Daily Life (MS doesn't affect rudeness)

Okay,

Many of my fans have been putting on the pressure to pump a story out, so here you go. Not necessarily related to MS, but definitely part of my life.

You decide which is more rude.

I was quite disappointed that my favorite Kansas City BBQ place was closed, so I begrudgingly went to my 2nd favorite place. Only room for one at the bar. And it was an awkward table, a high top at the bar, and at an angle, so I wanted to sit on the other side. I went to scoot-in and the person whose chair I hit when I tried to slide into mine, would not move. He acted as if I were not there. It looks like they sent a clear message. Don't sit there. I am not moving. So off to the other side of the awkward angle part of the table. My right hand side and leg were sticking into the hallway.

I took a good look too. The man who's chair I bumped (but didn't move) had plenty of room to scoot-in. Feeling awkward and not yet having the guts to confront the couple, the bar opened up, so I quickly moved to the end of the bar.

Thinking it would be a while for my order to come up. and being by myself at the bar, I flipped open my laptop and began to get back to my blogging. Blogging a dinner during edits I have just resolved to be rude. However, back to my growing discomfort with the situation. All of a sudden, I hear the couple at the "incident" table say how rude something was. I am sure, it was me. I also heard "going into a full restaurant yada, yada, yada. I tried to give, what I thought, were... who me glances? towards them, but couldn't confirm whether or not they were talking about me. It was noisy, and you know. I am just sure they were talking about me.

So, what is more rude? Not being a kind citizen of the earth and saying excuse me, and moving your chair in a couple inches?

Or??????

Having dinner by yourself at a restaurant bar and opening up your computer?

Let me know.

I did take a phone call later, after they left, and with my laptop open. They were long gone. Actually, being by myself, I didn't consider that too rude.

Let's just all get along. If the restaurant is a bit crowded, and tables are close, acknowledge the person simply just trying to sit down. How about a symathy scoot? And maybe scoot a 1/4 inch. At least act like you give a twelve cents about fellow humans, rather then completely ignoring them like I am with my face in my computer.

This is mymsdouglyon paying the bill and getting out of here!

Rain Rain Go Away

This year’s Motorcycle Ride was great fun, and quite a challenge. I was thrilled to join my fellow MS Camp Volunteers Cari and Steve for this years ride. We had a great time preparing for the ride Friday evening. They spent the night with Steve, myself and Henne and Fargo, so we would get a fresh start Saturday morning.

My biggest challenge Saturday was deciding if I would ride. Not having that much experience put in on a motorcycle was one thing. The forecast for rain added to why I was uneasy. Those watching the news this weekend, know about the rainy conditions in southern MN. I was going to make a decision at the start at the Minnesota state capitol. Despite good weather reporting, good judgement, no rain gear, and some other folks saying don’t do it…..I was going to do it. Cari and Steve also had to this date when they rode together, good weather karma. She said when ever they have rode before together, they have not ever gotten wet. What is the worst that could happen?

About 40 minutes into the ride, we did get our rain. There was no, getting ahead of it, going around it, or just being lucky. The chemistry of the third rider, me, must have messed up the “no rain’ karma possessed by Steve and Kari.

Everyone of us riders in the River Road Run are safe. Despite the rain, flash flooding, wet conditions and damage done over the weekend in Winona, MN and the Lacrosse, WI area I did learn a few things

In a couple of weeks, I will be following up to everyone with a copy of my Ambassador of the River Road Run Speech. I have received many accolades from independent sources that I was inspirational, motivating, and upbeat. So I am proud to have been successful as ambassador for the MS Society. Thanks again to everyone for all of your support.

Ambassador Speech MS River Road Run 2007

As you know, a motorcycle ride can be a journey unto itself. But hopefully by now, you also realize that participating in the River Road Run is also quite a journey. Yet, I’m here to tell you about my personal journey, not only with you on this ride, but also with the devastating disease of MS.

Five years ago, I spent a weekend with the Motorcycle Riders Safety course just to get my motorcycle license. I was excited to finally meet this goal, and just get on and go.

