Writings about Ataxia, being DeafBlind, family life. The best life can offer!


The voice of the ataxian

Hey volks!  howr you doing?

I gud and at quickly attempt to do a blog at library.

Part of ataxia is the loss of vocal cords right?  Yes, it is noted that it is a major feature of ataxia.

When I was growing up, I was quite articulated and pretty much loquacious.  I was talkative. Plus I loved, still do, to read and pick up new words and phrases.

When I my hearing started to deteriorate, and I started picking up ASL, I was around 21 or 22 when I started to be more skilled with ASL.  I used my voice at home, with family.

Now, 28 years later, I am much skilled ASL, I yet my voice has gone to hell in a handbasket.

Over the last 4 years I have noticed words with two or three syllables have become unattainable.  Most notably are:

– Chocolate

– Tablet

– Psalms

– Furniture

– others to come later.

My thought processes and my voice are not always on the same page.  What I meant to say is not what actually comes out.  The same happens, on occassion, when I signing.

It is part of my neurological ataxia.  And, sadly, it will get furse.

Bear with me, patience please, if you meet me and I spray you with nonsense blather.  I am trying hard to tell you something!

Thank you for listening!

Please share if you can, like if you must, consider donating to http://www.gofundme.com/capos if you wish.

 

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About the author

Craig MacLean is DeafBlind with ataxia, a rare condition called CAPOS. He & his wife of 22 years have two sons, the oldest of which has CAPOS as well.

Craig uses American Sign Language to communicate. He is an avid writer, friend, Hot Wheel collector and intervenor advocate.

Craig sits on many committees, boards and associations as a DeafBlind rep. He graduated university with a BA in psychology in 2000.