How to Ride a Trike 62 Miles

Step 1, attend a conference in Minneapolis, MN where 225 of the most special people in the world, all living with or affected by myotonic dystrophy have gathered. That's what Spencer and I did August 13-15. Step 2, the next chance you get (which for us was the next weekend, August 20-23) get on your trike/bike, try not to think how far it is, and start riding until you've racked up 62 miles. Because of the first, we were able to do the second. There's a direct cause and effect relationship. Here's why.

Perhaps you needed to be in the room there in Minneapolis at the "Empower 2010 Myotonic Dystrophy Family Conference" to fully understand this, but I think the message was pretty clear: this thing called myotonic dystrophy has met its match. A bunch of determined, organized, and energetic people have found each other and won't stop working until there's a cure for myotonic dystrophy and the cure will be ASAP.

You could see it in the dedication of the great group of organizers who put the conference together and in the research docs and specialists who reported on their critical work. You could feel it in talking to the attendees, kids and adults and everyone in between, who are determined not to let myotonic dystrophy get in the way of their goals and dreams. But, perhaps most meaningfully of all, you could see it in the everyone's eyes. I talked to many, many people living with MMD at the conference. Every time, I saw determination and a commitment to do whatever is necessary to stop myotonic dystrophy in its tracks.

One of the most things most necessary right now is building on the research that has been done so far -- research that has tracked down the cause for MMD and is closing in on therapies.

Step 2, the 62 mile step, means so much more when you know you are in it with so many others who so determined. Step 3 comes in October in the Sea Gull Century. We will get there.

54 Miles and a Horse

We took Red and Spencer's road bike (I have named it Madonna) down to Charles County, MD on Saturday, 7/30 to see if we could crack the 50 miles marker in our training. Through Charles and St. Mary's beautiful countryside, we meandered up a down some rolling roads to and from Hughesville, MD and we did it -- 54 miles to be exact. I am still hungry.

Highlights of this wonderful ride include things you only see from the vantage point of a bike or a trike, including:

• Snakes -- I don't mind them, but some might coil up a bit at the sight of a 3 foot black snake of some sort enjoying a warm stroll across the road in front on me on Trinity Church Road in Charles County. Looked as if he was going from the corn field on the right side of the road to the corn field on the left. Probably going to visit a friend.
• Groundhogs -- Spencer, who travels ahead of me to the next turn on the cue sheet, met a friend of Phil's along the way. Friend-of-Phil was all decked out in a top hat and ready to hit the road himself. (That's not true -- really, the groundhog was wearing a brown leisure suit.)
• Amish Gentlemen, Horses/Buggies -- They all pulled out from a side road onto Budds Creek Road from the left and came up beside me. We smiled (the man and me, I'm not sure about the horse, although he looked quite amiable, too). Understand, please, that on Red-the-Trike, I am very low to the ground and, shall we say "laid back" a bit - so I am looking up from the under side of this horse at the man driving the buggy. I asked if I could ride ahead of him and his horse and the gentlemen, of course, understood why and smiled, wishing me a safe ride.
• Tasty Butterflies - A particularly beautiful one bounced of my glasses and then in and out of my mouth. Ahhhh buttterfly dust and a shot of Gatorade -- rocket fuel!
• Bonus Miles - Somehow, we managed to miss cues on the cue sheet and/or the cue sheet had a mistake in it -- a metaphor for life or what!? Whatever, in figuring things out, we managed to get in 2 bonus miles and my butt doesn't feel too much the worse for it.

The tales of the road, big happenings and small wonderments, and the time to think about them, are among the greatest gifts that come from riding a bike. Do you agree?

I Would Like to Introduce You to My New Friend - "Red"

My trike "Nitro" has introduced me to a new friend. His friend's name is "Red" and "Red" is a Catrike Model 700. Red and I rode together for the first time this past weekend down in Bethany Beach, DE where Spencer and I were visiting my Dad over the weekend. We rode a course very much like the one we will ride in the Seagull Century. I must tell you, Red and I liked each other at first sight.

Red is a bit scary, though. Red is faster, lower, and more of a challenge to ride than Nitro. That's because Red has a regular 29" bike wheel on the back, and two 16" wheels on the front. He looks like a trike version of a hot rod. All of the tires are skinny like road bike tires. Red's seat is set at a 27 degree angle, which is much flatter than Nitro's (which is set at 50 degrees). Getting a good view of the road is a bit more of a challenge. There is 2 1/2 inches of clearance between my bottom and the road when I am in the seat. The Catrike website says that Red is "...arguably the fastest trike in the world." And yes, Red is red.

In the heat last Saturday, I averaged 12.9 mph riding Red and I know I could have averaged 13 mph if I had focused on that average as a goal earlier in our ride. Compared to what a rider can do on a regular bike, 12.9 mph is slow. But, for me, that's an increase of about 2 mph in average compared to my average on Nitro.

Never anywhere in my mind did I think I would ever be riding anything ever again. Now, during my subway rides home from work, I catch myself thinking about how to get that average mph up a couple of more tenths of a mile. Hmmmmmmm.

