got chewed out today, probably rightly so

This is kind of interesting. I got totally chewed out today, probably appropriately, via-e-mail by a reader who was mad about all of the cake I stuffed in my face after Thanksgiving (and my birthday).

For those of us with MS, we know that there are certain schools of thought related to nutrition and the value of eating certain things and not eating certain things. To be honest, I've never really put a lot of stock in it. I'm doing pretty well with my condition and tend to think that has more to do with positive attitude and luck than anything else. But I'm going to look into the sites my new friend suggested. I figure there's always a lot for me to learn, and I'm ready to give anything a chance.

Here's the e-mail from Rosa. Honestly, I really appreciate the concern...


Hey, I have read about your Thanksgiving. It's a shame to see that you eat cake. It really makes me sad that people with MS think they can eat whatever they want and then they wonder why they have symptoms. I'm 31, was diagnosed at 29 and have little to no MS symptoms. I'm not on any MS drugs and live by the SWANK diet. I dont eat meat, I eat as little saturated fats as possible and feel terriric.

You can see how I use my limbs on drums too. www.myspace.com/thejanuarysI also write a bi-monthly article on http://swankmsdiet.org/index.php/diet/day_in_diet/In it, I talk about life dating, eating well, staying positive.

I also write the realities of our fears and how it can be challenging to stick to the diet. I recommend it for everyone, especially for you. Have you heard from any of the news stations in NYC that you have emailed? The studios are about 3 blocks from me sinc eI work in Times Square.

Peace and Purple,

-Rosa

Training Update

Hi Y'all!

I rode over 23 miles this morning and did a full 2 hours, which is probably where my daily training regimen will stay. Soon I'll try my first 50 mile and eventually bump a weekly ride up to 100 or so. Man, this is not good on the butt, you know? And this morning I had parts of my body fall asleep that I did not know could do so.

I have a couple of different bosses, and have now told both of them about the bike trip. One of them thinks it is cool and the other thinks I'm nuts, but is supportive (under protest, she says). Mom is also coming around, as much as possible. Yes, I realize this is nuts, but isn't that what life needs to be about sometimes? If not, why do it? Why can't we dare to do something bigger than ourselves? To be honest, I don't even know for sure if I can make this trip, but things continue to go well and I'm for damned sure going to do my best.

Peace out.

- sean

The National Society

Yesterday I had a great talk with Betty Ross at the National Multiple Sclerosis Society. She had some great feedback and asked questions that made me think. They are doing such great work there, ya know? I'm very excited about working with the staff at the national society on this little project, as well as those with local chapters.

Post-Thanksgiving

Man, I've eaten like some kind of half-staved freak for about five days now. It was, honestly, as though I had never see food before. I put on eight pounds (most of it cake, I'm fairly sure). This is definitely not how one should train for a 1500 mile bike ride.

I spent the holidays at my mom's house in Kentucky, and most of her friends are doctors, so I got lots of great advice from many of them. Mom keeps hoping they will tell me I am stupid for wanting to ride from Kansas City to New York City -- because it is unsafe, because I have MS, whatever -- but they just keep giving me information to help me do it safely. It was a very encouraging weekend.

By the end of the week, Mom was starting to get into the groove, though. She's starting to think of ways to be helpful. Yay, Mom!

- sean

Sean Spence
MS Advocate
www.MissouriToManhattan.com
seanspence@earthlink.net

Message from Jackie Mitchard

I heard back from bestselling author and national MS ambassador Jackie Mitchard yesterday. She was very encouraging and wants to be helpful. I'll be keeping her posted as the ride develops. It is such an honor to have someone of her stature - someone who has done a great deal for the MS community - interested in "Missouri to Manhattan."

Thanks, Jackie!

David Lander

I e-mailed David Lander yesterday (www.davidlander.com) -- you know, the actor who portrayed Squiggy on the "Laverne & Shirley" show? Lander was diagnosed with MS years and years ago and has been a wonderful ambassador for our community. I received an automatic reply from his Web site that said he reads all e-mails, personally. We'll see...

Planning the trip

Hi Y'all!

One of the great things about holidays is the downtime to think. Sure, I spent a lot of great family time, but there was still time to plan my little project.

Among other things, I was able to lay out the primary stops on my trip.

Here they are:

Kansas City, MO
Columbia, MO
St. Louis, MO
Springfield, MO
Decatur, IL
Chicago, IL
Indianapolis, IN
Dayton, OH
Columbus, OH
Pittsburgh, PA
Harrisburg, PA
Lancaster, PA
Philadelphia, PA
New York, NY

Most of those cities have affiliate offices for the National Multiple Sclerosis Society. I think today I'll start contacting them in earnest.

- sean

Telling Oprah about my trip

Today I've e-mailed Oprah at her show. Keep shooting for the stars, right?



Dear Oprah,

I've just decided to add Chicago to the route of my 1500 mile bike trip, benefiting Multiple Sclerosis.

