2009 AAI

The Ataxian Athlete Initiative (AAI) is a program aimed to introduce cycling to Ataxians by funding the purchase of a new trike. This year Ride Ataxia received 6 applications from aspiring Ataxian athletes. Unfortunately our resources limited us to a choice of only one recipient. Our panel found the choice very difficult but in the end we were confident that our selection, Nadia Robertson, fulfills the spirit of the AAI with the willingness to stay active and encourage fellow Ataxians to do the same.



"I don't plan to stop exercising until it becomes physically impossible, which I hope is never...I am already a wheelchair user so hopefully I can inspire Ataxians who are on my same level to stay as active as possible."

Nadia Received her trike in early April and has logged quite a few miles since. She has been reaching out to fellow Ataxian Athletes for advice; keeping us in the loop the whole time:

"My ankles had been rolling in my cycling shoes so I bought some tie-up ankle braces today. I talked to Chris Meyer, a fellow FAer who has a trike, and I guess we're closer progression-wise, so he gave me some adaption tips."

With the help of the 2009 AAI we are positive that Nadia is improving her health and confidence.

The future of the Ataxian Athlete Initiative is very bright. We hope to expand the effort with more funding. This will allow us to fund more athletes encouraging our community of Ataxians to stay active!

Dr. Perlman

“For 20 years all I could do was tell my patients there were no cures, try to treat their symptoms, and fi ll out their disability forms,” she says. “With the development of molecular genetic technologies and the ability to identify responsible genes and understand their proteins, in the last decade we have begun to design treatments aimed at the disease itself. I am very optimistic about what lies ahead.”

Read more here (page 4): Partners in Discovery

Evan's Walk

This weekend I went to a fundraiser in Cincinnati Ohio in celebration of Friedreich's Ataxia Awareness Day. The fundraiser was a 3K walk/run organized by the Luebbe family. Evan Luebbe was diagnosed with FA when he was 8 years old. He is now 12 and has a much older personality. I hung out with Evan and his family this weekend and had a blast.

The event went off without a hitch because of huge support from community volunteers. This was the 5th year of this event and it showed as everything fell into place. Everyone had a great time with carnival games including a dunk tank (in which they could soak their principal), a silent auction, raffle, lunch from Outback Steakhouse, a short presentation about FA, and a magic show!

Initial estimates are that there were more than 200 walkers/runners and the event raised more than $25,000.

Thanks Luebbes, I had a lot of fun. You are truly making a difference!

Back Row: Felicia DeRosa, Greg Luebbe, Tammy Luebbe, Pamela Rasey Front Row: Graham Luebbe, Evan Luebbe, Me

My New Sport

Its late and I need to get to bed but not before I tell you about my rowing experience.

I became interested in rowing after I heard about these two crazy guys who are going to row across the Atlantic in support of Ataxia UK: http://www.rowingtheatlantic.com/. I love this and I hope they know they've got our support!

I was very intrigued by the proposed journey for Ataxia and as I searched around I found many other people who had made the journey. I spent many hours reading about different journeys across the Atlantic and watching YouTube videos about it. One person I ran across was Roz Savage who gave up her desk job to train and row across the Atlantic. Roz is currently in Hawaii after rowing her first leg of the Pacific from California. The second leg of her Pacific row starts in 16 days.

So there are lots of inspiring stories about rowing and I got interested a while ago but just this week I had the opportunity to try it for myself through a class at the Sac State Aquatic Center. The class was 4 days, 2 hours each night.

Monday night we watched a safety video and then took a boat down to the dock to just sit in it and see what it feels like. I sat in the boat and immediately felt like I was going to tip into the water! I was thinking 'There's no way I can do this. Ataxia is going to make me unbalanced and send me into the water as soon as I get away from the dock.' But our instructor, Rudy talked me through how to stay balanced using the oars as leverage on the water. I was still a bit skeptical but I came back the next night.

Tuesday night we each got a boat and we ventured away from the dock to try some things on our own. I was still quite shaky but when I slowed way down, relaxed and thought about what I was doing it went ok until I lost focus (which was quite often). When I was really struggling Rudy walked me through the things I needed to do and it all came together. Much improvement and some fun.