Then, four years ago, I was diagnosed with MS. While I had no choice, I was about to start a very different journey – one that I was not looking forward to. But I was determined that just like a motorcycle ride, this was a journey I just had to get on, hold on, and go somewhere.

At the Minnesota motorcycle show that winter, I met Michelle Meher, and Reggie…….. After a brief discussion of my diagnosis, doctors, - neurologists, and motorcycles, I took a brochure for the River Road Run. I was excited that the two paths in my life could converge as I was planning to go on this ride…. despite the fact I didn’t have a motorcycle.

Seven months later, it was riding day. With a loaner bike from my friend, excitement was at an all time high. I had never been over 45 miles per hour, nor had I ridden a bike for more than a couple of hours at a time. My goal was to raise over $2,500. That year, my first year, friends, relatives and their friends donated more than $10,000 to my humble efforts. And I met a lot of incredible people like you who were equally committed to fighting this disease.

Because of the incredible thrill I experienced, I committed to ride again the next year, and was even more excited that 2nd year. Not only did I now have a friend to ride with me, my friends and family rose to the occasion by donating more than $12,000.

In 2006, I thought that it may be my last year of fundraising. For some reason, I lost the excitement of the journey. I would later realize, that just because you may not have the excited feeling, it doesn’t mean that ride could turn out to be the journey of a lifetime.


While I didn’t start last year’s ride on a motorcycle ride, I was struck by the promise of ending the journey by riding into MS Camp. Little did I know it would become a life-changing journey for me, but equally important to the folks at MS Camp, too.

I called my friend, hopped on the back of her motorcycle and we crossed the finish line at Camp Courage. Yes, I felt a little weird. I didn’t actually ride in the event, but I still reached out to all my friends and family for their support. Little did I know that like all of you who crossed that finish line, I’d be enthusiastically cheered by the courageous folks at camp who thanked us as we rode in.

The memory from that journey that stuck with me the most is a woman named Michelle, one of the campers who had prepared a heartfelt thank you for all the riders’ efforts. She told how the disease progressed to where she could no longer care for her young children. Instead, she needed help from them.

Then I saw Doris, whom I helped with her lunch plate. Moments later, I lost it when she struggled to get her food to her mouth. I was down for the count. No, it wasn’t because of my own MS diagnosis or that this could one day be me. No. What really hit me is the fact that this disease does incredibly devastating things to perfectly decent fellow human beings.

This journey made me realize that regardless of how much money I raise, I’m doing something very important for many people living with MS. In fact, one of the many friends who also lives with MS told me that my “success” made her realize how important it is for her to do something. She might not be able to experience the same journey, but she could contribute and support our MS efforts.

Last May, I volunteered to help at MS camp. It was an amazing experience for me. But to be honest, this was one ride, I really did not think I could complete.

Yet, I ultimately had an amazing week at MS Camp. It was not easy and it is quite an emotional experience. However, I met some exceptional people – ranging from the selfless volunteers to the truly unique individuals with MS – and I had a great time. Come next May, you will find me back at Camp Courage.

And, if I may, I want to invite you and, in fact, strongly encourage you to make the effort to complete your journey by crossing the finish line at Camp Courage tomorrow. It may seem like a little effort, but it is so important to the many people we are helping.

In conclusion, I was excited to learn last year that I was not the top fundraiser for the MSRRR. It wasn’t for a lack of trying on my part. Instead, I was thrilled that new life is continually being infused into this ride, our shared journey.

Whether you are the top fundraiser or you’ve simply wanted to enjoy the journey, I want you to know that supporting, encouraging, and congratulating everything each and every one of us do in this event is what matters to everyone living with MS.

As the Ambassador of the 2007 River Road Run, I want to thank you for being here. You have made a difference, and we have made a difference together. Here’s to continuing this journey together until we bring MS to the end of the road.

