First Float, then Swim

In adaptive sports it is incredibly important to find the right equipment to avoid limitations.

One of the most prominent symptoms Friedreich’s ataxia (FA) is difficulty with balance and coordination.  The severity of this symptom varies widely from person to person.  Some kids are in wheelchairs at a very early age, often before the age of 10.  I was diagnosed with FA at age 17 and have been using a wheelchair since about 2009 (I am 32 now).  I still have plenty of power left in my legs, but my coordination is greatly affected.  This limits, for example, the speed that I am able to spin the crank on my trike, or the speed at which I am able to kick my legs when I swim.

Ever since I was very young on swim team, I have not had a very powerful or fast kick.  I never attributed this to FA until now.  However, it makes sense that even though I was still able to walk, run, and play similar to other kids, the symptoms of FA were still showing up in ways we did not recognize, such as the speed of my kick in swimming.

Today, my kick is almost nonexistent.  This causes my lower body to sink and slows me down as I drag through the water.

For a while now, I have been struggling through my swim workouts hoping that my kick would improve but my lower body continues to sink.  So I ordered wetsuit pants (XTerra Lava Pants). They are not as hot and are less restrictive than a full wetsuit, and they float my lower body to compensate for my weak kick.  They came in the mail yesterday and I tried them out for the first time in the pool last night.My New Wetsuit pantsThey worked like a charm!  My speed improved partly because my body is now floating on top of the water and partly because they are really slick, like shark or dolphin skin, allowing me to slip through the water.  Because they are just pants covering only my lower half, I am able to wear them in the pool without overheating.

This is how I feel when I am wearing them.

I was feeling pretty good last night, and I swam 1000 yards (farther than usual) with less effort than ever before.  Sometimes you’re only as good as your equipment.  In adaptive sports, it is incredibly important to find the right equipment to avoid limitations.

Posted in FA Progression, Fitness, Sports, Triathlon | 1 Comment

My New Catrike 700

My last post explained how my Catrike was stolen.  I’m excited to report that it has been replaced!  My apartment complex requires all applicants to have renters insurance, and I now appreciate that requirement!  State Farm replaced it thanks to the quick work of my awesome agent, Dave Woods.  Special thanks also to Catrike in Orlando, FL and Bikesport in Trappe, PA for working together to get it shipped and assembled.

I picked up this new Atomic Orange speed machine on Wednesday night.  The new color gives off energy when you see it in person.
Atomic Orange Catrike 700

I could not sleep on Wednesday night; it was like Christmas Eve, and I just wanted to wake up and play with my new toy.  I woke up early on Thursday morning to take it for a spin and dial it in.  I personalized my machine by making adjustments to the position of the handles and neck rest and I tightened the seat (You can see in the photo, it was pretty loose).  Bikesport got the boom-length pretty much right on, but I may take it back in to have them take off a couple centimeters so I can adjust it if needed.

After making the initial adjustments, I clipped in to my brand new Shimano Ultegra Carbon Road Pedals (mmmboy!) and took the first few pedal strokes to the bike trail. Once I got to the trail, I skipped the warm up and immediately took it up to max effort (I am smiling as I write this).  It was still pretty early so I had the bike trail all to myself. As I was flying down the bike trail at 20mph, I remembered the first time I experienced this feeling-  Ultimate freedom.  It was November 2005.  I had not started using a wheelchair, but I was very unsteady on my feet.  I looked like a drunk person, and I could feel people staring and judging as I walked around the grocery store or out with friends in downtown Sacramento or at the California State Fair.  I was so unsure of myself and my confidence took a hit every time a stranger reminded me that I was different.  However, when I sat down on a trike for the first time, I was free from the restraints of my disease.  The trike seemed to allow me to defy gravity.  I was no longer on the lookout for the next tripping hazard or afraid that I was going to lose my balance at any moment, in fact I started thinking about how far I could go under my own power.  I felt powerful again.

All of that came back to me in the few seconds that I could sustain the effort…and then I ran out of breath and realized that I have a lot of work to do to get in shape for Tri|AC in September.

The new Catrike 700 is pretty incredible.  It is hard to believe they could improve on the amazing machine that allowed me to participate in The World’s Toughest Bike Race. However, this new version (now about a year and a half old) has lots of seemingly subtle improvements that make a big difference.

Here are some of the changes I noticed:

  1. Larger wheels in front.  My RAAM ride has 16″ front wheels, this one has 20″.  This allows for a wider range of high performance tire choices and a smoother ride just to name a couple benefits.
  2. Improved ground clearance.  This helps in a number of situations including speed bumps and debris on the trail/road.  It is important to note that the aerodynamics and center of gravity did not suffer with this improvement, the cockpit is rotated rather than lifted higher making the rider slightly more reclined.
  3. More weight distributed to the back wheel.  The crossmember that connects the two front wheels is shifted forward which puts more weight on the rear wheel; improving traction and braking.
  4. Custom Velocity rear wheel with race hub and off center rim.

