Today was my six month checkup. 

Before I get to how it went, first a few corrections are needed. 1) For months I’ve thought my original SARA score was 5. It was actually 6.5.  2) I also thought the natural progression was 3-4 points per year. I am sure I read that somewhere, but it could have pertained to a different form of SCA. For SCA1, according to my doctor, it’s actually only 1-2 points per year. That means if I were to let the disease naturally progress I could expect my 6.5 from May to be a 7 or 7.5 by November. 

These baseline understandings are important since they put my results in perspective. 

Over the past six months I’ve changed my diet, started taking vitamin supplements, gone to physical therapy twice a week, and increased my overall activity. I’ve done all of this with the goal of reducing or, at the very least, maintaining my SARA score. It’s been a bitch and I’ve struggled at times, but I’ve constantly reminded myself that the goal of health is worth all of the work.

So, did it pay off?

It did.

I scored a 6.  

I’ll be honest, I was underwhelmed at first. I’ve worked so hard. I was really hoping for a decrease of at least a point. But I have had a few hours to think about it more and I realize I was being too hard on myself. 

It’s incredibly hard to swim against the current, but I did.  

The other big news is we are entering clinical trial territory.  Beginning in December, I will participate in a clinical trial for a promising drug that may eliminate or greatly reduce my largest balance issues, helping to further reverse my SARA score.  My doctor is also hopeful that an rDNA clinical trial will be available by 2018. This is huge. Huge. A cure could be here before I ever need a cane or walker. 

Thursday is Thanksgiving (as well as my birthday). This year has been so awful in so many ways. I can’t dwell on the bad or else I’d get swallowed into a sea of sadness. Instead, I choose to be thankful. I’m alive and more well than I was six months ago. I see the path to a cure. It’s attainable. I must shift my sails and forge ahead. 

So pass the drugs. It’s time to crush it.