Everyone is joining the movement

Many people have joined the movement. My college friend Mike Beck recently participated in a MS 150 bike ride in Colorado. Read about why he did this by clicking here

My friend Todd Zabel participated in the Minnesota event. He and his team met their goal!

MS Camp MyMS blog

Welcome fundraising friends to myMS blog. I have several loosely connected articles about my MS experience, MS Camp, and some musings on health care in America. Since I have directed so many of you here to have a look at this site, I thought I would connect the dots. You will find as you scroll down, some of the articles I have written. And for those who know me, seeing the loose connections, random sometimes senseless disconnect articles and thoughts, you are merely saying, yes, this is the Doug Lyon we have come to know.

Many people with MS lose the ability to walk, eat, or care for themselves in other ways. Some of you may simply just think or say to yourselves that my behavior is typical of someone with MS. However, 1) given my disclosure about how little the disease is affecting me...(just about 5% of my vision in the left eye, optic neuritus) and 2) those knowing me for over 5 years (or 5 minutes) know that it is not the MS causing the behavior. It is just Doug. So welcome to my blog. Scroll down for a look at the smattering of my thoughts on camp, MS, managed health care, and feel free to comment. Please participate in my survey as well.

2007 MS River Road Run Motorcycle Tour Ambassador

Doug Lyon, ambassador for the 2007 MS River Road Run Motorcycle Tour, believes it’s the little things that really make all the difference. “What everybody does is important, whether they are the top fundraiser or raise $200,” Lyon said. “We’re not all necessarily extraordinary people. We don’t need to do extraordinary things to help people. Little tiny things make a difference.”

Lyon was diagnosed with multiple sclerosis five years ago at the age of 38, just three years after getting his motorcycle license. After meeting MS River Road Run participants at a motorcycle show in Minneapolis, Lyon, who doesn’t actually own a motorcycle, decided to do something about his disease by taking part in the MS River Road Run. In Lyon’s first two years, he was the top fundraiser for the tour raising $10,623 in his first year and $12,000 in his second year.

Lyon borrowed a friend’s motorcycle the first few years, but said he loves riding so much he may purchase his own soon.

This year, in his fourth MS River Road Run Motorcycle Tour, Lyon encourages people to do whatever they can to make a difference. “MS strikes people in many different ways,” Lyon said. His inspiration as this year’s ambassador is the importance of the little things. “It’s important for people to tell their story of how they deal with things to inspire others.”

Is this an oxymoron? "For Profit-Managed Health Care"

I respectfully am making an inquiry based on some information I have been thinking about lately.

I have MS, and last week was a volunteer for the MS camp at camp courage. Helping those who cannot help themselves certainly makes you think about health care and its future.

Good health care is something that so many people don’t really seem too concerned about unless they are in poor health, or don’t have good health care. I am lucky. I currently do have quite good health care. I also don’t need many special services at this time.

I find that there are too many healthy people not thinking about this issue because they are not sick or in poor health. When it matters, it may be too late. In fact, I probably was one of those people. My opinion too, is that too many people don’t think we need to change our health care system. Again, because they don’t need it, or they are healthy.

Besides keeping in touch with my legislators, I was wondering if you had any advice or suggestions on what a concerned citizen could do to affect change on our health care system.

I also would like an opinion too on my thoughts against managed health care. I know corporations are powerful and good institutions, however, I do not believe, anymore, that the health of a society should be associated with any type of “for profit” organization.

I do believe doctors who have studied and excelled in their field should be well paid, but not a bureaucratic person or organization who manages an individual or group of individual’s health.

Am I misguided in my thoughts or just uninformed? I would like to think that a governmental organization or a non-profit organization professionally managing my health care with support of my physician would make better decisions for me than a for-profit organization.

Now I also realize that people with more money will be paying more for better doctors and services. I do think and know that the more money individuals have, the more they are willing to pay for superior health care. But I also believe that the general health of a population should have a high-quality option that would keep an eye on costs and say no because something does not make sense, rather than say no because it would erode profitability.

Please let me know if you have any comments or suggestions.

