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Bottomless Bookseller

 

Current Location: Blythe, CA (yes, this is where we were yesterday. We are riding on either side of Blythe for a couple of days...its complicated...nevermind)

Today we started out near Ripley, CA which is about 15 miles west of where we are right now. It was a little cool this morning because the sun was reluctant to push through the thin cloud cover. This has not been the case the past couple of days, we have been riding in short sleeves beginning at about 830am and it has been about 75 degrees in the afternoons. Not today, it only reached about 68 this afternoon, too bad for us.

So we biked for about 15 miles and then we reached the trailer in Blythe, CA where we had some lunch, tuna sandwiches (one of my favorites, so easy and tasty). After lunch we crossed the Colorado River into Arizona, there goes one state. We entered the freeway again to start another climb.

- Side note: Some people freak out when we say that we ride on the freeway but let me tell you that the freeway is much more pleasant and safe than the non existent shoulders that we rode on a couple of days ago. So far, the freeways that we have ridden on have had nice, wide, smooth shoulders to lean on... -

We climbed this small mountain range just inside of the Arizona border and I actually enjoyed the climb, just pounded away at about 5-9 mph. I think I enjoyed it because I knew we would get to cruise down the other side. And we did, for about 5 miles with minimal effort we kept a steady 20 mph.

Then we caught sight of a little place called Quartzsite, AZ. This place is the RV capitol of the world. As we came over the grade, we saw an absolute sea of trailers and RVs for as far as we could see. One guy told us that during the off season Quartzsite has about 3,000 residents but during this time of year, there are about 350,000. Another guy told us that there are about a million people there right now. Personally, I think they were both over exaggerating but there were a ridiculous amount of people gathered in this random spot in the middle of the desert. As we came down the off ramp, we could barely get off of the freeway because of the insane traffic. We got onto the main strip (if you wanna call it that) and there was a giant flea market in all directions. It smelled like the county fair, corn dogs and deep fried twinkies. We made our way through the crowd and called Mom who had the sag vehicle waiting at a bookstore called “Reader’s Oasis.” We met there and went inside. There was a large poster of a guy wearing nothing but a small mesh bag on his "package". That was kinda odd…Even more odd, I walked around the corner and there he was. He was wearing a blue fleece jacket, a cowboy hat, some moccasin type boots and a small bag which contained his family jewels. My mother had already met him so she introduced me as her son that is riding across the country. He was very happy to meet me and he was a great guy. We chatted for a bit and he told me that he was envious of me and my adventure. He said that he loved to ride his bike but he has been busy selling books for the past seventeen years…with no pants on. We were about to leave and he told me that I might need some reading material for my journey, he ran inside and brought back a book called “How Many Hills to Hillsboro?” It is a story about a family and their cross country bike ride…Thanks Paul, I will take off my pants before I read.

So if anyone is ever in Quartzsite, AZ please visit Readers Oasis and a very nice gentleman named Paul.

 

 

 

 

 

 

 

 

rideATAXIA: Joy and Misery

 

Today was great, yesterday was an absolute grind.

Yesterday we started out in Quartzsite (fully clothed) and immediately started the 10 mile climb over another small mountain range. Grinding away at 4.5-7 mph, this ten miles took us what seemed like forever. On the other side was a small payoff which was not enough to cover what we just suffered. Then wse got off the freeway onto highway 60... The shoulder was very rough with seems about every 5 feet, not cool! So we bounced along and took a short stop for some gatorade at a small store in Brenda, AZ. Then came another hill. This one sorta snuck up on us...Looking at the road you would think it was flat but don't be fooled, it is slightly uphill, and very bumpy. The hill continued like this and got steeper for about 15 miles, hooray! Toward the top, the shoulder surface turned to smooth asphalt and wse kept grinding away slightly faster. We were looking forward to the payoff on the other side but that wouldnt come for another day. The road was flat for the last ten miles and our legs were aching but we put in 50 miles.
Endless Road:


The next morning we started at about 8 am (about the time you were getting to work) and enjoyed the flatness for about 25 miles. Then we came to the big payoff. A downhill stretch for about 12 miles, all the way to our destination for the night Wickenburg, AZ. We finished up at about 1pm and took a load off...We sat for an hour, sunny, 80 degrees with a cool breeze. Whats the date? Oh yeah, January 29...Great day!
These two pictures provide a decent summary of our afternoon:



- I have noticed that I have a lot more to say about the bad dxays so far, maybe this is something I will have to change.

Bonus Picture:


Mornings on the road.

 

 

 

 

 

 

 

Testing the nerves

Current location: Blythe, CA
Todays Trek: 75 mi (this number is a bit deceiving, details below)
Average speed: 10 mph

Today was a fairly taxing trek.