    Velocity off center rim The off center rim helps with stiffness which allows more of the power you input with your foot to translate to power to the pavement.

I am incredibly excited to see where my new Catrike takes me next!

Posted in Cycling, FA Progression, Fitness, Sports, Triathlon | 2 Comments

Minimize the loss. Focus on moving forward.

A few weeks ago while at a fundraiser in New York City to benefit The Million Dollar Bike Ride for Rare Disease research, a supporter asked me how far I would be riding that day.  I told him 34 miles and he was really impressed. 5 min later he came back and told me if I ride 34 miles he would make a generous donation.  Sweet!  That was a few weeks ago.

On Friday May 2, with my focus on riding my 34 miles the next day and already checking it off the list I came home to find that my Catrike was not in the spot where I keep it in the parking garage of my building.  It was gone!  Anyone who knows me, knows that my Catrike is part of what defines me; my accomplishments on my Catrike are no small part of my general confidence, not to mention my health and well being.  So with a pit in my stomach and my heart racing I saw the cable and bike lock just hanging there, still locked, untouched.  How did someone unlock my Catrike, take it, and then lock it back up.  My mind raced.  I racked my memory and then remembered the last time I put it away.  I was searching the bags on the back to make sure I had spare tubes for my next ride, which would be The Million Dollar Bike Ride.  I discovered that there was only one tube in there and it had a hole in it so I took it upstairs to patch it.  That distracted me from securing the lock.  I have owned a trike for almost 10 years, and that is the only time I neglected to lock it up.

My Catrike is gone!  It was like someone cut off one of my limbs, or removed a vital organ.  My Catrike is my freedom.  When I ride, I feel powerful, like I can accomplish anything. When I am on my Catrike I am not disabled, the sky is the limit.   And all of that was gone.  And then I thought about the ride the next day and my commitment to ride 34 miles.  I may not be able to hold up my end of the bargain!  I sat for 10 minutes, with all of this swirling in my head, I could not move.

Whenever I don’t know what to do, I call my Dad.

Dad knows what my Catrike means to me, he was right there during all of my epic journeys, so I was not going to be surprised if he was a little freaked out too.  However with a level head and a calm voice he explained what I needed to do.  It was almost like he was saying (without actually saying it) “The world is not ending, you’re gonna be alright”.  He asked me if I have renter’s insurance, I do.  That should cover it, he said.  And then he told me I needed to file a police report for a stolen item.  Ok, there’s some hope here, that was a start at moving forward out of despair.  But what about the donation and the commitment? I needed to be ready to ride in the morning.  Then we thought of my original trike.  Now I use it on my indoor stationary trainer for spinning during the winter.  More hope!  However it had not seen the light of day in a few years.  I had no idea if it was road-worthy, but it would have to do.  It lives in my office which is upstairs about half an hour away.  So I called a Teammate, Evelyn, and she met me at the office to bring the trike down and load it in the van.  We put air in the tires and they did not leak!

I rode 34 miles the next day and held up my end of the bargain.  During the ride and after we finished I was not so fixated and freaked out about what was going to happen with my trike.  I had my moment of panic and grief and then figured out solid steps to start moving forward.  The fact that I had this challenge, this purpose, in front of me minimalized the situation of my loss.  My need to ride the 34 miles became more important than my loss.

I think this situation is in some ways similar to being diagnosed with a rare disease.  The initial shock knocks the wind out of your chest.  There is a justified period of motionless despair.  However, when you find out that there are others going through the same thing and there is real hope in research and you can contribute to the forward movement of the community, the diagnosis takes a back seat to the purposeful forward movement.

Posted in Cycling, FA Progression, Sports | 17 Comments

Speaking in Seattle!

Friday, June 13, 2014


Cycle University
5440 Sand Point Way NE
Seattle, WA 98105


I will be giving a talk about my journey with FA and how cycling has changed my outlook on life.  I will include stories from my three multi day rides; San Diego to Memphis,  Sacramento to Las Vegas, and Portland to Seattle, plus stories from Team FARA’s RAAM journey and how I started a nationwide bike ride fundraiser and the impact it is making on other people and the research landscape for FA and rare disease.
Plus if you are interested in what it takes to do RAAM and are looking to assemble a crew; my co-organizer and crew member, Felicia, will be there to entertain questions, and share experiences and insight from the RAAM crew perspective.

It’s going to be a lot of fun!  Hope to see you there!


Posted in Awareness, Cycling, Ride Ataxia, Speaking, Sports | Leave a comment

Book Feature – Rainbows in Cobwebs

Rainbows Cover

My story is featured in a book that comes out today, called Rainbows In Cobwebs. In this book, bestselling author, Margaret Hardisty, and Dr. Vance Hardisty, join hands with a team of 65 writers (I’m one of those writers) who share real-life stories that fascinate, inspire and reveal practical ways to conquer or rise above great hardship. Check it out on Amazon here:

Posted in Uncategorized | 1 Comment