I don’t remember what I was doing at this time one year ago, but I remember what I was feeling.  My heart dropping out of my chest.  I wanted to vomit.   I felt panicked.  I feared the unknown.  I feared the known.

One year ago, I found out that I had ataxia (SCA1), the disease that stripped my mother slowly of all her faculties and ultimately claimed her life, and the idea of following her down that path scared me more than anything has scared me ever.  72 hours later I had shared my diagnosis with my husband, then my sister and my dad.  Then all of you.  I promised that I would hit the ground running (or at least speed walking) and do everything in my power to extend my life span.

Over the past year I have done nearly everything I set out to accomplish.  In June, I adopted the Ataxia Diet, which I continue to follow religiously.  Since July I have been going to physical therapy every week and I incorporate additional exercise when I can.  I also take daily vitamins.  As a result, my SARA score went down at my second testing in November from a 6.5 to a 6.  I have also lost 30 pounds, have more energy, and seen noticeable improvement in my balance and coordination.  I remind myself all of the time that these changes are a lifestyle.  I am choosing a healthy life.  Over the next year, I hope to incorporate speech therapy and occupational therapy into the regimen and to continue improving my balance through chiropractic care, which I began a few weeks ago.

In March, Corby and I went to the National Ataxia Foundation annual conference in San Antonio.  We learned a lot at the conference and met some very nice people.  Before the conference was over, I had already ordered a trampoline, balance board and beam to improve my at-home balance work.  We received positive news about the state of research regarding the various hereditary ataxias, including SCA1, and the likelihood of discovering a cure in my lifetime.  My goal continues to be keeping my SARA score as low as possible until that happens.

To that end, I will begin my first clinical trial on May 22.  I am participating in the Biohaven clinical trial for trigriluzole, a drug that just today received fast track status from the FDA, which means it could quickly move into the marketplace if these trials are successful.  I will be in a blind study for eight weeks where I have 50/50 chance of being assigned trigriluzole or a placebo.  After the eight weeks, I will have the opportunity to continue on-drug for 42 weeks.  Trigriluzole is the first drug of its kind in the American drug market to target ataxia symptoms.  If successful, I should experience another reduction in my SARA score after I start the trial.  I’ll drink (my homemade sparkling cucumber-basil soda) to that!

While slowing progression is important, I cannot forget the end-game here.  We must get to a cure.  At the NAF annual conference, the importance of fundraising was emphasized.  Money buys research, research buys cures.  Under this current Congress and President, the importance of private fundraising to support ataxia research is more important than ever.  This year I will begin doing my part to help fund that cure.  More on that later.

Over the past few weeks, I have not had much opportunity to be introspective.  I was hoping I would have plenty of time to think about what I wanted to write and then to put together an anniversary blog post that was worth the six month wait.  But life had other plans.  The one thing I keep hearing over and over in my head are the lyrics to Seasons of Love from Rent.  I am not a huge fan of musicals, but the words of that song are speaking to me now:

Five hundred twenty-five thousand
Six hundred minutes
Five hundred twenty-five thousand
Moments so dear
Five hundred twenty-five thousand
Six hundred minutes
How do you measure – measure a year?
In daylights – in sunsets
In midnights – in cups of coffee
In inches – in miles
In laughter – in strife

In – five hundred twenty-five thousand
Six hundred minutes
How do you measure
A year in the life

This past year was full of triumphs and set backs, emotional highs and emotional lows.  It would be easy to fixate on the bad things that happened, but I have never been one to channel myself toward the negative.  Rather, when I look back at the last year I see these moments, and so many more:

Calamigos Ranch with my boys
watching Kate pinch run the bases in softball
wearing cow hats in the Irish countryside
Laila meeting Beans
seeing Sean one last time
wearing cat pants to a funeral
the Tragically Hip’s final show
Todd going “full trans” at the Rainbow
checking another NFL stadium off the list
70 degree weather in NY in October
saying goodbye to Todd Sr.
Derek in the trunk of a car
Hands family karaoke at Sidelines
Dorothy in her Nasty Woman shirt
meowing with Rev
TRADITIONAL. KOREAN. MASSAGE.
remembering Bob Ryan with a green-themed bar crawl for my birthday
first NFL game as a family
tackling another feast of seven fishes for Christmas
meeting Mr. Fu and his wives
roses with my girls including virtual Brittany
marching with Julia, Liz, Genevieve and Gazelle in DC
a swing for the yard from my love
tenth annual Oscars potluck
mashing it up with Sarah and Marc
pokemon with Grace Dore (and Harley and Tristan) (and Tony)
my Robyn and her annual St. Pats visit
Beans and Rufus in the sierras
Game of Thrones Concert Experience
seeing the space shuttle with Johnny and Jake
Luis Miguel “orden de arresto” and the media spectacle
riding the roller coaster in Vegas with my sister

Moments like these remind me what it is I am fighting for: the time to make more memories.  So bring on the clinical trial, because I ain’t going anywhere soon (other than to bed, because it is frickin late).