International Ataxia Awareness Day

International Ataxia Awareness Day

"The "International Ataxia Awareness Day" is an international effort from ataxia organizations around the world to dedicate September 25th as International Ataxia Awareness Day. Each participating country, state, or individual may have a specific plan for this event. The goal of IAAD is for every individual to participate in some activity, creating awareness about ataxia. You could share something you know about ataxia with one other person who has never heard of it, educate a group of people by speaking at a school or civic group, contact the media, or raise financial support."

Not many people know about Ataxia including myself before I was diagnosed with CA.  I only recently found out about the awareness campaign and wish I could have done more but sharing this is a start.  The more people are aware of the problem the more effort can go toward ending it.  Knowledge is the foundation of support.  Thanks!

Without Order

“I don’t know what you’ve been drinking but…”

They don’t know any better.

They didn’t mean anything by it.

Wait, why would you say something like that and just walk away? 

Why wouldn’t you wait for a response?

I got to go.

            I wasn’t drinking.  I don’t drink.  As of the summer 2013 I was diagnosed with cerebellar ataxia.  The long and short of it is that the cerebrum, the part of the brain that controls movement, is deteriorating causing difficulty with motor functions.  In my case it is apparently caused by a mutated gene.  Basically my motor skills have been decreasing since roughly the end of high school.  For me that was 1999.  The changes have been slow and looking back through the years I can see were things changed.  I just learned how to adapt what I was doing so I could function in the best way possible for me.

So Why Blog?

            This is rare, and it sucks, and it’s confusing, and it’s maddening, but at the same time it opens your mind to looking at things in a different light.  I thought, if for nothing else, maybe someone else with this situation will find this blog, comment, engage in conversation, vent, whatever.  I need an outlet for what I’m feeling and this is one of the ways I’m going to do it.  I count myself as extremely blessed.  God has given me the most wonderful wife and family and friends.  Even with all these things, I still feel angry, sad, confused, frustrated, tired, all that at times.  I don’t think there’s anything wrong with having those feelings but I’d like to avoid them as much as possible.  When I can’t avoid them, I’ll share them.  I’m also going to share all the good stuff. 

How’s This Going to Work

            I’m going to share how I’m feeling, what’s going on, and maybe some suggestions or what’s working for me.  This junk is rare, so I realize there won’t be many readers, but I’m going to post regardless.  My hope is that someone or a few someone’s will find this blog and it will help them like I think it will help me.  Depending on what statistics you read this junk affects about .05% of the population of the earth.  So let’s get together and let’s talk.

            I don’t plan on posting daily but we’ll see.  I’ll definitely be checking in on it multiple times each day.

Thanks

            Thank you in advance for anyone who reads or participates with this endeavor.