Thanks for the introduction Nitro. I'd like to get to know our friend much better. I'll keep you posted on how this works out.

Sometimes the Ride You Want is Not the Ride You Get – But It Ends Up Being the Ride You Needed

Everyone knows this regular weekend multi-tasking family scene – go to the grocery, the cleaners, run errands, attend important events for friends’ kids, get dinners ready for the next week, mulch, wash clothes, get a case of beer, clean out the cat box(es), do the yard work, visit your 2-year old adorable niece, make fruit cups for lunches, pay the bills, ride 50 miles, etc. Your family’s specifics may be different, but whatever may be on your weekend “gotta do” list, trying to get it all done requires working at an “energetic” (to say the least) pace. We usually don’t get it all done, but somehow the most important things are dealt with and we feel very fortunate and thankful.

One thing we did not “get done” this weekend was the “ride 50 miles” item on our “gotta do” list. We wanted that 50-mile ride. It represents an important milestone to us in our training for the October attempt at a Century. A 50-miler is concrete evidence that we are half way there. Try as we might to do that 50-miler this past weekend, important things happened and it didn’t get that ride done – for now. We feel fortunate and thankful because a ride even more meaningful came our way.

Mid-day Sunday, in the midst of all this “gotta do” activity, Spencer suggested we try to get a ride of some sort in and offered the nearby Crescent Trail to Georgetown as a good choice. So, Spencer did most of the work to load up the truck, and off we went to the Crescent. Aiming for at least the Jefferson Memorial, we rode down the trail, through the train tunnel, over the Arizona Avenue bridge, by the Potomac, until we reached Fletcher’s Cove, where we came upon Kathy Carroll.

Mrs. Carroll had waved Spencer down to ask if by any chance, Spencer had seen a man in trouble any place on the trail. I had arrived by now and “No, we hadn’t see anyone in trouble.” Well, she couldn’t find her husband, she said. They are from Takoma, DC, you know, and ride the Crescent Loop to Sycamore Island or Fletcher’s Cove and then home to Takoma often, stopping to picnic. There was wetness in her eyes’ crinkles. The wetness was not sweat, I didn’t think.

Spencer sped off on his racy road bike back up the trail to Bethesda (about 5 miles) to look for Mr. Carroll. From Bethesda, Spencer called Kathy and me, waiting back at Fletcher’s. Nothing to report. Well says Kathy, Steve (by this time, I knew Mr. Carroll by his first name) fills his water bottles up with Starbucks coffee and smokes. He doesn’t have a cell phone. He may have had a heart attack. Her dear friend’s husband has pancreatic cancer, “don’t ya know.” She said she sure didn’t want to lose Steve. We had to wait until Spencer got back, he having taken another look-see ride back down the trail from Bethesda to us, to get any news.

So, Kathy and I talked. We talked about spouses (Steve is a graphics artist). We talked about yoga (she is a teacher). We talked about daughters (she phoned hers and asked “Becca” to call area hospitals). We talked about what to do next, 2 hours having elapsed since she last saw Steve (she called the police and put in a report). We talked about a musicale she had just produced to benefit “less than untouchable kids” in India ($4000 raised to build an addition to the orphanage). Spencer returned from Bethesda, again reporting no Steve sightings, and then rode on to Georgetown because Kathy said that “maybe Steve went to that Starbucks by the river to get a triple shot.” Kathy and I continued to talk as a way of, we both understood, cope with the tension. Intensely, she wondered out loud if she would bury Steve soon.

Her cell phone rang and she looked at it, but the late afternoon sun kept her from reading the number. She looked at me as if to ask what I thought she should do. I pointed at her phone. She looked at the sky asking somebody something (Was it Becca? Maybe Spencer … or the police? The GW emergency room? Steve?) Then, she opened her eyes very wide and tore open the phone.

“Steve! Where are you and do you know that I thought I might have to bury you?”

We will keep that 50-miler on the “gotta do” list for next week. Sunday, we felt fortunate and thankful for our ride.

.

The Three Covered Bridges 45-Miler -- Lessons Learned

Hi everyone in the Miles for Muscles listening area.  This week's post is about a beautiful ride out in the country and the beautiful person that made it possible. 

First, the ride.  It was the 45-mile ride from the outskirts of Frederick, MD to Thurmont, MD and back to Frederick.  The scenery was green and rolling and the trip certainly presented its challenges. Saturday was not hot like it has been this week here in DC.  While we did hydrate, hydrate, hydrate, staying hydrated was not much problem.  One downhill got me and Nitro going about 25 mph at one point.  I told the guy in the bike store that and he told me not to do that ever again.  Come to the bottom of that hill and any little nuance in the road could take my steering handles out of my hand, I was told.  I will need to control my "need for speed" I guess. If Spencer is reading this, he will burst out laughing.  He knows that I don't ride fast and never have.  

