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


CAPOS in Lower Mainland

Hey everyone!

I am excited about a lot of things: mainly that spring is coming!  Yesterday I was out walking and took off my coat for a spell!  The sun was  very warm!

But in connection to CAPOS, I have been informed by my new ataxia specialist at Vancouver General Hospital that she is aware of 3 other people with CAPOS in the Lower Mainland (which is to say Metro Vancouver)!

Plus, my wife, who works as a deafblind intervenor, was told by the school board deafblind specialist that there is a family with CAPOS somewhere in the Lower Mainland!

That’s four CAPOS families!

What’s more?  I met an old friend recently, I chatted about CAPOS, and she mentioned to me that she has a friend with CAPOS!

That is five people or families with CAPOS in the Lower Mainland.  A freaking hotbed of people with CAPOS!

My ataxia doctor did mention the humbling fact that there are a grand total of 30 cases of confirmed CAPOS in the world!  And 6 of them live in the Lower Mainland!  What are the odds!  I am beyond belief!

I hope that the families will contact me!  CAPOS Individuals, you are not alone!

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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.