Here's my story, I'm 36 years old, working as a political consultant all around the country. Very active (although, about 50 pounds overweight, so maybe not quite as active as I like to think!). A few years ago everything was going great, except that I'd been dealing with some on again/off again numbness and weakness in my legs. After way too long, I finally went to the doctor and was pretty quickly diagnosed with MS (at which point, my mother said, "I told you you had MS, if only you had listened to me!). Aren't mothers fun sometimes?

Anyway, for some reason that I really can't explain, I've decided that living my best life includes riding a bicycle from Kansas City, Missouri to New York City, primarily as a benefit for the National Multiple Sclerosis Society and its local organizations. Slowly, people I'm contacting along the route are starting to volunteer to help. As you'll see from my blog (http://MSCyclingSaga.blogspot.com) I've started getting some folks interested there in Chicago, so I'll be swinging up your way and stopping by the show (maybe I can even score a couple of tickets -- hint, hint).

My trip is scheduled for some time in March, around National MS Week, and I'm training as hard as I can until then. I'll keep you posted. Please let me know if you hav any thoughts or questions.

Thank you for your time and consideration; please let me know every time I can be helpful.

Sincerely,

Sean C. Spence
MS Advocate
http://MSCyclingSaga.blogspot.com
seanspence@earthlink.net

Training Update

This morning I rode 21.6 miles. See, it is all about making a little progress every day.

Of course, that's easy to say right now. To do this, I'm going to need to ride about 100 miles a day for something over two weeks. Oh well, one step at a time.

- sean

Training Update, route decision

I'm up to 18 miles in 90 minutes now -- technically a new world record.

"The farthest distance on a stationary bike by a Sean Spence."

Yeah, I know it is all kind of silly, in a way. I realize that 18 miles is not a big deal. But life is about small steps. It is about improvement and just moving forward. That's why I'm doing this, to remind others and especially to prove it to myself.

By the way, now that Al Golin (www.GolinHarris.com) wants to help, I'm definitely going to Chicago. Sorry, Mom, that means no swinging by my hometown of Madisonville, KY.

Just heard back from Al Golin

Oh my gosh! I'm so excited!

I just received an e-mail from PR Giant Al Golin (reference a couple of posts ago) of GolinHarris (www.golinharris.com) and he wants to help with "Missouri to Manhattan"!

Okay, I'm now, officially, going to stop referring to him as "PR Giant Al Golin." Now that I may actually get to know the man, it might get a little embarassing.

I don't think he'll mind me quoting his short e-mail response, "Sean, I'm out of the office until the end of next week, but we'll be happy to help out with your exciting project. I'll speak to you about it next week. Best regards, Al."

Al, if you are reading this, please know how much this means to me. I firmly believe we have an opportunity to do something very cool here that can have real impact on folks who need it. Thank you!

Let's hope this is just the first in a long line of successes. With a little luck and a lot of help from people like Al Golin and the good people at GolinHarris, we are about to do something special.

- sean

My first contact with the MS Society

Hey Y'all!

I just had a lovely conversation with Kris Rauh, Director of Development at the Mid America Chapter of the National Multiple Sclerosis Society. She seemed pretty excited about "Missouri to Manhattan" and I think we'll be talking a good bit more in the coming months. Part of my goal is to help individual chapters leverage this event to raise local money -- and I'm betting good folks like Kris will figure out ways to do that.

In the coming weeks, I'll be contacting other local folks along my intended route, as well as the national society. I'll keep you posted.

- sean

My Letter to Al Golin, PR Giant

Here is my letter to Al Golin, one of the giants of the PR industry. He is chairman of GolinHarris, one of the largest PR firms in the world, based in Chicago. He's also involved in the fight against MS and advises the National Multiple Sclerosis Society on PR issues. My hope is that he'll want to take on my little bike ride as a project for his firm. We'll see...




November 18, 2006



Mr. Al Golin
GolinHarris
111 E. Wacker Drive, 11th Floor
Chicago, IL 60601

Dear Mr. Golin,

First, thank you for your long-standing commitment to the fight against Multiple Sclerosis. Like you, I am an MS advocate. You might be interested in knowing about an incredible – perhaps foolhardy – project I am undertaking.

In March, right around National MS Week, I will leave Kansas City, Missouri on a 1,500 mile bicycle ride to New York City (on a route that could easily include Chicago).

Now, to me, this seems like a pretty massive undertaking for anybody. In my case, we should note that I’m probably 50 pounds overweight and mildly asthmatic. Oh, and did I mention that I was diagnosed with MS a few years ago?

All that said, this is something I can do. This is something I can do to remind the MS community that we must move beyond our limits. This is something I can do to remind the rest of the world about MS and hopefully motivate a few to join the fight. This is something I can do to raise money for our cause.

So Mr. Golin, I’m asking for your help. Not asking for money. You and I both know what you and your company can do for this project if you choose. So let’s have a conversation about it. Please consider joining my little crusade and putting the weight of your firm behind it.

Please have a look at http://MSCyclingSaga.blogspot.com and I think you’ll see that this could be an awesome PR project.

I look forward to hearing from you.

