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


CAPOS disclaimer

Greetings all…I want to take this opportunity to raise awareness about a degenerative neurological disorder called Ataxia. It is a cousin to Parkinson’s, MS, and ALS., and is quite rare. My family has been randomly selected to participate in this journey, through no fault or choice of our own.

As for me, I must also add vision and hearing losses into the mix.  Both myself and my son have this syndrome, its called CAPOS.  Being unable to see or hear “normally” really does make matters much more unique.

And CAPOS affects my family in ways that are beyond normalcy!

This is why I am unable to walk normally, speak clearly, participate in many activities, and may just not be generally as sharp as I once was or would like to be. It is why at first glance, many view me as being moderately to severely intoxicated. Take it from me, it’s a pretty crappy feeling, and I don’t wish this life on anyone.

It is however, the hand I was dealt, and I am doing the best I can with what I have to work with, as like many neuro disorders, there is no effective treatment. All I ask is for some compassion and understanding. As my physical life becomes more hampered, I will always be me. Thanks for listening.

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Swiped from a friend (adding lines on CAPOS)!

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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.