Risk vs Reward.... Hiking the Napali Coast

Coming soon......

Kalalau Trail - Na Pali Coast

With Johnny on the Napali Coast

Rapping on Life this Tuesday Morning

Sometimes when I am feeling down I try and imagine how my life would be without FSH. Honestly I never get very far, because I can't. Having FSH has shaped my experiences and ultimately made me who I am today. Given the chance to go back in time I truly would not change a single thing. The path I have set out on has allowed me to come across the most incredible people and experiences. I have grown more than I ever thought possible and am always eager for an opportunity to grow and learn even more. The down and out feeling never lasts long.


Not only does this realization turn an inkling of a negative feeling around, it also serves as a reminder to live each day to it's fullest. A flashing green light with bells and sirens screaming at you to grasp every opportunity that comes your way. To challenge yourself physically, mentally, and emotionally and to "live" YOUR life. Having FSH has given me much more than it has taken away. It's a bold statement, I know. I didn't come to this belief easily either. Sure it has robbed me of valuable muscle mass that aids me in having an active lifestyle. But it doesn't rob me of any cognitive functioning, and instead has given me a huge gift in return. A unique insight on living. Life it to short to waste my muscle slaving away at a nine to five. I would much rather be wasting my muscle doing things that I want to do and experience life. No regrets.

A few months ago I was lucky to meet someone who shares the same views, and was again reminded of the wonderful path FSH has set me on. Not saying that I am still not hoping for a cure yesterday, but at the same time thankful that I am living and not just going through the motions.


With that being said I couldn't be more ecstatic about the $6.3 million dollar grant just awarded for FSH research. http://blog.fshfriends.org/


On a day to day basis I am always working to bring awareness to our form of muscular dystrophy. It is something that is very important to me and something that I hope to do more of in the future. Next week I am hoping to get the opportunity to do so and to give a larger voice to this "invisible" disease.

And on a final note, I was having breakfast yesterday morning with that wonderfully amazing person that came into my life a few months ago and realized that it was time to break new ground in a totally different area. I love my bicycle and will always be obsessed with it, but maybe adventure racing......? We will see what the future holds, but I'll only get there by living up today.

FIRST RACE OF THE SEASON

Last weekend Andy and I raced our first duathlon in Rochester, which is about 30 minutes south of Oly. It's tiny, so I thought I would add it's location. It wasn't till 2pm so the torrential downpour had let up by then which was rad. And I'm not normally moving so well in the morning so I'm all about the later start time. Andy did his first mile in like 4:40 so I was the first person out on the bike. I think I finished in 11.5 miles in 38 minutes. They haven't put the results up yet (hence the small race). Which is ok for me this early in the season. I kept getting passed by these dudes with huge legs. Someday I'll have huge legs! I think the funniest part of the day was the one guy totally outfitted with his aero helmet and full disk in the rear. It was a pretty informal race and he just looked like he was tyring way to hard. Well to each their own I guess! We are going to do another next month. Which should be as fun as our mud filled Saturday! My fitness is continuing to improve after a slow start to the season. More to come later!

FSH 2010 Fundraising Auction Video

By Elliot Bay Productions

Raising and Racing

So tomorrow night is FiSHing for a Cure 2010 Caribbean Nights Gala. The goal is to raise money for FSH research and bring awareness to the disease. I agreed to be in the film this year. My message is pretty straight forward: The thing I love to do most (athletics) directly makes my condition worse. The one thing that keeps my soul alive, and if given the chance I would devote everything to, progress my weakness. And to hit it home... I am missing the part of my DNA that rebuilds muscle and makes me stronger and faster. What a contradiction.

To be honest I'm really not looking forward to seeing myself on a big screen in front of a ballroom of people. Filming was painless and it was fun working with the guys from Elliott Bay Productions. I'm excited to see how they put everyone's stories together. And again kind of anxious about my message coming across.....

On the athletic front my friend Andy and I are doing a duathlon in a few weeks. It's a sprint (1 mi run/11.5 mi bike/ 1 mi run).... needless to say Andy's doing the run. He is a state record breaker and putting the pressure on! We'll win hands down. : ) My legs are feeling really good and I'm super excited.

1 state record breaker + 1 cripple kid = a competitive age grouper......?

