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


Getting back my motivation

Hello folks…

According to WordPress, I haven’t written anything since July!  Egads!

This blog was originally written November 15, 2017, I am updating it and putting on my CAPOS page for your reading pleasure!

So, an update and then part A of CAPOS, in another blog entry.

My ataxia is noticeably worse… I’ve been “teetering” on the verge of falling, but manage to grab hold of something.   I am extremely lucky that there has been something to grab onto, a wall, a chair, an arm, my cane, anything stable.

ataxia skills

Because of that, I went out an got a walker.  I use it for when I’m out long days.  For short walks I don’t use it, or when I go to the gym. Yet, I did have a “I don’t need” it moment, discussion, with my wife, Carrie.  The thing was, is, I have always been independent in finding new ways to get from A to B, I enjoy walking new routes and seeing new things.  Yet, with a walker I need to plan ahead, avoid different routes, and so forth. I realize that this is a silly thing to worry about now!  I took White Lightning to work and it worked out just fine!

Other sidebar, I’ve spent 2o years with a white cane, and being able to part a sea of people with a few taps, but with the walker, I don’t have that ability.  And people look at me differently.

I’ve also noticed my keyboarding skills have deteriorated a bit.

This is thought provoking and helpful to me!

There are times when I feel that I need to work, to help support my family.  Then I either bang my head or fall or do a silly pinwheel off the bus, out a door or just standing there.  How can I work with that trippy mannerisms?

Probably the best way for me to sustain work is to get a job using a computer, and doing what I do best, typing.  Blogging comes to mind.

 

I’m putting time limits on my blog entries to get them done quicker.

Later!

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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.