Yesterday, Mauril Belanger did something that no one else has ever done. He used an AAC system to work as the Speaker of the House in Canada’s Parliament (view video). Mr. Belanger has ALS.
ALS is a devastating neurological disease, a degenerative condition that may initially manifest itself in difficulty speaking. Mr. Belanger was diagnosed last November, after dealing with a “mystery” voice condition in recent months. Four months later, he can no longer speak and needs to use a walker for mobility.
In BC, there are three main resources for people who have received a diagnosis of ALS. The ALS Society, the ALS Centre at the GF Strong Rehabilitation Centre, and CAYA – Communication Assistance for Youth & Adults.
CAYA is a provincial resource program that provides support to adults in BC who require an AAC system due to a severe communication disability, i.e. their speech does not meet their daily needs. Support for people with ALS can include voice amplification, voice/message/story banking, technology provision and lite tech system creation. Communication needs will change as an individual progresses along the path, and CAYA staff assist with revising the system and training as required.
A diagnosis of ALS leads to extreme mental and emotional stress, as well as physical deterioration. It is understandable that someone might be resistant to help at the beginning, but the sooner a person can refer to our program, the more we can do to assist them to communicate when their speech is no longer functional. Having said that, CAYA is a community program and not an acute care service. If a person waits until the last moment to attempt to access our services, there will be a point whereby we cannot help them.
If you know of someone diagnosed with this disease, please download our Request for Service from our webpage and support them to access our program. It is vitally important that everyone can communicate what they need to say, whether they can speak or not.
Lois Turner, RSLP