FSHD in the New Year

I am not one for new years resolutions. I don't think you have to have a new number on the calendar to change your mindset or better yourself in any way. I believe setting goals, keeping a positive outlook, and continuing to grow as a person should happen year round. On the contrary I am excited for 2010 as something just feels different. Maybe it's all the news going on in the FSH world and the support of so many people pushing forward to make a change. All of these little steps are starting to add up and become larger movements. Just as Facioscapulohumeral muscular dystrophy has been recognized as the most prevalent form of muscular dystrophy our voice is growing. I feel like it's only going to get louder in 2010.

Fishing for a Cure 2010 Caribbean Nights Gala is coming up on January 30th. It's always refreshing to meet up with a large group of people who know what you are dealing with. The nature of this disease varies so greatly, and although it doesn't look like I have FSH (except to those who know what to look for) my shoulders and hands are shaking under gravity as I lift my hands to type this. Giving a voice and bringing awareness to this "invisible" disease is a great way to start 2010.

The increased difficulty and and pain of getting back to training this season is an issue I have had to dig deep into in order to come out with my glass half full. I will never be a pro athlete, but hey I can still ride a bicycle better than I can walk! : ) But in all seriousness I wanted to thank all the people who work so hard to put this event together. It means so much to me and so many others. Please help support FSH research in 2010 and lets be obnoxiously loud this year!

Seattle to Portland Bicycle Classic

I rode the Seattle to Portland Bicycle Classic on July 11&12, 2009 in order to raise money for FSH research. The overwhelming support of donations was incredible. Thanks to Marimichael and Melissa for donating their STP registrations to auction off. They raised a little over $300. As well as my Grandma who brought in a lot of cash donations. And to everyone who donaited online... Thank you!! It was encouraging to see that there are many people who are pulling for a cure for this form of muscular dystrophy. It affects so many peoples lives and as more people work together it will help to move us toward finding a cure.

My Mom and I went up to Seattle the night before. We stayed at a Lake Union hotel that was only about 15 minutes from the start line. We arrived around 3 in the afternoon so we could bum around and get an early dinner. Our hopes of an early dinner diminished after spending about an hour trying to get to the Columbia store. I wanted to enter to win a bicycle that they were giving away in conjunction with the Tour (de France). Which on a side note held my attention for 3 hours a day for 3 weeks. Well anyway, Seattle traffic sucks. Living in Honolulu for 5 years I often complained that things were all just backward. But traffic actually moves through downtown Honolulu! So we finally made it to the Spaghetti Factory for dinner and were back to the hotel at 7:30. Surprisingly I didn't have a very hard time going to sleep. I was really stoked to get to go ride on roads I have never ridden before!

The next morning I woke up at 4:45 and planned to leave to the start (University of Washington) at 5:15 for a estimated start time of 6:30. My Mom wasn't sure I why we were going to leave so early if I wasn't planning on starting till 6:30 and the hotel was only 15 minutes away. After I explained that 9,000 people were going to be trying to get to the same parking lot, it made a little more sense to her.

Sure enough we crept to the start line with all the other cars with bikes strapped to them. After finally arriving and unloading my bike, Rick and Terry Colella arrived. They are the founders of Friends of FSH (www.fshfriends.org). The non profit I raised money for by riding the STP. They are doing great things by funding research for FSH and I was glad I could help out a little. Jason was also at the start. An avid hiker he also continues to be active despite a diagnosis. It was great to have such great support! Thanks guys!



The first part of the ride was beautiful! It was along lake Washington with Mt. Rainer in the background. It was quiet and cool and the morning light made things dreamlike. It was a good time to reflect on what I was actually doing. I was diagnosed with FSH when I was 17, and doctors told me to quit all athletics and find a desk job. Yet here I was about to ride 200 miles on my bicycle.

My first scheduled stop was at a McDonald's in Renton. My Mom met me there so I could fill up my water bottles and get something to eat. I was feeling really good at this point. I had been on the road for about 2 hours and had tried to down the 2 bottles I had. I knew that nutrition was going to be key. I knew if I didn't drink before I was thirsty or eat before I felt hungry I was going to be in trouble. This is important for any athlete, but something I am constantly thinking about, due to the potential of permanent muscle loss. I only stayed 15 minutes as I was trying to minimize the amount of time I was hanging out at rest stops thus minimizing the total time I was out for the day.

