Exercising your Need to Communicate

First-hand Accounts of Using Voice Applications

Parkinson’s disease can affect many aspects of life. Up to 90% of people with Parkinson’s disease experience difficulty with communication. However, like the disease, the progression and severity of communication issues will differ between people. When communication is impaired, quality of life suffers and isolation grows. Despite these challenges, your desire to communicate can be rewarded with the right tools. Tony Burrows and Val Swannell, members of the PD community, both utilize high tech solutions in their day-to-day lives. To help make the right choices for you, they’ve both agreed to share their stories hoping that it will provide some insight into available solutions. You may also consider:

• Environmental management recommendations such as eliminating background noise when possible, and acquiring eye contact with your communication partner before you start speaking;
• Lee Silverman Voice Treatment® for Parkinson Disease – the gold standard voice therapy treatment; and
• Assistive and Augmentative Communication – these devices can range from a simple picture board to a computer program that synthesizes speech from text

Don’t wait until communication difficulties are interfering with your quality of life. Sherri Zelazny, Registered Speech Language Pathologist, recommends that you and your communication partners begin with a formal hearing assessment performed by a Registered Audiologist. Additionally, it is valuable to have early contact with a Registered Speech Language Pathologist for support in all aspects of communication.

TONY BURROWS was diagnosed with Parkinson’s on March 26, 2012 and subsequently identified as having Parkinson’s Plus, also known as Multiple System Atrophy (MSA). At this time there is no treatment to slow the progression of MSA, a progressive brain disorder, and Tony’s diagnosis means he now has a life expectancy of between three and six years. This life-altering disease has led to diminishing handwriting skills and a failing voice. To assist him in communicating, Nicole Armstrong, Speech Pathologist at Lions Gate Hospital, recommended an app called Verbally (http://bit.ly/VerballyApp) – which has a free version and a premium upgrade available for $99.99.

Tony refers to this as a life-changing app because, “when you think about it all, what are two of the main ways that we, as humans, communicate? Writing and speech – and unfortunately I have been robbed of both”. What’s great about this app, he says, is that it allows you to type what you want to say and play it out loud using a number of different accents and male or female voices. Furthermore, it has a predictive text, or prompt screen, on the side of the app that can often guess the next word you may want to use – saving you time.

If you have a planned conversation coming up, for example with a doctor or neurologist, you can pretype or prepare a conversation and save it under a category name. It will also save a history of your conversations, which can be turned on or off. Jokingly, Tony notes that his “wife hates this history function as when it comes to proving a point, I have proof of what I just said right under my fingertips”.

In addition to providing him with a vehicle to effectively communicate with his family and friends, the app has given him the necessary typing skills to complete two books, “From a Hotelier to Parkinson’s Disease” which is now available from Amazon or Indigo, and “The Journeys. A Positive Approach to Living with Parkinson’s Disease” which is set to be available at the beginning of May 2015.

VAL SWANNELL was diagnosed with Parkinsonism in March 2010 by Dr. Jon Stoessl. Despite the news, having experienced worsening symptoms of speech, writing and balance, she was pleased to have a diagnosis and options for treatment.

In November 2010 she joined the Board of Parkinson Society British Columbia (PSBC) to affect positive change for others living with PD. Val’s key focus now is to “build awareness of Parkinson’s disease (PD), and fundraise to find a cure.” In an effort to work towards her goals, she actively participated in The Parkinson Movement (which last year included cycling in the Penticton Grand Fondo 92 km Mediofondo ) and SuperWalk in September. Val says, “I have learned to ask others for help and have been very surprised and delighted by their positive responses – I must thank many of my friends, colleagues and family for their incredible support.”

Despite having taken and practiced LSVT Loud, her speech has worsened and it has become very difficult for most people to understand her.

To assist Val in communicating, her speech language therapist at Lion’s Gate Hospital recommended the Delayed Auditory Feedback (DAF) application (http://bit.ly/DAFApp). Val has since installed the $10 app on a number of her mobile devices. The app has saved expending thousands of dollars on purchasing a specialized DAF device which would normally cost between $1,000–$5,000.

Initially Val said that the Bluetooth compatible app was a “lifesaver”, but it did pose some challenges. She notes that, “some Bluetooth devices are difficult to use with this as they only have one earpiece. I have found one that is fairly good called the Plantronics Backbeat Go 2, which has two earphones and a microphone. It’s available at Amazon.ca for about $80.”

The app is best used for one on-one conversations in a quiet environment as it is difficult to properly hear someone with the earphones on. If you are able to hear someone, the noise is hard to understand as the microphone picks up sounds that the app then delays. What you’re left with is overlapping deferred speech with real time speech. In noisy environments a lot of background noise can be picked up through the microphone and deferred, which can be frustrating if you’re trying to focus on listening to someone. Despite these concerns, Val would, “definitely recommend this to someone with Parkinson’s disease to try out as it is a reasonably affordable way to assist with your speech.” Though she’s not tried it yet, Val has heard that some headsets use bone conduction which may be a help to users. Stay tuned!

This content was published in the Spring 2015 edition of our quarterly magazine, Viewpoints. The content was accurate as of this publication date.