The one week career

I didn't realize it until I spoke to a friend who has been in her new job for about 8 months, but the camp cycle is similar.

I interviewed and had a background check to make sure I was not a murderer, molester or such, and to make sure I was a good candidate. Do you feel that you could do all of this? Yes.

Before you start your job, you get intense training on how to be successful, work with your new team, and campers, and how to properly perform tasks. They call that orientation. Then there is the peer training, where your fellow volunteers scare the crap out of you the night before the campers arrive on what camp is actually going to be like.

So after the first week of the job, you are wondering if you will ever be good at, excel at your job, and if your peers will ever respect you for the job you are doing.

In one week you go from orientation to productivity to performance review. Not much time, but I can honestly say...."I love this job!"

This is MY MS
Doug Lyon

Back from Camp

Sunday is here and I returned home from camp on Friday. The littlest thing set me off into a city wide quest of Minneapolis for some non-emergency advice. It didn't happen until after a nice dinner with my friend Roseann. Where there was a 6 year old, or so, running around the table shouting "let's go, let's go, let's go, let's go........... let's go...." and I reponded, "Let's shut up!"

Camp frazzled that knowing nerve, of what is important, bratty kids and ladies who have been up from the table behind you 6 times answerng their mobile phones, or the fact that you helped people you didn't know, who could not feed them selves or walk across camp. And it was amaing because I can confidently say, I am actually proud of myself because I was able to do this.

So, back to the police. someone parked in my parking space. Of course I could let it go. But suddenly, I was energized to see this through. Important thoughts of theft lead to bodily injury, which I could not fathom. So, some other less vengeful revenge had to be considered. But quickly led to a polite note on the front door of the building the next day. So on a dog walk, I at first, on my search for the police, to ask if vandalism, or theft, or any action to the car can be considered legal, since they were trespassing?

No posted signs for "your car will be towed...... if..." So the car could not be towed. I was powerless. There was nothing I could do. So I consulted with folks I saw on the street. The first one, look at my luck, was a lawyer. A litigator. She of course said she would support me.

I then found myself asking many of the fine citizens of Minneapolis what they would do? The last gal I asked, said: Let it go? It is a beautiful Friday night? Why sweat the small stuff? And I said: "That is the best advice I have received all night."

This My MS - less stressed out 2 days later.
Doug signing out. - Thanks to Esther.

MS Camp Volunteer Day 1 May 5, 2007

Lots of rules today. Our initial orientation was about everything we will be seeing, doing, and what we need to be successful. Lots of experienced volunteers here too, who have all gone out of their way to make sure us new volunteers feel welcome and comfortable with what will be happening.

I was trained on “Transfers and Lifts” how, with the Hoyer lift, to help those who cannot walk. It allows them to be able to lift people properly and safely with those machines. Also the whole safety and liability stuff. What is appropriate or not and the etc.

Our cabin meeting this afternoon was a discussion of the 11 campers who will be with us, their level of disability, meds, allergies, and everything about their MS. I also appreciate as I am writing about my experience too, how everyone is confidential, and rightly so, about privacy of the people, their treatment and or specifics of care. There is quite a premium on making this a great positive experience for everyone.

This is Doug Lyon MY MS

Why I'm Going to MS Camp

2006 River Road Run
A short novel by Doug Lyon

This year was different. I wasn’t looking forward to it. It seemed my third year of fundraising was a toil and a huge effort I was not looking forward to. Not having a motorcycle yet, makes things a challenge. Not for the ride, but friendships too. So, when you least expect it, and at your least motivated, you buck up, and do it. You find out some things you like least about yourself and your best friends but realize still you can discover the true meaning of Christmas.

So the story begins. With in 2 months and 2 weeks, I worked with my last year riding mate, Jayne (who raised over $2,000 last year) to get properly insured on her bike. Didn’t happen. I was thinking about renting, but decided to not ride a motorcycle. I could go down with the MS staff and help with check-in of the riders… and I did. I rode with Michele Mehrer.

