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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.

 

Uncle Steve Chimes In

 

Kyle has invited me to be a guest blogger . Hey thanks Kyle.

I came to this ride with no expectations, because I’d never participated in a road ride of this sort. Well it’s turning out to be a great experience. Once you get used to the cars flyin by, the riding becomes a lot of fun.
The best part of this trip is the fact we I mean I really don’t have to do anything , but ride all day and eat a lot of food.
Kyle doesn’t get to relax near as much. He is constantly preparing for the next reception, or answering calls and e-mails from well wishers.
The amazing thing I see happening is that because of this ride Kyle is becoming a source of hope for many ataxia sufferers and their families. When seen first hand how F.A. , or other Ataxia, affects the body you can understand how many people would just give up and let it run its course. As Diane would say “that aint happenin with the Bryant family." To see Kyle, Mike, and Diane give so much to make this ride, for Ataxia research, a success is truly VERY COOL.
On the lighter side……. I want to give a tip of the bike helmet to the crew @ Tour of Nevada City bike shop. They donated a large quantity of a product called “chamois butter”. Two packets of this stuff in your bike shorts each morning and it’s smooth sailin all day long.
Hi to all the folks @ Turner Mtn. I’ve decided to stay for the whole ride so I won’t be back in Libby till the end of March. Save me a few lines of the good stuff.
Also hi to the wed. nite Mtn. bikers. I’m gettin into ridin shape early this year. So lets do something really hard on our first ride.
Last, but most , hi to Mom, Carson, Aren, Ashley, Mike and Kasen ,who is almost 8 mos old. as of this blog. Take care, love you guys.

ONWARD TO MEMPHIS THIS RIDE RULES

slb

 

 

 

 

 

 

 

 

The last few miles in Texas

 

I have not been able to write very frequently lately because there is so much going on. Since Feb 25 we have been traveling with 8 people, 2 rvs, and a full size van. We have 4 riders and this morning we picked up one more for about 15 miles.

Since San Antonio (feb 24, 25) we have seen a little of everything. The first day we rode on a narrow highway with no shoulder and a very rough surface, not much traffic which was the saving grace. The next day we started in Bastrop, TX and rode through two parks for 18 miles off the beaten path. We encountered some steep hills in the parks that I could not handle with one leg so Dad or uncle Steve had to jump off and push for a bit. Back on the highway we had another stretch of no shoulder and ended up in La Grange, TX that night. The next day (Feb 27) was full of more hills and shoulderless travel. In the middle of nowhere among grassy grazing land, we came across a guy on a bike heading the other direction. He pulled over to talk and we saw that he had packs on the front and back of his bike, it looked like he was on quite a journey himself. He had started in Ft. Lauderdale, FL and was headed to San Diego. Very nice guy, his name was Dave (not surprising as we have met a total of 9 Daves on this trip so far).

You can read about his journey at http://palmerlandtrust.org/Daves%20Ride/index.html.

That night we stayed in a tiny RV park in Navasota, TX. We circled the wagons to avoid the wind. Wally fired up the bar b q for some incredible barbq chicked and we all sat around and enjoyed the incredibly nice weather.



Side Note:I can not say enough for our support team on this trip. Wally, Mary and Mom have worked tirelessly to find us places to stay, drive us around, and cook for us among many other things. Its crazy to move camp every single day, I don 't recommend it for the leisurely traveler. This trip would not be going as well as it is without this team.

The following day was a short one, 32 miles and we ended up in Conroe, TX just North of Houston.

The Albert B. Alkek Institute of Biosciences and Technology

On March 1 we took a side trip to IBT in Houston where we met a research team who focuses on Friedreich’s Ataxia and other triplet repeat (GAAGAAGAAGAA) diseases. First we met Marek Napierala and Albino Bacolla. Marek and Albino took us on a tour of their lab and tried to explain what they are doing. They did a very good job translating between Science Speak and Lame-o Language.

Marek

As I understand it:
DNA is a sequence of codes that tells the body how to make the proteins and other stuff that we need. Messenger RNA decodes the DNA and reads the code. Friedreich’s Ataxia is caused by a long repeat at a certain point in the DNA, the repeat is GAAGAAGAAGAA. If there are too many repeats, the messenger RNA gets confused and does not make the right ingredients for normal operations. This confusion results in a lowered level of the Frataxin protein in people like me. A lack of Frataxin screws with Iron levels in the blood and causes me to spill my Martini and stumble down stairs.

So Marek had an idea a few years ago, he proposed that if they could shorten the number of GAA repeats, they might be able to increase the amount of Frataxin that is produced. This idea is being investigated as a collaboration between this team and two other research teams including the Lab of Joel Gottesfeld who we met at Scripps in San Diego. Marek, Albino please feel free to leave comments to correct me where I failed to get my facts straight.

