Day 2 and an inch...

This is my notebook filled with the protocol for the study the next 8 months. Each patient has their own, which is about 7 inches thick. Not being a detailed person, this kind of thing freaks me out. Thankfully, this is for the team to fill out. I just take the pills. And I got confused by the that. "Is it kit #4 bottle #1 that I need? or is it kit #1 bottle #2?!!" Oh boy- I may be a chain smoke after this is all said and done.

We finally arrived at our hotel in Tampa about 10:00 Sunday night. TGIFridays was attached to the hotel for people like us without a car. After an entire day without eating or drinking, it was a welcomed meal in our empty stomachs. I slept maybe an hour (okay, it felt like an hour) and we hopped on the shuttle to the clinic at USF. It's HUGE. So big that they transported us in a golf cart when I needed to go to the lab for blood drawn. (Delsie was a champ!)

The clinic was 4 hours of a battery of questions from subtracting the number 7 starting with random numbers. Um, math is not my strong point. (just ask my Algebra teacher in 8th grade!) After being completely humiliated and feeling dumber than a bed of rocks, I had to perform a series of mouth exercises and speak certain words timed as they gathered a baseline.



I then met Dr. "Z"-the one who is writing this study and jumping through all the red tape. Not only do I love her for that but I just want to be her friend. And there are not many neurologists that I would say that about. (no offense if you happen to be a neurologist) She spent an hour with me - her bed side manners are to die for- she is phenomenal. Tests were comprised of rubbing my heel up and down my shin (that was about as good as my math skills), touching my finger to my nose and then her finger tip and moving my toes and fingers up and down. She wanted to see me walk and asked if I used a walker. I pointed at Delsie and replied, "you're looking at her." She was kind enough not to say, "I'd like to see this" but she didn't need to as her face said it all. After walking 25 feet down the hallway with D, she admitted her disbelief and recognized how well Delsie did (slippery floor and all) That's my girl!!


They filled out an inch of paper work on this visit-only six more inches to go! I have taken 2 pills - Chantix or sugar pill, who knows?- and at this point, I don't really care. I am so humbled and honored to play a part in what may be a treatment or cure for FA. All because a man with ataxia wanted to stop smoking, noticed improvements, told Dr. Z, she listened and did something about it. So now, 'lil ole me, with a dog and big hair may help eliminate for someone else the losses that accompany FA. What a tremendous gain. What a gift I have been given in this journey.