In journalism, this what they call burying the lead.  Instead of leading with the important piece of information, you hide it behind something less captivating.  For example, if the President of the United States had a press conference on infrastructure and he said bat shit crazy things at the press conference, you would not lead by informing the reader about the President’s remarks on infrastructure.  You would lead by summarizing the bat shit crazy off-script support for neo-Nazis and white supremacists (not all of whom are bad hombres) by the President (in 2017) (in America).  [It probably should be noted for those of you reading this in other countries that many, many Americans, myself among them, are embarrassed by and ashamed of literally everything that spews from Trump’s mouth.  So, on behalf of America, I apologize.  He is wretched and we hate him too.]

I am burying the lead here, because if I lead with the fact that I scored a four, you might not read the rest of what I plan to write, and I really really hope you will read the rest.

Yes, today I scored a four.  It is a big deal.  More on that later.

When I was diagnosed, the first thing I remember thinking was that life as I knew it was over.  Everything would change.  My ability to walk, which was already compromised, would worsen.  My speech and my other fine motor skills would deteriorate.  I would need help bathing and eating and doing everything else that we generally take for granted.  Watching my mom go through it, I knew what the future held, and it was a big steaming awful pile of refuse.  I am, and have always been, a hopeful, positive person.  But I am also a realist, and this is/was the reality.

It is a hard pill to swallow and I did not want to swallow it (swallowing, notably, is also compromised by ataxia), so I started reading everything I could on ataxia.  I learned that I could modify my diet and that I could incorporate physical therapy.  Sure, neither would cure the disease, but they could provide more time.  Both things, if committed to, could help push back the clock.

In the world of ataxia, the clock is your SARA score.  The higher the score, the less time left on the clock.  After a few months at it, my score had decreased from a 6.5 to a 6.  My score should have gotten worse, but it had gotten better.  I learned that regression was possible.  (To be fair, I have always known that regression is possible.  Just ask anyone who has ever been commanded to “hold the rope!”)

Earlier this year, Corby and I went to the NAF conference in San Antonio.  At the conference, I met another woman with SCA1 who appeared to be around the same SARA number as me.  She said, “I know I can’t get back what I have lost, but I am trying to stay active so I don’t get worse.”  For her and for others I have encountered, the best they appeared able to hope for was that they not get any worse or, at least, slow the “worsening” process.  On the ataxia message boards, I read of similar sentiments.  I also read of people with SCA1 doing nothing to help themselves because their doctors had told them there was no reason to — there was nothing to be gained from physical therapy or a change in diet.

There appears to  be a common misconception in the ataxia community that ataxia cannot be controlled.  Hogwash.  If you commit yourself to the process, you CAN rewind the clock.  What worked for me may not work for you, or to the same degree, but there are elements of this condition that are within our control.  We just need to realize it and do something about it.  How often do we treat our brain like a muscle?  What effort do we exert to improve our brain and train it to work harder?  I never did.  Until now.

Three months ago, I was lucky enough to start the Biohaven drug trial.  The hope is that the drug will help to improve balance and coordination in ataxia patients by some modest amount and then help maintain balance and coordination at that baseline for an extended period.  For the last month, I have been on the drug (the first two months are still a mystery).  I watched my score plummet from an 8 in April to a 5 in June.  Today, as I was going through the skills test, I worried I would under-perform because I had some coffee earlier.  I worried I would be jittery, which would express itself as “sway.”  However, as we went through the test, my doctor remarked at how much I had improved at each element.  Among other things, my doctor noted that for the first time I was able to complete a tightrope walk for a full 10 paces (the SARA test is basically the DUI checkpoint test, so feel free to test yourself at home); however, there was some sway.  She said she would go easy on me with the score.  I told her not to.  At my urging, she agreed to provide me with the “going tough on me” score.  It was a 4.  She said if she did not account for my sway, she would have given me a 3.  Her conclusion was that my coordination is now as good as an unafflicted individual and that if she did not know me, she would not have known I had ataxia.

It is a fucking triumph.

In the 15 months of my journey, I have put YEARS back on the clock as a result of my diet, exercise, physical therapy and a teeny tiny little pill I have to take once a day.  And, given the neuroprotective elements of the Biohaven product, I could remain stable at this level for years to come.

At the NAF conference, we learned that significant steps have been made towards finding a cure and there is near certainty within the medical community that a cure will be found within the next decade.  I strongly believe that there will be a cure before I ever need a wheelchair and I promise that I will continue to do everything I can to keep my score as low as it will go.

As you know, I am also doing, and will continue to do, everything I can to fund research for a cure.  Last month we held our first annual beer mile for the NAF.  The amount of money we raised – and the number of people who gave of themselves to make this a success – was remarkable.  I have already thanked each of you, but here it goes again.  Thanks to you we raised $17,500 for ataxia research.  Doubled, that was $35,000 — one-fifth of the total raised for NAF during its matching campaign — well beyond our modest expectations when we first announced the fundraiser.  Thank you to the most wonderful husband I could ever have asked for, for planning the event and for live streaming his participation in the mile.  Thank you to the other runners – Dan Tirozzi, Ivan Uribe, Patty Walshaw, Pam Houghton, Jeff Granzow, Mike Sandoval and Julia Eldridge.  Thank you to Elle and Tony for making donor gifts.  Thank you to Sharon and Rushika for organizing the high school versus law school challenge.  Thanks to all of the 175+ people who donated, whether it was $10 or $1,000.  We appreciate every single dollar that was given in my name or in memory of my mother.

You should all go give yourselves a high four.  🙂