My next stop was outside of Puallyup, after "the big hill." Which I was slightly concerned about because I'm not a climber. It was described at a mile long climb with 7% grade. All of my training is based on efficiency. Because I am somewhat limited on the amount of power and strength I can produce, I focus all my training on efficiency and keeping a high cadence while peddling. The "hill" was nothing to worry about. I have climbed much steeper and longer hills and absolutely didn't need the triple I was contemplating putting on my bike. I felt warmed up after the climb and ready to go. Which showed me that I had been successful in my training. The icing on the cake was passing a very fit guy walking his Tarmac up the hill. This is still cracking me up. So I ended up missing the spot I was supposed to meet my Mom. Have I mentioned that she is the best soigneur ever!! I ended up stopping at a Safeway with a bunch of other riders. My Mom found me after a few minutes. I tried to get some solid food down, but I wasn't very successful. I figured that as long as I was sticking with a bottle an hour I was good. I mix each bottle with Infinite. My bottle ends up being 220 calories and as long as I'm drinking, have never had a problem during a race.

The next stop was going to be Yelm, which was about 25 more miles. It was pretty much a straight shot. This leg of the ride I was able to get in and work with a group of riders and made it to Yelm in the fastest leg of the day. My Mom would always stop about a mile after the large organized stops. It worked out well for the major reason I never had to stand in line to go to the bathroom. As I passed the Yelm stop there were multiple emergency vehicles. Someone must have not fueled properly. It's a scary thing. I witnessed many people who collapsed in an XTERRA race I did last year. It was 108 that day. They were all men...... : )

Leaving Yelm was really hard. My final leg of the day was Yelm to Centralia. Shortly after I rolled out of my last stop we turned onto the Challis Western Trail. It was somewhat comforting being in an area that I train in on a regular basis. About 10 miles down the trail I hit the intersection that continues onto Tenino or branches off toward Lacey. So close to my house at this point! But I kept going straight. Soon after the intersection their was a slight downhill and then a wooden bridge with a chain link fence that ran along both sides. Out in front all of a sudden I saw bikes in the air and people slamming into the fence. I was actually amazed that this was the first crash I witnessed. The volume of riders on the road was like nothing I had ever seen before. So I made my way through the carnage and continued on the Tenino. I wasn't planning of stopping in Tenino, but the last 10 miles were very hot and I wasn't feeling so hot. My Mom met me there and I sat in the air conditioned car for close to 30 minutes. After rehydrating and cooling off I was headed to Centralia.

These 12 miles or so were the longest 12 miles I have ever rode. And it probably took me twice as long as I had been averaging each 25 mile leg! Along the way I ran a cross a sign that said "way to go Kalynn Dibble." I was really tired at this point and did a double take. That is my name! My massage therapist and her family had set it up for me. She by the way she is a miracle worker and almost has my shoulder looking somewhat normal. Finally after 100 miles I hit Centralia! This had been the longest distance I have ridden so far. I loaded my bike into the car and my Mom and I went to stay in Longview for the night. I thought that maybe I would be able to make it the 150 miles to Longview the first day, but I was having trouble shifting gears at this point.

The next morning was kind of hard to get going. Ok really hard to get going! But I know my body really well and how far I can push it, and knew that I was ok. My Mom dropped me back off in Centralia. My legs actually felt fine, but just being on the bike hurt. Because of my weaker core more weight than it should rests on the handle bars and it was not feeling super hot.

I stopped in Vader, which was about 27 miles from Centralia. It took me a while. Again not really because of my legs. My hands were killing me. It was much much cooler the second day, which was nice. Although there were thunder storms to deal with. By the time I make it to the 150 mile mark and the Lewis and Clark Bridge I was starting to get that feeling of hitting the point of no return. It's hard to explain, but meticulously training and logging has taught me what my limits are and I am able to stop before I surpass them. I'm not going to lie, the Lewis and Clark Bridge looked ominous. It was steep and high and they were stopping a few hundred riders at a time and police escorting them over the bridge. So I decided at that point to pull the plug on the day. Not regrettably though. I had made it 150 miles without putting myself in a hole and doing irreversible damage (we'll none that I could tell anyway). My training had been successful. I had ridden the farthest distance to date and also raised $3,300 for FSH research. I felt pretty good about the whole thing. Next year with a little more training I will be able to make that last 50 miles.