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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Parkinson disease alliance: researchers meet in Calgary

Researchers from across the country met with PSC to share their progress in Parkinson’s research, at the Parkinson Disease Alliance meeting, in Calgary, on January 9th and 10th. This third Alliance meeting was hosted by the Movement Disorder Clinic of the University of Calgary and supported by TEVA.

“One of the great things about a meeting like this is that it brings researchers together to exchange ideas and information and have cross-pollination of ideas,” said PSC CEO Joyce Gordon.

Day 1
Speakers and topics included:

• Dr. Heidi McBride: mitochondrial dynamics and folding/unfolding proteins
• Dr. Susan Fox: the multiple roles of 5-HT and the possibility that depression might pre-date PD
• Dr. Serge Przedborski: PD mechanisms and model
• Dr. Nicholas Dupré: screening candidate genes for PD in a specific population
• David Park: DJ-1 and LRRK2 in models of PD; is it management or response to oxidative stress
• Dr. Mandar Jog: neuroelectrodynamics
• Dr. Alex Rajput: differentiating Essential Tremor and PD
• Dr. Ron Postuma: Sleep and PD; prediction and heterogeneity; olfactory as prediction
• Dr. Sam Weiss: Neural stem cells

Demonstrating the power of collaboration, the group discussed Centres of Excellence and the possibility of applying for a National Centres of Excellence grant.

Day 2
Clinicians reviewed clinical guidelines from other countries, in preparation for creating Canadian consensus guidelines or clinical practice guidelines for the management and treatment of PD in Canada.

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Message from the Editor

Welcome to our first electronic edition of Parkinson Post.

We’re delighted to launch this new format on the 10th anniversary of Parkinson Post and hope that you will share in our excitement in being able to reach more members of the Parkinson’s community.

Modern times call for new ways of connecting with people and that’s what communications is all about, so it’s fitting that this issue is devoted to exploring communications and its importance to Parkinson’s disease. We begin with a first person account of how one man is fighting voice deterioration and end with a look at what’s new in Parkinson’s medications.

Thanks to our loyal Parkinson Post subscribers who donated the remainder of their magazine subscription dollars to a one-time Parkinson Post graduate student fellowship in research. Your generosity helped us raise $17,000.

As always, send in your comments and ideas to keep the dialogue going. You can reach me at editor@parkinson.ca.

All the best of the season.

Marjie Zacks
Editor

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First Person

Fighting Voice Deterioration: A Therapy That Works for me By George Copeland

It all began in the autumn of 2006 when I received a call from Bonnie Bereskin, M. Ed. Speech-Language Pathologist at Baycrest Centre, Toronto, whom I met and worked with while taking a course in self-management of Parkinson’s disease (PD). She proposed that I participate in a year long speech exercise research program known as the Lee Silverman Voice Treatment for Parkinson’s. 

PD has many symptoms, a primary one being speech deterioration. The bad news is that without therapy, the voice gets weaker, which may result in loneliness, poor self-esteem, isolation, and difficulty in swallowing with the inevitable consequence of choking. The good news is that research has shown that regular speech exercises can strengthen the voice, improve swallowing, and minimize choking.

The research program, which Bonnie explained, was to be for 12 months and would require the assistance of several persons to form a Communication Circle to interact with me as the patient. Where to find the necessary helpers? My wife and I hit on the idea of requesting help from my Kiwanis Club of Don Mills, Golden K. This would help involve and train family and friends in the proposed therapy.

Early in 2007, my wife Nancy made a request for volunteers to my Kiwanis group. An astonishing 19 members came forward – 18 volunteered to serve as coaches and one to coordinate it all. Organization took place swiftly and on March 1, 2007 after two hours of education and orientation, the 18 volunteers and one coordinator were ready to begin a one year commitment to do speech therapy with me in my home. The more volunteers that are available the less frequently they have to practice with me. As a minimum it was suggested that I practice four times per week.

During that 12 month period a separate coach met with me four times weekly to conduct measured speech exercises and to converse in sessions of about 45 minutes to one hour in length. I was encouraged to speak with volume and to match and exceed previously achieved exercise scores for which detailed records were kept.

The results have been breathtaking. My natural voice has been restored and I am enjoying the benefits, as is the world’s best caregiver, my wife, whose encouragement and leadership have been critical. My coaches are delighted and have assured me on several occasions of the joy and warm feeling that comes from helping another person.