We started out in El Centro and headed toward Brawley with a good head of steam, the knee was feeling pretty good so we kept a speed of about 17 mph until we came across this billboard. Anyone who knows my brother will get a kick out of this one:


After we passed through Brawley, we hit highway 78 and a slight headwind. The wind was no good. It slowed us down to a crawl, about 10 mph and my knee started screaming. All of this and then the shoulder kept getting smaller and smaller...hooray! So we continued at this snails pace for another 20 miles. All the while, we were being passed by many, many motor homes and trailers. It turned out that this highway headed out to the Imperial Valley Sand Dunes anxd it was friday, the weekend. All of the traffic was weekend warriors going out to the dunes with their motorcycles, quads and cases of beer. As the shoulder shrank, we (Dad and I) had to ride off the pavement when there was a vehicle coming toward us and a trailer passing from behind. This got old and very frustrating quickly. At one point, Dad rode off the road into the sand and fell over into the road, luckily no cars or trailers were coming at the time but it was pretty scarry. The shoulder finally widened when we got to the dunes and we watched people speed around in the sand on motorcycles, quads and other creative vehicles with paddle wheels.


Our sag vehicle (Mom) met us in Glamis at the one small store and we had halibut sandwiches. My knee was getting pretty stiff at this point but the rest helped and I stretched out and trucked on. We hit a slight uphill for the next 15 miles but the wind died down so we were able to cruise at about 10 mph. When we stopped in Glamis, some dudes told us that the road got pretty bad up ahead so when we ran into another section with a tiny shoulder, we decided to pack in to the sag vehicle and bypass this section rather than risk our necks at this point. We drove for about 15 miles through rolling hills and windy roads with no shoulder until we finally came upon a nice wide shoulder where we put in our final ten miles for the day. At this point, the shoulder was wide, the wind was at our backs, the road was slightly downhill and I had worked through the breathtaking pain in my knee. We enjoyed our last ten miles at about 15mph and called it a night. Tomorrow we will pick up where we left off.

 

 

Freeways Up and Down

Current Location: El Centro, CA

It is day 4 of my adventure, a rest day. This morning we took the bikes in for maintenance and shopped for more supplies (lots of food). We visited a great bike shop called Finish Line, 560 Main Street El Centro. They told me that a group of riders had come in a couple of days ago and they were riding in support of their friend who has Lou Gehrig's disease. To find out more check out http://coast2coast4kalan.net.

The past two days have been pretty intense.

Day 2 consisted of climbing, lots of climbing. We started out on about a 4-6% grade for 16 miles. The road was not straight so we could only see the hill directly in front of us, but when we made it around each bend, we only found another hill in front of us...for 3.5 hours! We stopped for lunch at 230 and we stopped for way too long. My knee became really stiff during our brake. I rode for another 2 miles and had to call it a day because my knee was screaming. We still had 2 other riders other than Dad and me at that point so Paul and John took up the slack that day.


That night we stayed at Outdoor World RV Park which was lovely. The others drank some Coronado Brewing Company Islander IPA while I iced my knee.


The next day, we started off on a short climb then it was downhill to Jacumba, CA. Right on the border, Jacumba had a killer airport and a gas station. We had to be careful not to get hit by one of the many border patrol vehicles in the area.


If you look closely, you can see the border fence in the background

Leaving Jacumba was a slight uphill where we met the sag vehicle and placed our lunch orders (service with a smile). When we reached the peak we knew we were in for a helluva ride. Our side road ended at the onramp to the freeway and the bike path was just to the right of the rumble strip. This was the craziest ride (rollercoasteresque)! It was a 6% grade for about 8 miles. 30 mph while riding the brakes. I drifted onto the rumble strip a couple of times and it scared the ____ out of me. Not only was it loud and bumpy, but I started losing control and I decided to stay off. The gutter was on my right and everything was coming at 25-30 mph not to mention the semis that were passing just on the other side of the rumble strip, maybe Im being a bit over dramatic but it was crazy in the totally sweet sense of the word (does that even make sense)?

After that intense downhill we met the sag for lunch and did not stay too long this time. Got back on the bike and kept cranking. On this stretch we had a straight desert stretch just like you see in the movies, slightly downhill we averaged about 17 mph for about 15 miles, it was a lot of fun to crank out miles at a rate like that.

Then we turned onto Drew Road on the way to Seely CA, 8 miles to go. This was the bumpiest road ever. If the road had been smooth we could have cruised at 14 or 15 mph but I could not get above 9 because the road was so bumpy. For 8 miles we dealt with this until we reached the RV park again. We finished 56 miles by 2pm so we decided to crank out a few more miles while we were on a roll. After a brief stop at the trailer, Dad and I treked 7 more miles to El Centro. Sag picked us up and took us back to the trailer for the night.

Tired and sore, we took a dip in the hot tub at the park (livin' the high life) to try to cater to our aching knees. Had a great chili dinner, shot the bull a bit with Paul, John and Tyler and retired for the evening.

