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rideATAXIA Blog

In January 2007, rideAtaxia was born when Kyle Bryant and his father began their 2,500 mile, 60 day cycling journey from San Diego to Memphis, TN to raise awareness and funds for FA research. Now functioning as a program of the Friedreich’s Ataxia Research Alliance (FARA), rideATAXIA offers single day, challenging and family fun bike rides at locations all across the USA. From firsthand accounts of Kyle’s inaugural journey to the most recent news about our annual bike rides, the evolution of rideAtaxia is chronicled in this blog.

 

Getting Closer To Go-Time

Hi there, its been a while. I am back on the trike again. During the past few weeks I have not been riding. I have been resting the knee and trying to strengthen my IT Band. I have been attending a Yoga class which has been pretty intense. It is HOT Yoga; they keep the room at 105 degrees and it is a 90 minute workout. It’s a total cleansing while twisting into crazy positions and strengthening core muscles. I think it has helped with the flexibility and strength in my knees.

Last week I paid a visit to the UCDavis Sports Performance Lab. At the lab, we set up my trike on my new stationary trainer. They had me ride and we made some adjustments to the trike and to my cycling cleats. I rode some more and we made some more adjustments. Dr. Cosca made some observations and some helpful suggestions. He said that we want to try to fix the knee pain mechanically if possible, meaning by adjusting the trike and the way I pedal. However if the adjustments do not do the trick we can always do a shot of cortisone to get me to Memphis. The visit with Dr. Cosca has put me at ease because he assured me that we will take care of this knee thing. This appointment was set up by Kent Mulkey of Team Donate Life. I really appreciate the opportunity to talk with experienced Doctors and Engineers. Thank you to Kent, Dr. Cosca, and Judd.

So now it is Christmas break and I have plenty of time to make sure I can make it to Memphis with my stock set of legs and knees. This morning, Dad and I went on a nice and easy ride near my new home in East Sacramento. The ride was about 12 miles and it took us over an hour but there was no pain and we came back in one piece…victory! We survived to ride another day.

I was very concerned about my knee for a while but let me assure you that I am 100% committed to completing this ride!

Another exciting development is that my promotional DVD is almost finished. We filmed this piece about a month ago and it is finally coming together, should be completed this week (Ihave been saying that for the past two weeks but I really mean it this time). Hopefully the video will be available for viewing on my website, I’ll let you know.

One last thing…WE ARE APROACHING OUR FUNDRAISING GOAL! The goal is $30,000 and we are at about $25,000 thanks to generous donations by many people, many of whom I have never met before, very encouraging! One huge donation was made by Sierra Self Insurance Services. Their donation of $5,000 will keep the momentum going and will help us get over the hump. A huge THANK YOU to Mike Krill, Gail Blagg and Mike Bryant (Dad) of Sierra Self Insurance Services. We are very close, keep the donations coming!

 

 

Freezing

 

Rode to work with Andy this morning...it was 31 degrees. Is that...um...yes, thats just below freezing. It was cold! I had two layers on the bottom, 4 layers on the top, 2 pairs of gloves,a beanie for my ears, and booties over my cycling shoes, I looked pretty ridiculous...sorry, no pictures.

I have a feeling it will be much more cold and wet during the ride so I figure I need better gloves and some wind breaker/rain pants. Good thing I am finding this out now, soon it will be too late!

We did not ride home (took regional transit) because my knee was acting up again. However, I think I am making some progress because my knee is taking me a lot farther than it did a few weeks ago. Just gotta take it slow and easy as I train the knee for long rides again...

 

 

Back in the saddle again

 

For weeks I was plagued by a knee pain that may be the beginning stages of tendinitis, I was very aprehensive about getting back on the bike and aggravating the knee again. However, I took some steps to fix the problem (physical therapy, new pedals and shoes, a few adjustments to the trike, and lots of stretching).


This weekend I got in the saddle for the first time in about a month and it went very well. I rode about 5 miles on thursday and about 12 on Saturday. I took it slow and I think I am a little hyper sensitive about knee pain right now but better safe than sorry, right?

