With Assistive Communication Their Voices Will Still Be Heard
The loss of words
hurts. If you know of someone who is in
danger of losing their words because of Huntington's disease, HD, I hope you will become a their advocate and look
for the tools that will continue to give them a voice. Please feel free to contact me or find
helpful resources on the internet such as CommunicatePA.
There are times I struggle to understand what someone with HD is telling me. I often ask someone to repeat what they are
saying. There are many occasions I apologize as, despite their repeated efforts,
I still cannot understand what they are saying. I am glad when I find photos on the walls and
window sills of a room in a nursing home.
Those pictures give me something to talk about during my visit to an individual with HD. This is especially true when their advance Huntington’s
symptoms includes their loss of understandable verbal communication.
These experiences heighten
my sympathy and encourage me to advocate for support for anyone who is losing
their ability to speak.
Within the last two
months my advocacy has been successful. For
two individuals with HD, in two different nursing homes, the speech and
communication therapists are preparing both of them for the time they will need
assistive communication. Both of them still
talk. For one, it is difficult to
understand her on the phone and when she is upset almost impossible. For the other, a young man in his late 20s,
he admits that sometimes he cannot remember the word he wants to use. I am thrilled that both individuals will continue
to have words even when those words are not coming from their mouth. Work
is underway to prepare both of them to use assistive communication.
It is important to use
assistive communication early. First,
this specialized equipment is expensive and finding the funds for it
can take time. I expect that cost will
become less of an issue as inexpensive assistive technology apps become
available for downloading onto someone's cell phones and tablets. My firsthand experience came from downloading
free versions of the apps, Talking Tiles and Prologuo2Go. The ability to learn is a second reason to
start early. The ability to learn new
things becomes harder the more that someone's HD is advanced. Last and the most important reason is that
they both can still speak. They can record
their own voice. They can decide what is
important to them and record those words and phrases to prepare for the time
when they cannot do so.
I am thrilled for
these two individuals. Their words will not be lost. With the help of assistive communication they
will continue, despite their HD, to share their words. Their voice will continue to be heard.
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