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!