My last post was on May 17, right after the 2010 NorCal Ride Ataxia, now it's 6+ months later and this last weekend I did the 1st annual SoCal Ride Ataxia. The two rides are very different; 100 miles vs. 80 miles, the sunny Sierra's vs. the cloudy Highway 1 south of Long Beach, and a 2,333 foot elevation rise vs. 213 feet! lol In common the two rides shared wonderful people bound in a common purpose, outstanding food both at the rest stops and at the Outback Restaurant provided meals, and at least for me 2 days of riding that left me emotionally and physically drained. Below is a chronology of the SoCal Ride Ataxia.

Ride Prep: I continue to average one 23 mile ride a week with a riding buddy, not really enough to sail through any 40 mile ride but better than the alternative of less to none! lol

Thursday, December 2.
The morning was spent in last minute errands. Mid afternoon found me at my brother-in-law's tow company shop for 2+ hours where he graciously undid half the work he had done previously on Brianne's converted wheelchair bike trailer, and re-routed the tow bar from just under the bike seat back down to the frame next to the rear wheel hub. Dinner and final packing and in bed by 10:30pm.

Friday, December 3.
Up at 4:30am to beat the Bay Area morning rush traffic and to reach Long Beach before their evening rush traffic. Tried to sneak around not to wake Susan, who stayed home to do Christmas projects and babysit our 2 youngest grandchildren (Kayden all day Friday, Chelsea Saturday until 4pm-ish when the baton got passed back to Kayden who stayed the night) I wonder who was tireder from the rigors of the weekend?! lol
On the road at 5:15am and on 5 just before 7am with no traffic jams, yess! For the whole trip I set the cruise at 57mph and reaped the reward of 24.5mpg with my 3/4 ton PU diesel. I reached my motel at 1:15pm, got settled and was at the Long Beach Outback Restaurant for pre-registration and to fit a local FA young woman to Brianne's trailer so she and her team could do the Saturday 10 mile course in Dana Point, the 1st day destination for the 2 day riders. I met Kelly and her wonderful friends and family, got her fitted with no problem, then enjoyed the company of the other riders for a bit. Ride starts at 10:30am so I was in bed by 11pm. BTW, there was a huge dog show last weekend so you had to watch where you stepped all over town! Well, at least there were a lot of pampered dogs all over.

Saturday, December 4.
Got to the Outback Restaurant starting point at 9:30am, ditched the truck in a parking garage, and was ready to go by 10am. Awesome Outback continental breakfast with all kinds of biking foods; it would be hard to lose weight on this ride! Weather was iffy and in fact as we started so did the rain, a light intermittent teaser for the first half hour. After that just a cool cloudy day. The route is flat for the first 22 miles and more than half of that is on the beach boardwalk, with the rest on or next to Highway 1. My bike computer was inop for the first 9 miles because Kayden had fiddled with the speedometer sensor a week or two previously and I had forgotten. The first rest stop was a bike shop and he tweaked it back in less than a minute. I think we had a bit of a head wind 'cause my legs were a tad tired even before we hit the 18 miles of coastal hilliness. The last 5 miles my leg muscles were on high alert for cramps and felt like mush. The courtyard of the Double Tree was a welcome sight.
Shortly after I arrived Kelly's team came in and I got a report on the trailer's performance. Flawless she said with a big smile! It made the whole weekend worth it right then. I like it when my FA niece's look happy. Even better Kelly's friend's husband is going to build her one from scratch! So then I hooked the chair to my bike so I could tempt the other FAers to ride in it and maybe do a conversion for themselves. Matt Rupel and Bart gave it a close scrutiny.
Then Lauren Williams asked for a ride "up a hill". Up another hill?? Whew! So OK, all we gotta do is turn right in front of the hotel, there's a little bridge (uphill) and I would pull a U-ee and pedal right back; no sweat. We pop out onto the road, turn right and 30' up the road I realize all the big white arrows on the pavement are pointing toward me! Oops. No traffic; quick U-ee and we're street-legal again. So I figure (on the fly) all I gotta do is go to the next intersection, do a left, left, left and we're back at the hotel. HaHaHaHa, silly boy. I make the first left and discover there are not interconnecting streets for 2+ miles and half of it is up hill! We stopped 3 or 4 folks for directions, Lauren's shoes kept falling off because of the front tie-down strap, she got a heel scrape from the strap ratchet (I wrapped my extra nylon pants around it), a borrowed light jacket put on backwards kept slipping off, daylight was fading (rear blinking light OK, no front light) and it was getting distinctly chilly. It took us nearly an hour to make the big loop and get back! There was a group watching for us! lol By then I was tuckered! And it was 5:30pm with dinner at 6pm and me still in riding gear.
I was on time and the dinner was wonderful; a choice of salmon, steak, chicken and/or shrimp with side dishes, catered by Outback Restaurant. After dinner there were several research presentations that I found really interesting but my body had trouble staying focused on; there were a lot of tired people there. We got an update on HDAC's from Scripps Institute, the EPI 743 from Edison and a new way to detect FA treatment impacts in the brain; cool stuff! Pics at 9am, ride start at 9:30am so in bed at 11pm after taking another set of Advil.