Ghost of Christmas Past
I met Michelle a couple of years ago, and I want to tell you a short bit about her. She has MS. Seven years ago, she walked with two canes. Five yeas ago she needed a wheel chair to get around. She is an amazing person. She works and has her own business.

She is fun, has a great attitude, personality, and is friendly as a person can be. It sounds like I am trying to set her up with a nice boy. Michelle very much makes people feel comfortable around her.

We rode down with her to Lacrosse, WI, in her van that has been made assessable for her with a hand break and accelerator. She has an automatic seat that slides back so she can maneuver to get on her wheel chair, open up the ramp, and go. Actually, the state of MN has grants available to people who work and have a disability. She gets assistance for her mini-van, and some other things related to helping her to continue to work.

Michelle can’t move her legs, and now wears loose pants that pull up under her legs so she can use the material to help her to lift up her legs. So, her life is normal; pretty much, but not. Flying and travel is difficult. She drives around just like us, and works, and owns her own house.

Michelle also has a pump inside her the size of a hockey puck which pumps muscle relaxers directly into her spine to distribute them. She suffers from painful muscle spasms and needs a constant dose to manage pain. She is also on “uppers” of course legal, to keep her awake and fight the fatigue MS gives her. That keeps her up, and she can feel the elevation in her heart rate as well. The pump I told you about is in her, not attached; it is surgically installed to constantly manage her pain. It is a really cool piece of technology. Something you wouldn’t know much about, unless you or a friend needed it.

But to meet her once, and say hello, all you would think is that she doesn’t walk. You would think she is perfectly healthy. She is otherwise normal. Actually, she is. By the way, I am glad I rode with her. It was great to get to know her and more about her life. She, like you and me, is just matter of fact, matter of life; this is what is what my life is like. She is still living it.

Ghost of Christmas Present
I get the award. The family arrived before the banquet. Steve, Roseann, and Henne and Fargo, came to be a part of the dinner where I would be recognized as the top fundraiser for the 2nd year in a row for this event. I liked that! I was proud, and I did it again. I want to do it once more…But, I really don’t want to do it anymore. Man, it seems like so much work to fundraise.

Besides thinking I am a drag every year on all of you for this fundraising effort. You are over me. Tired of this... Perhaps finding it obligatory... The mailing, the stamps, the writing the letters, the emailing, the reminders... The pressure! Actually, I feel like I need to stop fundraising (I think) so you don’t use up your supporters. Or is it you just don’t want to put out the effort any more?

The 2nd place fundraiser this year was only $995 below me. I beat her the year before too. I raised $7,500. Last year, $12,000. She kicked it up a notch. That was amazing. That had to take an effort I couldn’t imagine.

So, up to now, I have worked hard to do something, and it was looking back, not too hard. This year it was hard. For the moment I enjoyed my recognition and felt a twinge of guilt for not riding a motorcycle. Have I deceived my supporting contributors?

With this feeling I realized that, you know however, they support you, not because you ride a motorcycle, but they support you. Much of the program at our banquet was about the effort all of us have made to support MS. Not the 2 top fundraisers, or only the people over $2K, but all of us. All of us are helping people with MS.

Crossing the finish line, or Ghost of Christmas Future.
This year the end of the ride was quite a ways away from Minneapolis at Camp Courage, West of Buffalo, MN. (60+ miles from home) This week was the week the camp would host those campers with MS. Everyone of us riders were encouraged to go to the finish, as they had a grand finish, BBQ, and tours of the camp for all of us on the ride. It was new, and it was important.

I took my family, and drove home that night. Sleeping in my own bed seemed to be one of the best parts of the weekend, and well worth the sacrifice of driving late to get home that night. Right. Not quite. I slept lightly. I decided I wanted to finish the ride. Even if I drive my car, I want to go and cross the finish line. After all, it was pretty important for those riding. My original thoughts were simple. Go that night; get my award, and not planning to ride again next year. Easy, and all done.