So, now that I am back, I am going to start ramping up the training again. I am also going to try to pay more attention to nutrition and hydration from now on. I am giving up beer (and alcohol) until I get to Memphis, it dehydrates like none other. Party in Memphis March 22, 2007. See ya there!

 

 

 

 

ACARM

 

The All California Ataxia Research Meeting was killer! We heard about cutting edge Ataxia research from some of the top minds in the world including the always wonderful Susan Perlman. Dr. Perlman is great, she sees hundreds of patients and still takes the time to come over and ask me how my knee is doing.

We heard from a Scientist who works with Joel Gottesfeld at Scripps. These guys may be on their way to figuring out a way to reverse the effects of Friedreich's Ataxia and we can help them by donating our dollars to organizations like FARA (Friedreich's Ataxia Research Alliance) and NAF (National Ataxia Foundation) who fund this research.

All of these scientists speak a foreign language. A language of fatty acids, messenger RNA, HDAC inhibitors, GAA repeats and polyglutamine phosphotase. They often try to make analogies; today, one of the presenters, a brilliant scientist Dr. Guy Miller was explaining the role of COQ10 and he told a story about Lance Armstrong, toasters, and tetherball...what the heck? Most of us have no idea what these guys and gals are talking about but all of us are greatful that they know what they are talking about and we are amazed at their understanding of the processes that take place in the human body.

One of the great people I met for the first time is a guy named Mike Parent who is the Executive Director of NAF. Mike is very supportive of my ride and with his help and the support of NAF, we will try to make this thing huge.

Paul, Me, and Mike

Additionally and maybe more importantly, I saw some old friends including Phillip Bennett and his family, Paul and Brianne Konantz (if thats how you spell it) and Norm Simpson (who flew in from the east coast). I also met a few people that I have been trading emails with for a while, Vikki and John Hartigan and Dori McCandless, these folks are from the Sacramento area and I hope to get together with them in the future.

The All California meeting was great and I can't wait until the National Conference in Memphis!

PS-I promise the next post will be about cycling, I plan to get on the trike this week...

 

 

Slacker

 

Hey Folks,

I have been a slacker lately with the blog, so let me try to play catch-up.

Things have been really crazy since my article came out in the Sacramento bee. I have been receiving non-stop emails of support, thanks so much, it means a lot to me. I have been hearing from many fellow Ataxians or relatives of Ataxians in my area, it is very nice to share experiences and struggles.

I have also been a slacker on the cycling side of life...The knee injury during my ride to San Francisco slowed me down for a bit, however hopefully I have fixed the problem with a trip to a Physical Therapist at a place called Kinetctions here in town, and a visit to the Tour of Nevada City bike shop where they fitted me to my trike and changed quite a few things that could have been contributing to my knee pain. Thank you so much to the Tour of Nevada City bike shop, they are true experts who spend the time to get everything right.

Another thing that distracted me from riding was a trip to Philadelphia where I visited my good friend Dynah who I met at the NAF conference last year in Boston. We had a great time at a couple of museums and a Sixers game and a night out in Philly...


On the awareness and fundraising front, there is a lot going on as well. After the article came out in the Bee, there was about $800 contributed on my website in a single day. Also after the article I got a random call from a guy named Neil who is part of a group of cyclists called Team Donate Life. I ended up going to one of their meetings, they asked me to tell my story and they were very supportive, they offered to post my story on their website and to raise a few dollars for me as well. On top of that, I met some really great people and I will definitely be back to see what is in the future for Team Donate Life. Please visit their website here.
Another project that is brewing is a benefit concert at a local venue with a local singer...details to come.
Yet another great awareness promotion was a visit with the Rotary Club in Nevada City. Once again I told my story and received nothing but support, thank you Rotary!

As you can see there are quite a few things distracting me from riding. Tomorrow I am filming a short video for the promotion of my ride with a very talented producer from my work, Matt Pegler and his lovely assistant Diane Nascimento. After that I am heading to the bay area for the All California Ataxia Research Meeting. These meetings are great because it is an opportunity to meet lots of rad people and to hear about the latest advancements in Ataxia research!

Starting next week I am going to ramp up the training once again being careful not to aggrivate that knee or any other joints...See you on the road!

 

 

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