Sunday, December 5.
Up at 7:45am, more Advil, checked out, breakfasted and smilin' for pics by 8:50am. Took off straight into the 18 miles of hills but it was OK, I was fresh. Again the last 5 miles was high alert for cramps. Weather was better with broken clouds. On the ride back my riding time was 3 hours, 5.5 minutes, total time with stops was 4 hours and 10 minutes. Average speed was 13mph, with a max of 33.5mpg (some of those coastal highway 1 downhills were fun!). The route was 40.3 miles long.
So I had a celebratory beer, hugged everyone and left at 3:30pm for home. Arrived at 11:30pm after going through a lightning storm and intermittent rain up 5.

So if you're still with me by now after this lengthy chronicle, thank you. The ride was good, the FA extended family was wonderful and the ride support was enthusiastic and helpful. And by tomorrow (Wednesday) I'll be pretty much recovered. ;-)

My network of financial supporters have already been involved in both NorCal RA and my August Outback Restaurant lunch fundraisers so I didn't even put together a fundraiser page until last week Thursday when a friend on Facebook asked how to get sponsorship money to me, so I quickly put one together, and I see some wonderful folk have used it. If you would like to support me with a post-ride sponsorship by all means go to https://sna.etapestry.com/fundraiser/FriedreichsAtaxiaResearchA/socal/individual.do?participationRef=968.0.287365167

It's Monday night, and my body still feels like I just did a full triathlon without training! lol My goodness the 51 mile ride back to Folsom from Grass Valley was a bun buster! In any 1 of my 4 days riding from Portland to Seattle it wasn't this tough. It wasn't until I was well into the route that I realized the meaning of +3146/-5417; in order to descend 5,417 feet I had to climb 3,146 feet! And certainly I coasted merrily down many a hill, but it seemed I had to climb way back up at the bottom of each. The day started out at about 55 degrees at 8:30am when we pushed off, but then got to 80+ degrees by 11-ish. At the lunch half-way point Susan was there with the truck and I dived into the sweet coolness of the A/C for a few minutes. Lovely!

With about 20 miles to go and sitting about in the middle of the pack, another 65 year old and I (I'll be 65 on the 30th) paused at the top of a hill, looked at each other and pondered out loud, "What ARE we doing here?!". He asserted and I agreed that there's not enough money to pay us to do this. We decided the answer was love and caring. Love for these FAers and caring that they should not have to live a downward spiral. Research can change that.

During the last 10 miles 2 thoughts kept me (barely) going. All of you, my sponsors, cared enough to support me in this so more money can be aimed at FA research possibilities, and I didn't want to let you down. And second, I thought of the FA'ers facing their never ending (until a premature death) hills in life threatening their Quality of Life, and them struggling up each one just to see another beyond. From walking to walker to manual wc to joystick power wc to having someone wc for them. From keyboard typing 100 wpm to 5 wpm to using a pencil or knuckle to poke each key. And so I rode until I couldn't, and I walked until I couldn't, and then I flexed until I could again. And I made it! All 51+ miles!

3 hours and 58 minutes riding time, about 5 hours elapsed time, and an average of 13mph. And for any lesser a reason I'da been long since been in that air conditioned SAG wagon being given a lift to the finish line.



So here I am just after getting off my bike at the finish line. As I swung my leg over the seat the world's biggest cramp grabbed my rear thigh muscle. You can almost see me saying ow! ow! ow! The ladies then started poking bananas at me, shouting potassium, potassium, potassium! It woulda been pretty funny if it didn't hurt so much. lol


Here's a video clip of me at the finish. ;-)



I was so beat last night I tried to blog but couldn't think straight. We stayed at the campgrounds which was an excellent idea since neither of us would have done well breaking camp. This morning was slow so we left about 12:30pm after changing a bulging trailer tire and breaking camp.