At our third quarter annual meeting of my speech language pathologist, coaches, and my wife, Bonnie praised the work of the volunteers. “You are a group of skilled coaches who have helped George to attain a louder stronger clearer voice with interesting inflections.”

At the end of the 12 month commitment, the volunteers decided that they wanted to continue the program and indeed have accepted a temporary change in venue from my residence to Bridgepoint Hospital (as I had a fall). Not one of the volunteers has resigned and in fact, their numbers have grown due to interest in the program. Their loyalty and advice have been phenomenal.

The techniques involved in this speech therapy have been so successful and cost-effective (Kiwanis services are free) that there is considerable interest in rolling out the program to the benefit of other persons with PD.

George Copeland Q.C. is a retired lawyer living in Toronto. He has been living with Parkinson’s for nine years. Mr. Copeland prepared this article with the encouragement and assistance of Leila Khunaysir, Recreation Therapist, Bridgepoint Hospital, Toronto.

george-and-his-coaches-300-dpi

George and his Coaches
Front Row: Bob Ward, Brain Smale, George Copeland, Al Hall, Ernie Magee
Middle Row: Bud Brown, Ken Allen, Keith Allen, Tony Mason, Robert Boyd, John McReynolds
Back Row: Harold Oliver, Doug Hicks, Stan Stevenson, Warren Wyatt

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Communication Circles

Communication circles – a guide for people with Parkinson’s and families
By Bonnie Bereskin, M. Ed., Speech-Language Pathologist at Baycrest Geriatric Health Care System in Toronto.

The challenge of maintaining clear speech can cause many people with Parkinson’s to withdraw from friends and social activities. However, with intensive practice, communication losses can be delayed and minimized. A cost-effective way to provide intensive speech therapy is by tapping into your social network to create a circle of people who can help you practise speaking in person or by telephone.

Communication changes in Parkinson’s

Voice. The voice becomes quiet and monotonous in intonation.

Articulation. Speech sometimes sounds slurred. Consonant sounds are weakly produced.

Rate of speech. Some people speak too quickly so their speech becomes difficult to understand.

Facial expression is reduced.

Cognition. Complicating the speech changes of Parkinson’s are changes in one’s ability to think. Individuals find it hard to pay attention to a task. Some people become impulsive and begin speaking without planning for a loud voice and slow speech.

Advantages of communication circles

Communication circles provide intensive, on-going and cost-effective speech therapy. Why are all three features essential to maintaining speech with Parkinson’s? Intensive practice, four times per week, has been shown in the scientific literature as the minimum amount required in order to improve and maintain functioning. Ongoing treatment is important for Parkinson’s as it is a chronic illness. The benefits of cost-effective therapy are obvious. Few of us have extra dollars crowding our wallets.

Since Parkinson medications have little effect on speech, therapies have been developed to improve the loudness and strength of the voice and to slow the rate of speech. Before creating a communication circle, it is best to have an assessment with a Speech Language Pathologist who can develop a specific speech and voice therapy program for the person with Parkinson’s and train the volunteers.

Six steps for creating a communication circle

1. Recruit volunteers. They are not only good for the voice practice; they also bring fun, laughter, companionship and interest.

2. Hold an education session about PD, its symptoms, and the course of the illness. Few volunteers will have prior experience or knowledge of Parkinson’s.

3. Invite a Speech-Language Pathologist to discuss communication changes in Parkinson’s, the Lee Silverman Voice Treatment for Parkinson’s, communication exercises and other relevant treatment approaches.

4. Ask one of the volunteers (with organizational skills) to be the group facilitator whose duties will include sending out a monthly schedule of practice times.

5. Have volunteers arrange for someone to replace them when they are unable to attend.

6. Hold an administrative meeting once every four months, to share information, Speech-Language Pathologist input, new learning and fine-tune the communication circle program.

Circles that work

George Copeland’s inspiring story describes the process and success of a communication circle.

Here’s how communication circles have helped other clients keep up their favourite activities

 

  • One person recruited members of his community theatre group who encouraged him to participate in musicals.
  •  Another person chose fellow members of his local Kiwanis Club who encouraged him to introduce speakers at their meetings then gave him feedback on the effectiveness of his communication.
  • Yet another circle takes place mainly over the telephone. The volunteers, recruited from family and associates of a friend, practise the speech exercises on the telephone and sing songs with the person with Parkinson’s who is a retired singer.
     

bonnie-in-scotland
Bonnie Bereskin, M. Ed., Baycrest Centre, Toronto

 

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