Side note: That day Marek got word that he would be receiving a generous grant from the Friedreich’s Ataxia Research Alliance. He also told us that he recently received a grant from the National Ataxia Foundation. These two grants will fund his projects for the next two years! Also, Marek did not toot his own horn but we found out that he was named Young Investigator of the Year by NAF.

We also met Dr. Bob Wells who started this research institute and is a huge force in the fight against triplet repeat diseases. Bob gave us a brief history of the institute and a signed copy of his book Genetic Instabilities and Neurological Diseases. He assured us that he has the best and brightest working on this problem. Dr. Wells took us to a very nice dinner where I had the best enchilada ever.


Thanks Marek, Albino, and Dr. Wells, we had a great time. We are amazed at what you are doing. Good luck, we are rooting for you!


Yesterday: March 2, 2007

Yesterday at IBT in Houston we met Angela Cloud. Angela’s husband has a type of Ataxia called Spinal Cerebellar Ataxia 1 (SCA1). His family has been devastated by this disease. 2 of his siblings have it and 4 of his nieces and nephews have it. Angela is very interested in finding out all that she can about the disease and she loves to support others as she is one of the lead support group leaders in the area for NAF. Angela is also a cyclist so she met us in Conroe this morning for a ride before she had to be at work. She drove an hour and a half to be with us and rescheduled her appointments so she could ride a bit longer. She rode with us through hilly Conroe for about 12 miles before she had to go.


As we left Conroe, the hills disappeared and we started picking up speed, we hit 20 mph and held that speed, or near it for almost the entire day. Except for a couple flats and a narrow shoulder, we had a stellar day traveling 70 miles.

The Locals

We are getting into the flat bayou lands. We passed several marshes today and we have started to encounter some of the construction being done to rebuild from the hurricanes. It is hard to find a spot at an RV park because many of the spots are being occupied full time by construction workers.

Today: March 3, 2007

Started in the thriving metropolis of Batson, TX where we left off yesterday. We traveled 30 miles on rough road with no shoulder and stopped for lunch in Silsbee. Though we did not realize it at the time, we were all thinking the same thing: "We pushed a bit too hard yesterday, I am not sure if I can go any further today." However nobody said anything so we continued on. Outside of Silsbee, the shoulder smoothed out and was much roomier. After 40 miles our path took us to the north into the wind and a gradual incline. These two factors slowed us down to about 8-10 mph. Again we all thought "should we call for the sag" but nobody said a word. At 50 miles we were 10 miles away from our destination and at this point we could not throw in the towel, so we struggled through the last stretch and the burning muscles turned into verbal expletives which I will not repeat. During the last 5 miles or so David led the pack and I drafted behind him. This was the first time I had ridden behind a trike and he provided a great draft, I avoided the headwind and saved my legs, thanks David.

It was a struggle, but we made it. Today was officially the most exhausting day so far.

Tomorrow we will finally cross the Louisiana border! We have been in Texas for way too long and I am ready for a new state. We plan to have a nice camp fire and burn all of our Texas maps.

Additional Thoughts:

I am lucky enough to have great support from my entire family. My Uncle Steve is here with us for a while and he is actually one of my inspirations for this trip. He has an incredible amount of drive for fitness and pushing his body to the limits. A few years ago his knee stopped working. An X-ray told him that it was worn out and he needed a new one. This was going to be a setback for someone who loves to hike, fish, hunt, mountain bike and who downhill skis at least 50 days a year. However it was inevitable so he went ahead and had his knee replaced. Much pain and physical therapy later he found himself back on his mountain bike riding with a small group of friends in the middle of Nowhere, Montana. Somehow he managed to fall off his bike resulting in a compound fracture of his femur in the same leg that has the fake knee, ouch. So that sent him back to the hospital for a few more metal rods and lots of physical therapy. Years later, his knee will still only bend to about 80 degrees so he had to chop the crank on the left side of his bike so that he can get his crank all the way around (this is where I got the idea to shorten my crank). His drive to do crazy stuff and push himself to the limits remains into his late 50s. He still pushes the young guys on his back country ski trips and it is hard for me not to push myself to the limit when he is riding behind me humming and singing.

 

 

 

 

 

 

 

 

Busy, busy, busy

 

Tomorrow we are going to visit the Texas A&M medical center in Houston. We will meet a research team and hopefully have some press coverage. Should be fun. I'll tell you about it afterward.

Just a taste:


Another flat...

 

 

 

 

 

 

 

New Teammates

 

Last friday was cloudy windy and hilly. We rode about twenty miles and called it a day. It was hard to push ourselves that day because we had not had a full rest day in about ten days and we had one coming the next day.
Taking a rest on the side of the road:


The next day we visited a bike shop and toured San Antonio. We saw the Alamo and found out why "Texans are so damn proud" (as some old guy told me).

Nice hair.

And we had dinner at the river walk which is probably the sweetest downtown area ever. This picture was taken from our restaurant table:


That night we picked up Uncle Steve at the airport who will be riding with us for an undetermined amount of time.