I so appreciate the support I and Brianne have received in sponsorships! There are so many good causes and such pressure on our finances these days; who and what to support and how much to help with have become difficult questions. Whether or not you chose to sponsor us we understand and we value your prayers and good thoughts. The door by the way has not closed on helping. If you might still want to help go to
https://app.etapestry.com/fundraiser/FriedreichsAtaxiaResearchA/norcal/search.do
and click on B or P.

If you are interested in our excellent Outback lunch fundraiser on July 25th (Parents' Day) let me know!

Have a wonderful week, month and year! Exercise, eat well and for sure smile, laugh and have fun!

End of the first day! Getting ready for a delicious Outback provided dinner. They are so wonderful! Got to he park at 5:30am; we both helped set up and be ready for the riders at 6:30am. 50 mile riders rolled away with fanfare shortly after 8; so did Susan! Doug brought the pedicab over at 9; Brianne showed up at 10, just 10 minutes before the 10 mile group was scheduled to leave. We got her fitted with her wheelchair seat and back with a back extension using a big bakery pan! Yes! The pedicab has a seatbelt so we threw a quick chest strap around her and off we went! Her sister Cheri rode with her to help stablize which worked well.

SHE FINISHED THE COURSE IN 1.5 HOURS, 11.9 MILES! Good for her (and the wonderful super-athlete Doug!). Most of the time I was the scout out front cautioning oncoming riders of the wide pedicab and relaying bump and hill information back to Doug. I did pedal about 2 - 3 miles and it was work! The afternoon was spent supporting the other riders, helping with cleanup and driving back up to Grass Valley. I'll talk more soon!

Just finished a fun day helping the pre-work of the ride. Gotta get to bed (it's 10:45) and to be at the starting site to help set we'll get up at 3:30am. The weather tomorrow will get in the 80's by noon; pedal fast! lol

Good Morning! Here just a couple of days before Ride Ataxia NorCal comes the press release that the most promising of the FA treatments being developed is now officially going into clinical trials!

http://www.prnewswire.com/news-releases/repligen-files-investigational-new-drug-application-with-fda-for-first-drug-targeting-the-core-genetic-defect-of-friedreichs-ataxia-93666409.html

The sun is shining brighter and the air smells sweeter today! This is why we are throwing buckets of money into FA research, for the accelerated progress it causes; money is time in the FA world!

Gotta go finish packing the trailer!

:-)

It's 11:45pm and the trailer is parked in front. Of course nothing is packed but we're only leaving tomorrow. ;-) Not to worry. A few more Emails then off to bed until 5am when I'll finish all the packing but clothes (Susan will be sleeping). I also need to transfer a bunch of stuff from the desktop to the laptop. :-( Time consuming.

I got a rash of registration phone calls tonight (which helped keep me from the trailer) and more new registrations. We're pushin' 160 riders now! Critical mass to make a fundraiser ride roll!

The pedicab deal is in place. Good. Friday PM for 2 hours we train on the pedicab. I am now thinking the pedicab course will be measured in hours rather than miles; the operators say it could take 3 - 6 hours to do the 10 miles, and I really don't think Brianne can sit comfortably in an improvised seat for that long. We'll see.

I am done training! lol I just ran out of time this week to do one more ride. I can just feel those muscles getting rested and primed for Saturday! Oh, yeah!

Considering my late start in fundraising I'm doing quite well. The total of online and offline donations is sitting at about $700 right now. I want to thank every one of the donors for their caring for Brianne and interest in improving her Quality of Life. The prayers being offered for success in FA research are also very much appreciated. God does listen.

We'll have the laptop with us but who knows where the wireless will be. I will try to give you updates through the weekend. Right now our schedule is:
- Arrive campground 5pm Thursday.
- Friday pick up a rental bike, mark part of the 2nd day route, drop off equipment at the park, get trained on the pedicab, get pre-registered at the Outback Steakhouse, drop off the rental bike, get back to our trailer.
- Saturday up at 4am and at the park by 5:30am, help set up, give a sendoff talk to the 25 and 50 mile riders, ride with the pedicab, then finish the 25 mile route (Susan will be working SAG), pick up the rental bike and another passenger for the ride up to Grass Valley, de-tune, eat an Outback provided dinner at 6pm and into bed.
- Sunday up at 6am and off on the 2nd day leg about 8:30am, finish about maybe 1:30pm, help clean up, take 2 passengers back up to Grass Valley, eat dinner, and drink beer with Bart Rupel (we have a date).
- Monday sleep late and return home by 5pm. Probably stop by to see my Uncle Jerry and Aunt Lucille.

