Atlantic City Triathlon in the bag!

I have had a triathlon on my list for almost two years now and yesterday I got to check it off. I was going to do TriRock Philly last year but was not allowed due to some limiting rules (see Do trikes belong in triathlon?) but the rules have been changed (see USAT Rules: Recumbent Style Tricycles Are Allowed!) and yesterday I completed the Atlantic City Triathlon Sprint Distance.

We left from the Philadelphia area Saturday and made the just under 2 hour drive to Atlantic City in a downpour. By the time we got there the rain let up and we met with some old and new friends to walk through the transitions and the tricky parts of the course.


We met in the transition area for a brief orientation and then walked down to where the bike exits and where the run exits. By that time it started to rain again and we got soaked to the bone but we needed to see the spots. I was not concerned about the bike but the run exit/entrance had a few bumps and a small slope. I am still a beginner on the pushrim so any slope has the potential to send me tumbling backward on my head. After the exit there was a bridge over the water that had me concerned also because it was a significant slope for me. All of my practice had been on completely flat terrain so the potential for disaster had me imagining the worst.

Through some para-tri friends I had heard of people putting weights on the front of their pushrim to avoid flipping backward so we thought we would give it a try. After we checked in to the hotel and changed out of our sopping wet clothing we headed to Kmart to buy the towels that I forgot to pack and some fishing weights to tape to the very front of the pushrim to keep it from tipping. We found what we needed but I had never done it before so I was unsure if it would work. I was more than a little concerned and nervous. I am usually pretty good at going with the flow but I felt myself physically tense up as I imagined what might happen. I did not say much at dinner and Felicia felt the tension so she busted out the secret weapon. Two of my FARA Teammates (Evelyn and Jamie) had sent emails out to our board members, a few people in the FA community, and my parents to get their encouraging comments for me before the race. To say I was moved would not do it justice. The comments were so kind and heartfelt and as Felicia read I felt the tension go away. Those messages put perspective on the situation and allowed me to get out of my own head. It was my turning point.

When we got back to the room we had work to do. I taped the weights while Felicia sewed the velcro that broke the other day…and somehow the theme from Rocky played in our room as we prepared for battle.

We arrived at the Tri at 5am and set up our transition area in the dark, using the flashlight on our phones to inflate tires.

Finally at 630 it was time to start. There were two other para-triathletes in the event, Daniel and David. I met these guys at a para-tri clinic in Maryland a last year so it was nice to reconnect and participate with some familiar faces.


We rolled down to the dock and took off the sweatshirts that kept us warm. We shivered a bit as we listened to a pre-dawn rendition of the national anthem.


The water was much warmer than the air so we were relieved to get in. We started first, and the other 1,300 participants waited patiently and cheered us on for our entire swim before they started.


My swim was pretty ugly for the first half. I tried to get into my rhythm that I developed in the pool. 4 strokes, breath, 4 strokes, breath…but it was not working. My breathing became really shallow and I kept running out and flipping onto my back. Then about halfway through I switched to a shorter breathing pattern. 2 strokes, breath, two strokes, breath. I started to sustain the rhythm and picked up speed. When I reached the dock I was pulled out of the water by some volunteers and carried to my chair on solid ground (same for the other two paratriathletes).


From the swim to the transition area is slightly uphill on grass. There was a carpet path but it was still pretty soft and uneven. I am not good at balancing on my back wheels in my chair so I lurched along laboriously up the slope. My arms were exhausted…plus, inching along in a race is a little demoralizing, but the path to the transition area led through all the athletes who were waiting to start their swim so the whole crowd was cheering and yelling stuff like “you got this” “get it done” “keep pushing”. I don’t think anyone likes to be patronized but it’s a little different when the comments are coming from other athletes in the same event, perhaps I felt like they were saying “we’re all in this together, let’s get this done”. I felt proud to be an athlete among athletes.

In transition, it was wetsuit off; shoes, shorts and jersey on, and get going!

I hit my stride during the bike. I was still pretty chilly as the sun came up and I dripped dry, but I kept a pretty good speed, relaxed a little and gathered myself for 10 miles.

Then it was madness again in transition. Switch shoes, gloves on, and go!…However it was a little anti-climactic as I inched along clumsily on the way out of the transition area. I straightened out and got a few full pushes in and started feeling ok about it. I made it through the exit without an issue, it was going to be the entrance on the way back that would be the hard part. Then I hit the bridge on the way out and slowed to a crawl.


After each push I would almost come to a stop as I inched my way up. Then I thought of what my 8 year old friend Gavin told me yesterday when he called to wish me luck “It doesn’t matter what place you come in as long as you finish” I relaxed and grinded it out and then I was at the top with a little downhill on the other side.

I inched my way through a few intersections in downtown Atlantic City while the kind policemen held the traffic for me. When I hit the boardwalk the first able bodied runner caught up to me and gave a few words of encouragement as he passed. A few minutes later more and more runners started passing and I was in the thick of it for the rest of the course. It is an out-and-back run course so there were runners passing from behind and approaching from the front. Almost every single person provided encouragement as I inched along the beautiful boardwalk. The only people who did not say anything likely could not because they were breathing so heavily but even that was encouraging…everyone was suffering together, a sufferfest!

On the way back I passed through downtown again and cars were backed up likely for miles while the cops held them for the runners. There was lots of honking, and yelling, one lady yelled from her window “We gotta get back to our lives, let us through!” the cop yelled back in a thick New Jersey accent “Lady, what do you want me to do? There’s 1300 runners here, gimme a break.” However as I passed, the honking stopped and people started yelling things like “way to go” and “don’t give up”. One person turned the radio up really loud during an inspiring U2 song as I passed. As I hit the bridge again I slowed to a crawl but I knew it was coming so I paused briefly, gathered myself and grinded it out.

I was about 1/4 mile away from the finish line when I had to cross an uneven spot with an upslope. I came to a stop as I popped my front wheel onto the plywood that had been placed to even out the potholes in the ground. As I pushed forward again my front wheel started to lift, and for a moment I thought it was all over. But I fought to keep my weight forward and the wheel made contact with the ground again. Another push and I was over the obstacle and back on the paved surface that would lead to the finish line.

During my approach, I soaked in the much appreciated cheers from the crowd and breathed a sigh of relief as I crossed the finish line.


I had done it! We thought of all the worst case scenarios, prepared as best we could, and when required, dug deep and pushed through.

photo (1)

Posted in Fitness, Sports, Triathlon | 5 Comments

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 | 2 Comments

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 | 1 Comment

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 | 20 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 | 1 Comment