Sincerely,

Sean C. Spence

Training

Have I mentioned that I don't even own a bicycle? I bought a stationary bike a little over a week ago and have been training diligently. I'm already up to about 15 miles every morning, which takes about one hour and twenty minutes. The goal will be to bump that up to 24-26 miles in two hours, and do that every day. Starting in a week or two, I'll also start doing an extended ride once a week, probably 50 miles or more.

Telling Montel about my trip

November 18, 2006



Mr. Montel Williams
The Montel Williams Show
433 West 53rd Street
New York, NY 10019

Dear Montel,

Like you, I have been diagnosed with Multiple Sclerosis. Kinda sucks, huh? But we keep going and life is pretty cool anyway, isn’t it?

It is cool. And we do keep going. And those of us who can do more have a responsibility to do so. That is something I’ve admired very much about you and the way you’ve dealt with your MS. You’ve set an example for the rest of us. Through your show and in so many other ways, you remind us every day to make the most of what we have.

In my own small way, I try to follow your lead. To the best of my ability, I live my life as an ongoing effort to remind others – and especially myself – that we must push beyond our limits, no matter what they may be or how hard it is.

With this in mind, I am preparing to ride a bicycle from Kansas City, Missouri to New York City. My primary goal is to show others that even a fat guy with MS can do something extraordinary. The trip will also be a fundraiser for the National Multiple Sclerosis Society and I will solicit money from businesses and individuals along the route and nationally. On both fronts, perhaps my trip will impact many lives for the better.

No, I’ve never done this kind of thing before. I’m 36-years-old, more than a little overweight, and, to tell the truth, I get a little gaspy climbing more than four or five flights of steps. As of today, I don’t even own a bicycle. Just last week, I purchased a stationary exercise cycle and am training diligently.

By March, I will be ready for my trip, but I may have to wait a few months for job reasons. Either way, I will keep you posted. Hopefully, I’ll be able to score a ticket to your show – you can certainly count on me to try.

Take care, Montel, and please let me know every time I can be helpful. Thank you for all you do.

Sincerely,

Sean C. Spence

Training

Okay, if I'm going to bike 1500 miles, I'll need to train, right? So far, that has entailed buying a stationary bicycle about a week ago. I rode it one hour every morning for the first week (about 12 miles) and now I'm adding 10 minutes a day for a while. The goal is to get to two or three hours every morning. Then maybe I'll take a really long ride once or twice a week.

No word yet from Meredith Vieira -- I've e-mailed and snail mailed a letter -- but I'll send her another next week. My guess is that she's reading my letter over and over again, carefully crafting her response in her head. I'll let you know when I receive it.

- sean

Sean Spence
MS Advocate & Founder, SharingOurDays
www.SharingOurDays.com
seanspence@earthlink.net

Letter to Meredith Vieira, Today show

November 15, 2006



Ms. Meredith Vieira
NBC
30 Rockefeller Plaza
New York, NY 10112

Dear Meredith,

Like your husband Richard, I’ve been diagnosed with Multiple Sclerosis.

I want you to be among the first to know that I plan to ride a bicycle from Kansas City, Missouri to your New York City studio in either March or June of 2007 (I’d like to do it in March for National MS Week, but timing will depend on potential job changes). The purpose of the trip will be to benefit the National Multiple Sclerosis Society, as well as local chapters of the organization. To that end, starting in January, I’ll be soliciting pledges from individuals and businesses all along the route and around the country.

Now, I’m sure you are thinking that I’m an athlete or perhaps even a superhero of some kind. But no, I’m just an ordinary 36-year-old guy… kind of a fat guy, actually… and I have bad knees… and a bad back… and just a skosh of asthma. Jeez, I’m really kind of a mess!

Okay, all of those things are true, but I’m not a mess. As I said, I’m just an ordinary guy; and I know you agree that ordinary people can do extraordinary things. In fact, I think we MUST do extraordinary things and that is why I’m making my trip. People with MS – and pretty much every other kind of people – need to be reminded that we must find ways, must create ways, to rise above our limitations every darned day.

So I’m going to bike 1,500 or so miles and stop in for a visit there at Today. Perhaps we’ll get to chat, or maybe I’ll just wave through the window. Either way, I’ll keep you posted as I train and prepare for the trip.

Take care, Meredith, and please let me know every time I can be helpful.

Sincerely,

Sean C. Spence

E-mail to Becky, my best friend and partner

I've decided to bike about 1500 miles -- from Kansas City, Missouri to New York City. The trip is part personal quest and part fundraiser for the National Multiple Sclerosis Society. My story will unfold through this blog over the next several months, while I train. Many of the entries will be letters I send to folks, letting them know about what I will be doing. Here's the very first official communication...


Hey Honey,

I've drafted a letter to Meredith Vieira at Today and thought you might like to read it before I send it. If you have any thoughts or questions, I'd love to hear them. I've decided just to make this whole thing work, ya know? Life is short and hard and we have to choose to strive for greatness. We have to do things bigger than ourselves. That's the kind of life I've tried to live and that's the example I want to set for our kids. So it just needs to happen and there's no reason to postpone the decision. Don't you think?

I'll send the letter this afternoon, once you've had a chance to review.

I love you!

- sean