Piece of Cake!! We can and will have fun, work hard, and gather baskets of money to throw into FA research! Yes!! Thanks again for supporting me.

Wow! Feb 14 was a long time ago! Since then I have been continuing to ride on average 23 miles once a week, as much or more just to get the exercise as to "prepare" for this Ride Ataxia NorCal. This year I am the official RA registrar plus I volunteered to drive the RV in Team FARA's RAAM adventure coming up in June(http://www.raceacrossamerica.org/raam/raam.php?N_webcat_id=1). Whoo, 3,000 miles in 9 days by bicycle! These 2 projects plus numerous others have kept me away from this blog and getting sponsors to support my ride. :-( So now it is catchup time! :-)

Here's my latest and greatest plan! My wonderful oldest daughter Cheri located 4 pedicabs (bicycle powered fancy rickshaws) operated by FABA (Folsom Area Bicycle Advocates, http://www.sacbike.org/faba/pedicabs.htm) and I negotiated with them to use 2 of them on the 10 mile route to allow FAers that cannot ride a bike or trike to participate and raise funds for research! Cool! Brianne and a young man, Dylan, from Missoula, Montana will be in them and several of us will pedal them. So my Saturday will start with managing and pedaling the pedicabs. Can you can support me in this? By the way, Pedicab, pedaler and passenger combined weight is over 500lbs! I'm told the average speed is 2-3 mph; now that will take some pedaling! Just that 10 miles (http://ridewithgps.com/routes/31653) will take 3 - 5 hours of pedaling! If time permits I will then finish the 25 mile route (http://ridewithgps.com/routes/312730, another 15 miles into the foothills and return.

Then Susan will pick me up and deliver us back to the Nevada City Fairgrounds campground (we arrived with trailer on Thursday) where we will enjoy the company of all the riders (130+ total) and supporters for the evening.

Sunday I will pedal my way 51.3 miles (http://ridewithgps.com/routes/31639) back down to Folsom. Do notice it ain't all downhill!

So there's my plan! The bike's ready, I'm ready (as I'll ever be), and now, are you ready?? Go to https://app.etapestry.com/fundraiser/FriedreichsAtaxiaResearchA/norcal/individual.do?participationRef=4786.0.121601057 to be my sponsor. Or, go to https://app.etapestry.com/fundraiser/FriedreichsAtaxiaResearchA/norcal/individual.do?participationRef=4786.0.124409951 to be Brianne's sponsor!

All I want is for a treatment to be found to give Brianne a way off this road of FA she has had to follow for so long. You and I can do this.

It's a new year and another ride! WhooHoo!

Just a note to let you all know the 2010 Ride Ataxia season is about to begin! The first 3 years were tied to the annual National Ataxia Foundation conference. After last year's riding in the rain, hail and cold for 3 of the 4 days the organizers looked to this year with the conference being held in Chicago, in March, and they were worried with good reason. The weather around Chicago in March is completely unpredicable and tending strongly toward really bad. It was time for a change in strategy. So they regionalized the ride so more people more locally could participate in the ride. And they dissociated the ride from the conference timing so the regional rides could optimize the seasonal timing in their area. Last October Phillie had a ride, one is planned for April in Florida and the LA area will have one this Fall. For our region, since Kyle Bryant is from the Sacramento area he took the leadership role in organizing this year's Ride Ataxia Nor Cal for May 15 - 16 starting in Folsom and swinging up to Grass Valley and back, a challenging route.

Yes, I will be riding again. My bike is hanging in there and so far so am I. The battle to defeat Friedreich's Ataxia is being won, the tide has turned in our favor with 7 FA clinical trials happening right now and more are planned soon. Now it is not that time is money, it is that money is time saved. The more money applied to the battle the sooner it is won. And Brianne needs a sooner rather than later victory in this war. So yes I will be riding.

And I hope you all will be riding with me too! This ride has always been about generous donors and gathering bunches of money to throw (intelligently) at FA. So join me by becoming a financial sponsor at
https://app.etapestry.com/fundraiser/FriedreichsAtaxiaResearchA/norcal/individual.do?participationRef=4786.0.121601057 ; click on "Sponsor Me".

Or ride with me and gather sponsors of your own for this grand bike ride!

You can get more details of the ride at http://www.rideataxia.org/norcal/ .

Enough for now. Thanks for reading! I'll write a bit more as I get organized.