Imagine for a moment that you are trapped in a body over which you have less and less control. Your speech is slurred and your words are gibberish. It is becoming impossible for you to eat or drink without choking and for you to walk. Each step you take cannot be without careful intention or you are sure to fall. Your limbs, though connected to your body, will not do what your thoughts tell them to do. Simple, everyday things like brushing your teeth, getting dressed, cutting your food, carrying your coffee cup, preparing meals, speaking on the phone or chatting with your kids become impossible without specialized devices, help from friends and family, and a lot of frustration and energy.
This imagination is my everyday reality. I do not know what my illness is or what is causing it, only that my symptoms have been steadily and quickly getting worse. I use a wheelchair and scooter and have a feeding tube now, although I do sneak in chocolate as often as possible. I live alone with my 16 year old daughter, in a home I purchased, that is in process of being converted to be wheelchair accessible.
I left my career of 20 years as the founding Executive Director of the Early Childhood Community Development Centre, a community-based not-for-profit organization and as a public speaker on August 31, 2012. I worked as long as my condition would permit, because I loved my job helping make a difference to the lives of children and families in Niagara and beyond.
For eight years now, my family and I have gone from doctor to doctor and clinic to clinic seeking answers. We have called in every favour and I’ve spent much of my savings purchasing specialized devices and getting my case reviewed by some of the world’s leading specialists in rare neurological genetic disorders. They still have no definitive answers, however doctors at the Gloria and Morton Shulman Movement Disorders Clinic in Toronto, with the assistance of researchers and doctors at the National Institutes of Health in Maryland, the Mayo Clinic in Minnesota, Columbia University in New York and the University of Washington are all pursing the possibility that I may suffer from a disease known as Neimann-Pick Type-C, or some variant of it.
I have the highest praise for the care I receive from the Augmentative and Alternative Communication (AAC)Team at Hotel Dieu Shaver Health and Rehabilitation Centre. Charlene Cratt, Senior Speech Language Pathologist, who is managing my case, and Nicole Johnson, Registered Occupational Therapist and Heather Housser, Communications Disorder Assistant have the ability, dedication and perseverance to prescribe communication devices that will address the unique and specialized needs of people with communication disorders.
The Communication Team has taken the time to observe and interact with me as they do with all of whom they serve to truly understand our complex, unique and specialized communication needs. They are courteous, professional, efficient and resourceful; seeking the communication aides necessary for those with communication disorders to have a voice.
The team has tried many devices with me to meet my complex communication needs but haven’t been successful with just one device. So we`ve arrived on a cocktail of devices that has allowed me to have a voice, converse to some extent, and with many of hours of support and training from the communication team I will someday soon regain my ability to converse quickly without delay and become more comfortable integrating back into our community. My communication devices include an IPhone, IPad and Unity.
Like most, I use my IPhone for texting, emailing and writing notes. However I use text and email exclusively for non-face to face communication. I also use text to communicate with my 16 year old daughter in and out of our house to reduce the frustration of her tapping her feet waiting for me to compose my message on my other devices. For those of you who have or had teenagers you`ll know they have the patience of a puppy waiting for a cookie.
I also rely on text for emergencies and chatting with friends and family rather than using a phone which I can`t. When I’m out and noise levels are high I often use text to communicate with those whom I`m with and the note pad for relaying information. The IPhone is less noticeable and easily portable.
I use a mini IPad with a Predictable app. Predictable is a comprehensive text-based communication app which I use daily to communicate. I pre-store questions and messages I need to communicate to my personal support workers, nurses, doctors, and others prior to our interaction into the customizable phrase bank. I also use the Predictable app to converse but because it is text based I must spell everything I want to say.
Think about how quickly you speak, how your conversations flow fluently without pause and how many questions are asked during your conversations. Now think about having to spell your entire conversation and ask and answer questions with a key pad.
My guess is that you’d realize conversations are neither quick nor fluent, lots of silence, attention is lost, delays in answering questions typically result in additional questions being asked, and new subjects arise before responses are given. Needless to say discomfort and frustration occurs. Typically I am three or four subjects behind. So people are speaking about desert and I am still typing about appetizers!
Unity is a unique language system used to represent language. It uses picture sequences to create words, phrases and sentences as quickly and effortlessly as possible. Because this is a language based program it allows users to intuitively memorize the picture sequences allowing for speed and fluency which is required to be fully participative in meaningful conversations. The weakness of this program is its operating system is not easily portable and it takes months of practice and hours of teaching and support to become a fluent Minspeak user. However, it is my hope that with my dedication to learn Minspeak and the ongoing commitment of the AACTeam to teach and support me; I will someday soon regain my ability to converse quickly without delay and become more comfortable integrating back into our community.
The AAC Clinic at Hotel Dieu Shaver Health and Rehabilitation Centre is vital to me and others with communication disorders. I hope you can see why.
Myself and others with communication disabilities cannot do this alone. With the AAC Communication Team at Hotel Dieu Shaver Health and Rehabilitation Centre we are not alone. They give us "Comfort, Care and Hope."
~ Tammy McCormick Ferguson