Krystal Schulze: Raising Awareness Of Acquired Ataxia

I was diagnosed with Ataxia via a brain tumor at 18, which had been slow growing since my junior high years.  My tumor was a Juvenile Philosophic Astrosytoma which of course led to removal, and boom my Acquired Cerebellar Ataxia (ACA) was born half way through my senior year.  I was told that mine was not progressive but later learned that it was –  20% are – and I won!

I was in high school  and was very athletic, at the time all this went down (I use that phrase a lot cause it was a major robbery!)  Started my 14th year of softball, ran track, cross country and was on drill team.  I was also in co-op, which allowed me to work retail at 2 stores in our Outlet Mall.  I had luckily gotten to experience my junior prom a few months before.  I also cherish that I received my drivers licence 6 months before and I drove my baby silver, a Chevy S10!

Of course, I don’t do any of that anymore except exercise to keep from atrophy.

I have always loved anything to be creative using logic.  When I graduated, in between therapies, I taught myself HTML, Java, Dreamweaver with Dragon, and then Python.  For me, music is always key to keep me focused and productive longer.  When I was 30, I was pregnant with my now 8 year old daughter Alyssa, who is my world!  At that point, I was advised to do almost nothing.  I used that time for an online college because I knew I wanted to fully be involved with my baby.  So I got 2 degree’s (business administration and graphic design)  Of course, everything I’ve mentioned above are certainly my favorite ways to keep me going!  It may sound silly but my daughter gets a kick out of playing cards or jenga with me.  It can be frustrating for sure but those fine motor skills are tested and keeps you from weak joints and atrophy of the hands. 

I also designed and maintained our local support group website in Houston.  It was Greater Houston Area Support.  It was to keep all informed on events, meetings etc.

I have since moved and no one wanted to take over.

My disability has taught me to be kind but don’t take crap from no one!  Be yourself and that will weed out those who do not accept you or let you have or express your feelings or opinions.  I certainly have the open-mindedness to listen to you.  They should also listen to the other side.  We will all have different opinions and ideas, in an unsure world of what we deal with, is it worth it.  We always need to preserve our energy, pick your battles wisely! 

Ataxia Awareness is something very important to me.  I have moderated several Facebook groups.  First was Ataxia Planet, then Our Ataxian Lives and currently branched out trying also help people understand there many ways someone can acquire ataxia at any second.  This group is Acquired Ataxian Survivor Support.

Again my advice, We always need to preserve our energy, pick your battles wisely!