Which brings me to the beautiful person part.  None of this would be possible without Spencer Young.  I met him on a bike ride 8 years ago and we have been together ever since.  For almost 2 years, we have been married.  When I did not know what to do with the undeniable fact that I had myotonic dystrophy, he (I believe instinctively) took me to a bike shop to check out a tandem bike.  He wanted us to ride again and when I was too afraid to sit on the back of that tandem ("If I break something, it will probably never heal up, Spencer!"), we came home and he went out in our backyard.  He was so sad that he cried.  I didn't find out about that until later. 

Going into that bike shop, though, got my bike juices flowing just a bit.  He doesn't know this, but I took my bike (a regular one) out in our neighborhood, tried to ride it, couldn't hold my head up high enough, couldn't work the hand brakes, and finally ran it into the wall in our back alley.   I was laying on the ground on my side, wondering if I was in one piece.  I got up and I was mad.  I wanted to rip this myotonic dystrophy toxic RNA crap right out of me, throw it in the street, ride over top of it, back up, and then let it have it again. 

What a concept.  It was about a year before I discovered trikes.  After looking at them on line and talking to the guy at the bike shop, I asked Spencer to go with me to see one on a Sunday afternoon.  I think he immediately knew what I had in mind and he was totally for it without anything being said.  Understand that I cannot lift a trike.  I cannot put one in our truck.  It takes me 20 minutes of struggling to get a trike on its side and out the basement door.  If it gets a flat (and of course it has 3 tires so the odds of getting a flat are 1/3 greater that with a bike), Spencer has to play a major role working the tools to fix it.  He fully realized all of this right from the start and, still, he was totally for it.

As we rode together through the Maryland countryside last Sunday, I was certain that I was going to ride the entire 45 miles.  I was certain I was going to ride all 45 miles.  Spencer rode ahead and I met him at prearranged points and I was sure that I would get to where he was.  I let it rip on that hill last Sunday and hit 25 mph.  If I had wiped out and broken something that would not heal up, Spencer would be by me no matter what.  Knowing that makes it possible for me to ride.  I love him for it. 

But I think I will try to keep it under 25 on the down hills.     

Hi Everyone --- Whoa ..... was it hot today or what?  Spencer and I did 40, taking the long way to National Airport and back.  We need to get out into the country and ride, though.  Bike trails are wonderful and we have some great ones around here.  But, to do more than 40 miles and get a good idea of what my average speed is going to need to be in October, we need to go out and ride some routes on country roads.  

Remember ---- hydrate, hydrate, hydrate.   And don't just drink water, but include some sport drink to keep everything in balance.  I detest Gatorade but I gotta drink it or I don't feel so good on a hot day like today.  

A big welcome goes out today to new rider Bill Hanson from St. Louis.  Bill has experience in going the distance on some long bike rides and he is joining up with the Fernandez, Manrique, Hanson Team to help cure myotonic dystrophy.  Welcome Bill!!!!

Thought for the day --  some times when things look and feel tough, just go for a small win on anything.  Savor it for just a small moment and then go for another small win.  Before you know it, you've ridden up that climb from Georgetown past Massachusetts Avenue to Bethesda -- about 3 miles steady up hill.   

Thanks for the opportunity to do that and to try to make a difference in the process.

You all are golden,

Mike

Hi everyone and we hope you are having a great Sunday so far.  This is the kick off blog for this year's Miles for Muscles ride.  We hope to be sharing stories and information, anecdotes and discoveries as we progress through the summer training and preparation season - looking toward the October 9th ride.  

We call it a ride, but already the 'Ride" has morphed into more.  Some participants have decided to be crew members -- supporting the event with their fundraising and help when we hit the longer training rides.  Roger Fernandez and Lynne Manrique has embarked on a series of hiking adventures that will take them 100 miles over the course of the summer.  We hope they will join us at the ride that starts in Salisbury on October 9.  

More riders/crew/hikers, et. al. are on the way.  Bill Hanson from the Richmond, VA area joined the Ride this week. Welcome, Bill!   We know we have 3-4 riders about to register and the outreach efforts we have mounted will produce more.  We are linked to several bike shop sites and Faeebook pages.  We have introduced ourselves to the local media and businesses where we think participants and support have potential.  Your ideas for ways to promote our work would be great --- so share your ideas on the blog or email me at mikehamlin1@comcast.net.  I will talk to anyone if you thing that would be helpful.  So, please just let me know if that would help. 

For me, the commitment to a cure grew even stronger with a report this week from my daughter, Erin. Her genetic test results show she does not have the trait on chromosome 19 that causes myotonic dystrophy.  Great news!  But also ...  stronger resolve than ever to do what is needed to get a cure for all the kids and adults with myotonic dystrophy.  Erin is a crew member and will be supporting the Ride in the Hampton, VA area.  

Dr. "Mani" at UVA and other researchers are nearing that cure and our help can make the difference.  It's in the 90s here in DC today and I'm headed for my trike to take a training ride. Later, we're going next door where Crew Member Mary Ellen will help us pound some pasta. 

So, it's a happy day indeed.  Take care and thanks once again. 

Mike

202-277-8537

mikehamlin1@comcast.net