Paul, takin' 'er easy

Paul, John and Tyler left this morning. It was great to ride with those guys for a few days. It meant a lot to me to have John there because he too has his heart in this thing because his daughter Ashley has Friedreich's Ataxia.

And so we carry on, a few more pedal strokes closer to Memphis and a cure for Friedreich's Ataxia...

http://rideataxia.org
http://firstgiving.com/rideataxia

 

 

Dream Weekend

 

Im finally on the road! I have been in San Diego since thursday night and I have had a great weekend, maybe the best ever...

The day before I took off (Wed), I had an interview with Good Day Sacramento. They showed up at my house at 7am and they stayed til 10. We did 3 different live spots and we taped a piece that played at 4 and 6 that night. It was a lot of fun.


As we were driving down on thursday I got a call from Ryan Burnett at Scripps Research Institute who told me to Call Marisela Chavez who gav e me the number of a reporter at a radio station. I called KPBS and the reporter recorded our conversation to be aired at a later date...

The next morning I visited the Fox studio in SD and had a 5 minute live interview that was a lot of fun. I hung out in the green room and visited with another guest who was going on to talk about the demand for nurses and the nurse shortage in the San Diego area. I went on the set with crazy lights and cameras and anchor people, they were hea ily promoting the Monster Truck Jam...Check out this link to watch the interview: http://www.fox6.com/mediacenter/#top


That day I also visited the research team at Scripps Research institute. I went in and we chatted for a while about all the great things that are happening in FA research right now. The whole team at the Joel Gottesfeld (I hope I spelled that right) lab is great and I am glad I got to meet them and check out their lab. They are working on a certain compound that htey have found that can reverse the effects of FA in their cell models, it is very promising because it has not been found to be toxic at this point and they are constantly improving their product.


A sweet San Diego sunset on a Friday night:


That night some friends showed up and we went out in Downtown SD. We went to this Irish pub and about every 25 minutes someone new would show up, someone that I hadnt seen in a couple of years, it was a trip. I took my first rickshaw ride back to the car that night...


Saturday we hung out at Ocean Beach at my good buddy Sean Farrell's place and played Beer Die, foosball and frisbee. It reminded me of Pine Lane in Davis...(by the way, thanks Farrell, for letting us take over your pad for the weekend). That night we went out in OB and Adam got kicked out of a bar and we all had a great time...



Just before we went out that night, my parents showed up and got settled in at Mr. and Mrs. Farrell's place in Coronado. Thank you, Denny and Eilene, for your hospitality.


Sunday morning I got a call from a local ABC station who wanted to do an interview that day. I told the anchor person that I was going to lunch with friends at 11am. She told me they would be over in 30 minutes. The interview was a lot of fun and I made it to lunch fashionably late.


Sean is a Brewer at Coronado brewing company so we had lunch at his brewery and everybody enjoyed his hand crafted brew and the informative tour that followed...

All of this led up to this morning...the departure. The day was finally here, after a year of planning, it was go time...

I showed up at Scripps Research Institute at aboout 8:05 and was flagged down by an anchor for KUSI, a local news station. He had me jump out of the car and we did a live in terview about 15 seconds later. After that, I was greeted by all my friends and family along with the research team at Scripps, thee head of the lab Joel Gottesfeld, the head of the National Ataxia Foundation San Diego support group Earl Mclaughlin, and the president of the Friedreich's Ataxia Research Alliance, Ron Bartek. Ron told me that he is working with NAF (National Ataxia Foundation) to fund a joint project where both organizations will research, review and fund the project. The money that I raise will be shared evenly between the organizations to get this project started. I received an email from Mike Parent, the head of NAF saying the same thing. I couldnt be happier with the outcome of this effort, both organizations have meant so much to me in the past couple of years.


Now we are on the road...finally. Today we started in La Jolla and rode 37 miles to Lakeside, CA. We started with 9 people including a few new friends. We started out in La Jolla and rode down hill for about 25 miles. The last 12 miles were slichtly uphill and toe=ward the end of the ride we ran across a guy who said "u headed to Lake Jennings? Thats quite a climb." however, it wasnt too bad. Right now we are at an elevation of 500' and tomorrow we will end up at 3800'...hooray. The weather was great, the company was better and I am ready to do it again about 50 or 60 more times.

 

 

 

 

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FARA Ambassadors are a united team of patient volunteers living with FA who are committed to supporting FARA in the search for treatments and a cure.

The Ambassadors are a service team within the FARA organization. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community. Together we seek to know more about the research and pharmaceutical pipelines being developed through FARA in order to be better prepared to represent the FA community when opportunities arise to educate the medical community and potential donors. When meeting with scientific groups, pharma partners, and the FDA, our purpose is to promote awareness of the patient perspective of living with FA. We believe our dedicated support is key to continued success toward our ultimate goal of treatments and a cure.

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This blog is a vehicle for the voice of the FARA Ambassador Program and features posts from Program participants and friends from the FA community on a wide range of topics.

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