Tuesday, June 1, 2010

MS Camp - Welcome to Majestic Shores

Unemployment allows for new opportunities. The best one I was able to pursue was again being a volunteer at MS Camp. This is my 4th year and while always a little fearful, I was happy to be available to go, and welcome back at such a late date to Majestic Shores.

That is right, no longer camp, the Minnesota Chapter of the MS Society has converted Camp Courage to "Someplace you would like to go, right? called Majestic Shores Resort. Offering guests more flexibility in their scheduling, events, and program options, guests of the resort even have choices in the times they are served dinner.

So, back to many famaliar faces, friends and wonder people who volunteer to help people with MS, work for the MS Society, and those of us who have MS. In addition to coming back to a family I was longing to be a part of, I enjoyed the dose of reality my friends and MS family provide me. This is a place where we we see people living. Living their lives in service, support, and fighting the devastating effects of MS, with courage, humor and hope.

Given that one can see daily the glass half full of the mediocrity, hypocrisy, uncaring incompetence that feeds the newsreels, this program made possible by the MS Society for me is like an annual reset button clicking out the negative.

While an ugly and unpleasant comparison, think of Majestic Shores Resort as the opposite of the BP oil devastation. The MS Society gushes with the goodness touching peoples lives in areas and ways we had not thought possible. However, unlike this accident, your support of me and the MS Society makes this possible. Thanks for your continued generous support.

Saturday, August 15, 2009

"Oh What a Feelin" Backstory for this Video

Dear Friend,

Once again this year I am fundraising to support the MS Society, and I am asking you for your help. Next weekend, August 15th, 2009, I will join a very dedicated group of motorcyclists for the MS River Road Run fundraising event – and “what a feeling” it is to know that I have your love and support.

You have been so incredibly generous in the past and have made me the top fundraiser for this event for four of the last five years. What a feeling it’s been to have your encouragement. In these tough economic times, I can appreciate that you may think “I just can’t do it this year.” But I hope you will consider even just a small bit of support for those who are living with the devastating effects of MS – something I’ve seen up close as I’ve volunteered the last three years at Camp Courage where an increasing number of MS patients – many who have lost nearly all sense of feeling – are attending.

So perhaps it’s a little ironic that while I remain healthy and I have not suffered a relapse of my MS symptoms, I have suffered perhaps a relapse in judgment by participating in “MS Camp’s Got Talent” show with a rendition of “Flashdance – What a Feeling.” In an effort to get more support, I would like to share this video I have on my blog. To the right of the video you can click to get to my fundraising page. http://mymsdouglyon.blogspot.com/ . While there, feel free to provide your comments.

I hope you can once again help me accomplish my aggressive $10,000 fundraising goal, which will go further than ever since I am limiting my appeals to electronic messages. There are two ways you can support me. From the link on My MS Blog, you can click directly to my secure fundraising page to contribute. If you prefer to send a check, I kindly ask that you make it payable to the MS Society, and mail it to me at Doug Lyon, 700 Washington Avenue North, #401, Minneapolis, MN 55401.

To directly support me, you can click or follow the following link. http://main.nationalmssociety.org/site/TR/General/MNMGeneralEvents?px=1804780&pg=personal&fr_id=9880

I look forward to your comments on my blog, or on the Participant Center on my fundraising donate/pledge page.

Finally, what a feeling it is to have your continued support. Thank you for any contribution you can make.

Saturday, November 15, 2008

New President - Dinner is served - and other family and Barack Obama connections

Thanks to Roseann and some other great friends who keep me up to date with information regarding my famous parents.

Scroll down in this link and have a look at the last person to be in the running for White House Chef. Yes, that is the butter cow lady, my mother. And by the way, the first person pictured...who is Tom Seitsma's pick for the job... well, Tom, the food critic of the Washington Post is a friend of Steve and me.

Now, I don't know if my mother will be cooking at the white house, but it is true, she and my father were supporters of Barack Obama at the Iowa Caucuses way back when. She also sculpted our future presidents bust out of butter. While I am excited we have elected Barack Obama as our 44th president, it is with concern of being contacted by the secret service, that I say, "my mother has his head (butter sculpture bust) in the freezer." Good to know that it is no longer there and we have safely elected this man without any spilt milk.

Check out the following links: My mom and dad starred in a video in support of his campaign September 27, 2007.


My father was part of Barack Obama's pre-election infomercial. the 4th video segment at click 3.53.

Joe and Duffy Lyon of Tama, IA talk about why Barack Obama inspired "hope" - in the form of a large "O" made out of butter.

Pictures of mom and dad at the farm: http://my.barackobama.com/page/community/post/samgrahamfelsen/CJVX

Be sure to click on the Duffy Lyon an her husband Joe link for more pictures scroll down and you can find the (or click here) "No Bull" radio ad done by my mother as well.

Or Obama Nabs Butter Cow Backing October 24, 2007. again scroll for the "No Bull" commercial which is easier to find on this page.

Citizen Kate report - "On the trail" commission of Barack Obama bust.

Thank you to everyone for your support of my family and their celebrity status.

This is Doug Lyon MyMS.