On the dog walk that morning, I called Jayne and asked what she was doing. In one fell swoop, I was able to fix us, and get out with her to Camp Courage. We rode together, and crossed the finish line together on her new motorcycle. The big finish was about to come. It was an amazing to cross. We were in the first group of bikers. About 50 campers were cheering us across. Everyone was grateful and supportive.

We made our way to the barbeque. I helped a woman from Inver Grove, Doris, who was in a wheel chair, fix her plate. When I was seated to eat, a woman from the camp wanted to thank us and rolled up in her wheel chair and read her prepared script about how MS had affected her life first from diagnosis, to it affecting her enough to stop working, and now she was wheel chair bound and needed daily assistance. She thanked all of us for our efforts and let each of us know how important what we did was to her and to people with MS. I was touched and felt better that I thought to get up and finish. I thanked her and let her know that I too had MS.

Right after that moment, I was swelling up. I was so touched. Then I tried to continue to eat, and I saw Doris. She was trying to eat her sandwich. She couldn’t get her arms to go high enough to get it in her mouth. I was hit hard. I lost it. You know how difficult it is for so much emotion to hit you with pulled pork in your mouth. To cry so hard when you are eating is very difficult.

Jayne, hit in the same way, got up and went out to look to look out the window. Seeing how emotional she was, did not help me. The woman couldn’t even eat. She couldn’t even feed herself. I was not so taken because I thought someday that could be me. NO. It was just that she couldn’t even feed herself.

I take so much for granted. What freedom I have. I can do anything, by myself, every day. Each and every day, I do what I want to effortlessly. And then thinking about the things that really bug me and what I get angry about. And then to see someone who cannot even eat by themselves. It makes you think, and can hit you hard. It did hit me very hard!

Jayne saw what a downer I had to be. I was probably affecting the rest of the camp. She came to the rescue. “Doug! come over here and look out this window.” It was only a few feet away. We talked about it a bit, and knew how lucky we were. And realized how important it was to do the ride again.

We really do help people. And they really do need the help we do give them. We make things possible. The view out the window was nice. The swimming dock and lake the campers would be using. I realized at that moment I wanted to do more, and I wanted to take my picture with Doris at the finish line. She keeps going. She has no choice. Every day for her is a finish line. And there are many people willing to help her cross it every day.

A moment later, Doris was with some others and eating now. Somehow the lever control of her wheelchair was caught under the table; pushing her forward into the table. First quietly she said, “Someone help me”. No one heard the first time. “I need some help over here! She loudly called out. They heard and helped her out. A little while later, Doris and I went up and crossed the finish line. When asked what she was going to do all week, she said enthusiastically,
“I am going to have some fun!”

Jayne and I had a solemn ride home. Part of the ride was spent thinking about how we are going to do it next year, and who we are going to have ride with us. Not worrying about how many of my friends we may be bugging for fundraising or how much work it will be. So inspired by thoughts of Michelle, I thank you so much for helping me cross the finish line and supporting my efforts for those living with MS to do the same.

I leave you with two quotes which began to impact my life. One from Doris. “I need some help over here!” My motto for continued fundraising efforts, and my motto for living my life next year, “I am going to have some fun!”

And two quotes from Scrooge aka: A Christmas Carol.

Portly Gentleman: At this festive time of year, Mr. Scrooge, it is more than usually desirable that we should make some slight provision for the poor and destitute, who suffer greatly at the present time.

Ebenezer: Why?

Tiny Tim: God bless us, every one!


This is My MS.

Welcome To My MS

Welcome to my MS.

For the past three years, I've been one of the top fundraisers for this MS event. I hope I can be one of the top fundraisers again this year.

The MS Society has asked me to be the Ambassador of this event. That is pretty exciting.

This year I will be heading to MS Camp at Camp Courage May 5th. I predict it will be hard, but that I will find that for people living with MS, life is harder than being a volunteer at MS Camp.

I have MS, but it doesn't seem like it. So, I am looking forward to the challenge of helping those with MS enjoy a great week.

This is My MS.