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


CAPOS search

When I was living in Toronto, two months ago, I had a number of friends who were ataxic, ataxian is the common word.  Then I moved to Vancouver, I have yet to make any connections with ataxia groups, yet.

That was on Friday.

Over the weekend, I found the BC Ataxia Society, and immediately contacted the president.  She was happy to welcome me into the group and informed me their AGM is this coming Saturday!  You bet I’ll be there!

One original goal of this blog was to find more ataxians, specifically those with CAPOS.  I know from various doctors in Toronto, that there are 3 or 4 CAPOS families in BC.  Where, they can’t tell me, even the BC Ataxia Society president has not heard of CAPOS.

That goal is still prevalent.  A newer goal is to teach you, the global masses, what I go through everyday.  Because I have many disabilities, deaf, blind, ataxia, and several others, it is more important to educate than to ruminate, better to proactive than inactive.

Next article: Intervenor Roles!

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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.