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


What else do I have?

Hi folks:

… I must finish these blogs in one sitting!

I have been doing a lot of recent blogs on Deaf-Blind issues and intervenors. I need to cover all bases.  I am also an Ataxian.

What’s that?  That is a person who has ataxia.  Same as Canadian or the like…

Ataxia has many onsets, and various levels of severity.  I found this list and I have to say that I am textbook!  In fact, if you open the dictionary, and look at ataxia, I’d be very surprised if my picture was not there!

  • impaired coordination in the torso or arms and legs.
    • Yes, I am often jerking left or right, up and down.  Standing I sometimes fall over for no reason, sitting I can do the same.  I do not actually fall, but I come close.
    • I often bend over to pick up a sock, and keep going in that general direction.
  • frequent stumbling.
    • Surely, stumbling and whacking a car door is pretty dramatic.  Three hours in ER should do the trick, nothing is wrong!  I stumble over cracks in sidewalk and uneven pavement scars me.
  • an unsteady gait.
    • I like that, instead of “drunken” gait, I can dodge and weave, jive, meander like an old river, and because my vision is pretty bad, I have no depth perception, iI often walk into things that seemed far, yet were close.
  • uncontrolled or repetitive eye movements.
    • that too is a pickle, I seem unable to keep eye contact for long.  In Deaf Culture eye contact is an important part of interactions, yet I can’t seem to keep eye contact for long.
    • I use eyes to watch communication right, so with this uncontrollable eye movements, my eyes get tired and I tend to zone out.
  • trouble eating and performing other fine motor tasks.
    • when eating, I might choke or cough or swallow small things… I’ve been known to cough, sneeze and laugh at the same time!
    • in terms of fine motor skills, yeah, that is proven.  using my new smartphone keyboard is a challenge, I truck around a wireless keyboard now.
    • And fingerspelling, spelling of words using manual alphabet in ASL, has become more sloppy if I am not concentrating on the word
    • My laptop has a touchpad for mouse navigation, I loath it!  Because I can’t always control the movements!  Blarg!
  • slurred speech.
  • vocal changes.
    • when I talk to my kids or wife, my formally strong clear voice sort of simmers and chokes, muttering out something that is not even recognizable!
  • headaches
    • some of them can be weird, short, others long and winding!
  • garbled thoughts (Craig adds…)
    • some thoughts are clear, then I can’t seem to focus on the topic again and I’ll be blah blah.  This is especially annoying when I’m trying to have a basic conversation with my wife, and my thoughts get jumbled up like a tumble dryer on high.

There we go, I am going to leave that for now.  Next topic, Vision on the subway…

 

 

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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.