Wednesday night we spent an hour and a half in our boats and I improved a lot but I also struggled quite a bit. It was a little windy that night and I had to keep correcting my course quite often which meant turning the boat sometimes 180 degrees. This proved to be a challenge as I struggled to figure out the right blade position for my oars. At the end of the night I was exhausted but I could not wait to try it again. It seemed like my skills improved each night as I struggled through the rough stuff and enjoyed the good strokes.

Tonight we ventured even farther into the lake. The wind was blowing pretty hard when we showed up and we almost called it off but the wind died down to a reasonable breeze and we gave it a try. I felt so much more comfortable and confident tonight and these feelings translated into some decent rowing strokes. I had a lot of fun tonight and was much less exhausted because I was actually rowing instead of flailing around.

At the beginning of the week I was pretty freaked out and unstable. I was ready to call it a loss on account of ataxia. However I stuck with it and found that it's just a matter of getting out there and seeing what happens. I look forward to more rowing as I try to incorporate it into my fitness routine.

Training For Next Year

After Ride Ataxia 3 (about a month and a half ago) I was sick for 2 weeks straight. At a couple points during that time, I thought it was never going to end. However after two weeks of couch time and some thrilling surfing on my way too basic cable I finally pulled out of it and now I am back to feeling 100%.

During the two ill weeks I did absolutely zero physical activity and my muscles tightened up big time. The muscles holding my knees together were so tight that it was painful to ride. I was a little concerned so I paid a visit to Dirk, my Physical Therapist, who told me that there is no reason to be alarmed, I just needed to get loosened up. So I massaged and stretched the heck out of my legs for two weeks in preparation for the Chico Wildflower ride. The ride was yesterday and there was a strong presence from the Ride Ataxia Cycling Team.
Left to Right: ED, Chris, Becky, Karen, Stephanie, Diane, Mike, Me, John. Not Pictured: Tess, Mark

There were many options for the ride. A century (100 miles), 65 miler, flat 60 miler, flat 30 miler. John was the only brave soul to complete the century (his first century), congratulations John! A few of our group modified the century route to complete about 85 miles, some of us did the flat 60 miler which turned into about 75 after we got lost, hooray! And a couple in our group completed the 30 miler, congratulations ladies!

The weather was fantastic and we all had a great time. We enjoyed a large meal and massages at the end.

Today I was very tight but it could have been much worse. I am headed back to see Dirk to make sure I continue to stay loose!

Reflection

We left Seattle about a week ago and after surviving a terrible fever I have had time to reflect on our Journey. I spoke with a few teammates and the general feeling is that the time spent on the bike was wet, cold and extremely difficult. However everyone came away with a positive experience. Each person challenged him/herself every day and in the end we came together as a team to encourage each other to the finish each day.
I think everyone agrees that this is not something that any of us would have done if we did not have a reason to ride out on a limb for a deserving cause. In fact, at times the travel was quite treacherous:
But despite the horrendous riding conditions we managed to have fun:
And we kept moving toward our goal with purpose. Our purpose was to improve ourselves personally in hopes that we would benefit others at the same time. I am confident that we accomplished these goals as I hear positive feedback from teammates and as I see the research dollars continuing to trickle in. We have already doubled our fundraising goal and the total keeps rising as we passed $220,000.

There were a number of defining moments during this ride, but a particularly significant one came 2 miles before the end on a 21% grade incline. Without a feasible alternate route, cyclists were left with no other choice but to climb this wall of a hill. In a striking parallel to facing the challenges of life with FA, the nearly 70 cyclists dug in and approached the uphill battle with determination and perseverance. Many of the recumbent trikes were unable to gain traction on such a steep incline; so their teammates abandoned their bikes and helped push them up. Other teammates picked up the abandoned bikes and cyclists reported that very few words were exchanged- just recognition of need followed by action.

Morning Show

Hi.

The NAF conference was fantastic as usual and we are headed home now. I will have some thoughts and reflections soon but in the mean time, I will be on a morning show in Portland in the morning. Not sure if you can watch live on the web but check it out: AM North West