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