• Make a list or know what you want to discuss at each visit.
• Be honest about what bothers you most, what limits you most, and what you are willing to do to contribute to your own well-being. If you tell us that you’re not going to do exercises, we can ask if you like to play golf or swim. It’s our job to pinpoint activities that work for you.
• Follow our suggestions.
• If you have difficulty following the recommendations, call and ask for help; don’t just quit. We would like to know why you’re unable to follow through and what we can do to change that.
• Keep an open dialogue with your health team. If you read or hear about another technique or strategy, discuss it with your health team first. You need to have a team you can count on.

Tips for choosing and working with the right pharmacist
(supplied by Parkinson Society British Columbia)

► Ask if the pharmacist is familiar with Parkinson’s medications.

  • Does the pharmacist clearly explain the differences between Parkinson’s medications, the side-effects and potential drug interactions?
  • Is prescription home delivery available? Cost?
  • How quickly can refills be supplied?

► Before filling a new prescription, bring a list of all your medications including:

  •  Parkinson’s medications
  •  other prescription medications
  •  over-the-counter medications, including common drugs such as Aspirin
  •  vitamin, dietary or herbal supplements

► Share this information with the pharmacist and ask if there are any potential complications from using the medications together.

► Have the pharmacist review the doctor’s instructions with you, including:

  • how many times a day to take the medication
  • whether it should be taken with or without food
  • how the medication should be stored
  • what to do if a dose is missed
  • possible side-effects and what to do if they do occur
  • warnings and precautions

► While on medication, speak to your pharmacist if you:

  • experience any of the side-effects and are unclear what to do
  • experience any unusual reactions, such as, constipation, urinary problems, nausea, mood swings, and/or sleep disorders
  • miss a dose and can’t recall what you should do
  • have any questions about your treatment
  • have any questions about generic substitutions

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Focus on creativity

Creative Expressions is a new web page we have launched to honour the artistic talents of the many people with Parkinson’s who have chosen to communicate and express themselves through creative writing, visual art and crafts.

Visit Creative Expressions to see their work.

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Working with One Voice

Yvon Trepanier By Yvon Trepanier,
Chair, National Advocacy Committee

First steps taken toward national research study

Over 3,000 people with or affected by neurological disorders responded to an online questionnaire, in February 2009, asking what types of information should be collected for a four-year national research study to uncover the incidence, prevalence, risk factors and impacts of neurological conditions across Canada. The study is spearheaded by Neurological Health Charities Canada (NHCC), a collective of organizations that represent people with chronic, often progressive, brain diseases, disorders and injuries in Canada. The federal government has committed $15 million to fund the project. Parkinson Society Canada plays a leadership role in the NHCC.

Tulips sent to Parliament Hill

For the April Parkinson’s Awareness Month, the National Advocacy Committee:
• sent fresh tulips to the Prime Minister and federal Minister of Health;
• had an Awareness Month announcement  read in the House of Commons by Barrie MP Patrick Brown (download wmv), and read in the Senate by Senator Sharon Carstairs;
• mailed Research Highlights (pdf) to all MPs and Senators, along with a letter signed by PSC President & CEO Joyce Gordon and National Advocacy Committee Chair, Yvon Trepanier;
• sent an information page to all MPs for inclusion in their householder newsletters.

Tell us your experiences of genetic discrimination

PSC is participating in an initiative, led by the Huntington Society of Canada, to persuade the federal government to create legislation that will protect the privacy of individual genetic information and protect against discrimination based on genetic predisposition to disease. If you have had personal experience of either a breach of privacy of genetic information or genetic discrimination, contact us at general.info@parkinson.ca.

Meet us at the PSC Advocacy Café

Advocating for a better life for Canadians with Parkinson’s disease and their families is a community effort. We need your voice and support. You can join us at the PSC Advocacy Café to share information and ideas on how we can work together, or send an email to advocacy@parkinson.ca.

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SuperWalk for Parkinson’s 2009 registration is now open!

SuperWalk Logo 2009

Register Here!

You could win one of two terrific Early Bird prizes!

SuperWalk for Parkinson’s 2009 takes place on Saturday, September 12th and Sunday, September 13th, in over 80 communities across Canada. Join in the excitement as SuperWalk heroes unite to bring Canadians one step closer to a cure for Parkinson’s.

You have made SuperWalk for Parkinson’s Parkinson Society Canada’s largest national fundraising event. It is also at the core of the Society’s efforts in the battle against this debilitating disease that affects more than 100,000 Canadians. Together with you, our goal is to raise over $2.4 million to fund research, education, advocacy and support services for people living with Parkinson’s.

Naturegg is a proud National Sponsor, for a fifth year and Megg, the Naturegg Early Bird is already breaking in her new walking shoes.

Join the Naturegg Early Bird at SuperWalk for Parkinson’s 2009!

Register now  to enter the draw for Early Bird prizes!
· Raise $100 online, by April 30, for a chance to win a $500 Chapters/Indigo gift card
· Raise $250 online, by May 31, for a chance to win a 32″ SHARP AQUOS TV

Note: Winners will be announced on the SuperWalk website. Contest is not open to employees of PSC and its regional partners or to any members of their immediate families.

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