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.

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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.
     

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Bonnie Bereskin, M. Ed., Baycrest Centre, Toronto

 

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SuperWalk extends reach online

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This past September, 13,000 Canadians in more than 80 communities laced up their running shoes, filled their water bottles, and came out in support of the 18th annual SuperWalk for Parkinson’s. They raised $2.4 million for Parkinson’s research and support programs for Canadians living with Parkinson’s.

A staggering $1.1 million was raised through Internet pledges, with resourceful walkers soliciting donations from as far away as Scotland, South Africa and Australia. “The beauty of the online system is that we’re able to get donations from around the world and tap into a broader network of people,” says Beverly Crandell, Parkinson Society Canada’s National Director for Resource Development.

The next SuperWalk takes place on September 12-13, 2009.

It’s a family affair

Kenny Bearg begins his annual fundraising drive every July and makes sure he’s up to the physical demands of the SuperWalk by going to the gym every day at 6:30 a.m. Since he was diagnosed with Parkinson’s in 2003, at the age of 51, Kenny has not missed a single SuperWalk. He has raised about $250,000 over the past six years.

Even as he juggles the demands of a successful business and a busy life, Kenny makes SuperWalk a priority and a family event. “This year, my eldest daughter and my two grandchildren walked with me and we really enjoyed it,” says Bearg. “Last year, my youngest daughter walked in the Parkinson’s event in New York.”

Kenny says he and his family walk to show solidarity for Canadians affected by Parkinson’s. “When I was diagnosed, I called Parkinson Society Canada,” recalls Bearg. “I am forever grateful for the help and support I received. I’ll keep walking in SuperWalk and raising money. I’m fighting this the best way I can and I feel good about it.”

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New collective generates big research investment

Parkinson Society Canada’s leadership, in bringing neurological charities together, has resulted in the establishment of Neurological Health Charities Canada (NHCC), a new collective of 15 organizations that represent Canadians with chronic, often progressive, brain diseases, disorders and injuries.

NHCC’s role is to provide leadership, evaluating and advancing new opportunities for collaboration specific to advocacy, education and research projects, related to brain health. The collective is already having an impact.

The Conservative Party of Canada has agreed to provide $15 million for a four-year study of Canadians with illnesses such as Parkinson’s disease. NHCC members will work with the federal government to develop the framework for the research program.

The Ontario Government has committed to working with the NHCC, during the coming year, to develop a provincial neurological strategy, which may serve as a model for other provinces.

For more information on the NHCC, visit www.neurohealthcharities.ca.

NHCC Members:  ALS Society of Canada, Alzheimer Society of Canada, Canadian Neurological Sciences Federation, Epilepsy Ontario, Huntington Society of Canada, March of Dimes, Mood Disorders Society of Canada, Multiple Sclerosis Society of Canada, Muscular Dystrophy Canada, NeuroScience Canada, Ontario Federation for Cerebral Palsy, Ontario Neurotrauma Foundation, Parkinson Society Canada, Spina Bifida and Hydrocephalus Association of Ontario, Tourette Syndrome Foundation of Canada. 
 

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Members of the NHCC met with Canada’s Minister of Health, June 2, 2008. From L to R: Kent Bassett-Spiers, Ontario Neurotrauma Foundation; Catherine Sherrard, Muscular Dystrophy Canada; Scott Dudgeon, Alzheimer Society of Canada; The Honourable Tony Clement, Minister of Health; Yves Savoie, Multiple Sclerosis Society of Canada; Jo Anne Watton, Huntington Society of Canada; Joyce Gordon, Parkinson Society Canada; Derryn Gill, Spina Bifida & Hydrocephalus Association of Ontario; Dr. Christina Wolfson, Neuroepidemiologist, McGill University; Inez Jabapurwala, NeuroScience Canada; and, Rosie Wartecker, Tourette Syndrome Foundation of Canada.

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Telemedicine improves access

Telemedicine improves access for people with Parkinson’s

Almost every afternoon, Dr. Mark Guttman closes his office door at the Centre for Movement Disorders clinic in Markham and turns on the TV. The waiting room may be empty, but he still has patients to see – via the Ontario Telemedicine Network.

Dr. Guttman describes how it works: “The patient and family go to a local hospital and enter one of the videoconferencing suites. The coordinator at the other end, usually a nurse, helps with the evaluation and handles the equipment. I am in my office. I can see the patient and the patient can see me. We have a conversation. Then I ask the nurse when it’s time to help with the physical examination.”

Using the high-resolution camera, Dr. Guttman can zoom in for a close-up of the patient’s symptoms. He says, “In Parkinson’s, it’s important to watch somebody to observe their speed of movement, their muscle tone and how they’re walking.” Also on hand are the latest tele-diagnostic instruments, such as, digital stethoscopes and digital imaging facilities that transfer information to the doctor.

Videoconferencing is enabling people with Parkinson’s disease in Ontario’s remote communities to access neurologists, like Dr. Guttman, without the time and expense of travelling to larger urban centres. “Some people were driving from Thunder Bay to see me. That’s 14 hours each way for a follow-up assessment that lasts 20 minutes,” says Dr. Guttman. “Now they just go to the local hospital and it’s so much easier.”

Dr. Guttman sees about 12 patients a week or 500 a year, in this manner. Over 90% of these patients have expressed satisfaction with the care they have received. The program is so successful that Dr. Guttman is installing a second videoconferencing suite in his clinic. 

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Dr. Mark Guttman

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