The next morning we met Dave and David Henry. David has ridden with us for the past two days and will be with us until next week. David is a fellow Ataxian. David does not know what kind of Ataxia he has, which is not uncommon. There are many different kinds of Ataxia and David was tested for about eight of the more common kinds including Friedreich's, the tests came out negative. David has all the signs of Ataxia and has been diagnosed with Ataxia but does not have a blood test to tell him exactly what type.
David kicks my one legged butt on the hills but I can take him in the flats.

The dream team:


The past two days have been great. There is some new energy in our day. The trip is getting long and there are new aches and pains every day but we are moving right along with the energy of friends and family.

Alright, check this out. My uncle has been wearing this little red dew rag so his head doesnt get burned:

Who does he look like...think:

Yeah, hillarious.

 

 

 

 

 

 

 

Yesterday we took off from Ozona Texas

 

2/20/07

Yesterday we took off from Ozona Texas at about 830am. At 1230 we reached Sonora and decided to take a half day off to visit the Sonora Caverns.

We toured the caverns in the afternoon (super sweet) and had time to have a beer and some peanut butter fudge before dinner and bedtime…what a life.

In the morning we again started out at 830am and we got about 2 miles in before my chain fell apart…literally, in mid stroke it just came apart. So we pulled over and upon further investigation we found that the chain came apart at the master link so as soon after a bit of fiddling we snapped it together and we were on our way.


This section involved many rolling hills meaning that we had many slow climbs followed by some steep downhills. The shoulder was like butter all day. Seriously, it was like riding on a basketball court. So the climbs were slow but there was a nice payoff each time. We3 recorded a top speed of 36 mph today, the fastest so far. When I get to that speed, I start to get a bit nervous because any quick move can flip the trike (see previous post called “Road Rash”).

At mile 40 Dad got a flat. We were going down a hill at about 30 mph and he hit a rock. The tube pinched inside his tire and ripped. I was rixding in front and did not notice that he had stopped until I came upon an offramp. Usually at an offramp, Dad yells “CLEAR” which means it is safe to cross. This time I yelled “CLEAR?” and did not hear a response so I looked back and noticed that I was riding solo. I circled back and saw that he was about a half mile back on the side of the road fixing a flat. I waited there, it was getting warm so I sstripped some layers and rode the rest of the day in shorts and my jersey, beautiful weather today.

We finished the last 20 miles in about an hour and a half. Flat, tailwind and a shoulder like butter, like butta.

That night we listened to Wally perform some prank calls on his new toy and we had a great spaghetti dinner prepared by Mary.





2/22/07

It is 8am here in Kerrville, Texas. I thought I would post right now before we get on the road because the internet access is good and it might not be tonight...

Yesterday was quite a grind...My right leg is getting pretty burly and my left leg is still scrawny, but I am managing with no pain, and little discomfort...at this point.

We started In Junction, TX and the shoulder was pretty bad. Immediately we started a steep 5 mile climb out of the river valley that we stayed in the night before. WShen we reached the top of the climb there was a rest stop and we stopped to rest and stretch (the climb took about an hour and a half, 3.5 mph most of the time). Chilling at the rest stop, we were approached by a friendly trucker who asked me if I would be in a picture for his website. I agreed and he took a picture of me in front of his truck and he said that he would add a chain that made it look like I was pulling it.



On the road again, the shoulder was still crap, it was getting a little warmer now and we noticed some small rocks sticking to our tires from the melting tar on the shoulder. We were riding through a trough of tar and gravel. As the day went on, the sun became hotter, the tar softer. The hills continued and as we were going downhill, we could only go half speed because of the tar trough.

This picture was taken before the tires were COMPLETELY COVERED, but you get the idea.
By the end of the day, our tires were covered in Tar and small rocks. The rocks were sticking to our tar wheels and fling into the air and into the moving parts on our bikes, a bit concerning but we made it. It was a slow grind but we reached our destination the Buckhorn RV resort, where the motorhomes are twice as valuable as the homes in the area and the people are three times as snooty, Dad calls it the Buttcorn.

We have finally reached civilization once again. Trees, water, buildings, people. Its a little overwhelming. We crossed a river that actually had water in it so we had to stop to take a picture:


Dad is getting antsy so we had better get on the road...

Calling for reader participation:

I am loving all of the comments and I am you are too. However, I know there are a lot of you that are not participating…I want to hear from you. If you have been following along since the beginning or if you are reading for the first time today, I want you to chime in with your name and where you are from and (more if you want). I want to hear from Sacramento, San Diego, San Francisco, San Luis Obispo, Oroville, Castro Valley, Phoenix, Tempe, Midland, Van Horn, Ft. Stockton, Austin, Philly, Montana, Italy, Ireland, Scotland, France, Sweden, Canada…I think I am starting to sound like Howard Dean, I’ll stop.

Consider this your subscription fee. Take five minutes and leave a comment. Click the button at the bottom of the post that says “comments.” You might have to create an account but whatever, do it!

 

 

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