Thursday, August 28, 2008

2008 River Road Run August 16-17, 2008

Dear Friends,

Once again I will join over 200 motorcyclists August 16th and 17th riding to end the devastating effects of MS. As you know last year I was honored to be the Ambassador for this event. This year, the honor is to let all of my friends and family know that while still on my daily injections of Copaxone, my doctor reports that I am healthier (as far as MS goes) than ever and with this course of treatment - I may even be better than in previous years.

In May, I also survived, very well I might add, volunteering atMS Camp for my second year.

Thank you for supporting me in helping others and to be the change I want to become.

Because of your generous support, I was one of the top fundraisers for this event last year. My goal again this year is to raise at least $10,000 – a goal you graciously helped me meet. Please help me again with your tax-deductible donations. Remember to check with your employer, as many businesses match contributions made by employees.

If you would like to contribute via the Internet, please log on to www.mssociety.org. You will find on the left hand side towards the bottom of the menu’s an icon for ePledge – sponsor a Participant. Search for me and then select me from the short list.

Otherwise, please make your checks payable to the National MS Society. If your place of business matches your contribution, let me know so I can keep track of contribution totals. My deadline to get my donations is Friday, August 15th, 2008. After the event, I will make sure I send you a recap of the event to all my sponsors.

Thank you so much for your support of me and the fight against MS. Please call me if you have any questions or comments about this event. I can be reached at 612-236-9420 or by email at douglyon@tech4learning.com


Camp Survival 2008 Preparing for the River Road Run

In May, I survived very well, MS Camp for my second year.  My first year volunteering, I was apprehensive about MS Camp because I didn’t know what to expect. The second year my apprehension grew because I knew exactly what to expect. However, the 2nd year I quickly was reconnect with my family I realized I had missed all year.  It has become a special experience for me to strengthen the bond with friends and meet new people.  Being a part of providing such a positive experience for so many people has more rewards than I imagined.  I have seen first hand how far your dollars have gone to help these individuals.

Stopping my life for a week and getting to know people I likely would not have meet in my daily life is also very rewarding.  It makes me know more about why I am who I am, who I want to be and most importantly why you and all of my friends are such an important part of my life.

I know it is difficult to understand with words how powerful of an experience MS Camp can be. I see people living with this crazy disease which has devastating effects in how they live. I also see amazing examples of the human spirit in such a different way than I could have imagined. It is amazing to be a part of helping people with MS live their lives. And doing it well.

Thank you for supporting me in helping others and to be the change I want to become.

Monday, May 5, 2008

May May MS Camp Day 2 - may 5, 2008

The schedules change from year to year to try to keep some variety for campers. Sunday all the campers arrived and this year I was part of the welcoming committee greeting campers as they came in for the week. Most of the independent campers (independent meaning they can get around by themselves) drove here by themselves. I was the Valet car guy; parking cars out o f the way in the field.

Since the arrivals were staggered, I had plenty of time to get to know some of my fellow volunteers better. This is a tiny world. I realized so many connections. One to my old next door nieghbor Jane who rode with me in the River Road Run a couple of years ago. Lisa, who is not only a trainer for care giving dogs, "helper dogs" is also vice president of the MN hosta association. So, that is one of the many connections I have made by talking to all the people here.

One of the schedule changes was the first night of camp. Last year, while I don't remember what was on the agenda, this year, we had a cabin sharing session. First with the volunteers. MS Camp is 29 years old. One of the volunteers, Dave has been volunteering for 26 years. In addition to being a kind, helping person, he loves the environment at MS Camp. It is some wonderful people helping other people.

Pat really made me think about what a positive environment the MS Society has created here at camp. Throughout the year, he has so many things to worry about. When he comes to camp, this week at MS Camp he does not have to worry about anything. Besides the number of years people have been coming to camp, and the enjoyment, fellowship, education and sharing about MS, many of these campers spouse's and caregivers are thrilled to have a week off as well. Funny how this effort by the MS Society brings help, relief, and support to so many people struggling with the devastating effects of MS.

Now after hearing about that some what "taglined" sentence. "Fighting to end the devasting effects of MS. Come to camp. While there is hardly any negativity here at camp, believe me, this disease is or can be devastating. From not being able to eat by yourself, to losing your cognitive abilities. It is devastating. It is one thing to see someone in a wheel chair who you can see what the disease has done to them. Rick, however, looks normal, talks normal, walks normal, but MS has taken away his cognitive abilities. None of which are obvious, in fact, I would still debate there are any issues with him. Perhaps you need more than a week to see those devastating effects of MS.

Camp is a powerful thing for many people. I am glad I am here. The only reason it is easier here at year 2, is that I now belong to a new family. Being part of a family brings all sorts of things to consider, but the most important is a common understanding, respect, love, likes, dislikes, and you know, family stuff.

Keep an eye out for my next posts on a healthy balance, and MS and Doug's arm chair politics.

This is MYMS.

Sunday, May 4, 2008

New Camp 2008

I have been telling people that I am not looking forward to camp this year. Last year, I was not looking forward to it because I had no idea what to expect. This year, I knew exactly what to expect, so that is why I was not looking forward to it.

Upon arrival at Camp Courage, I fell right back into it. Seeing all of my past friends I made last year (volunteers) and actually many more. I think we have more volunteers this year. My negative energy quickly turned to eagerness to get the week started. Our training we all get was a welcome review not only for me a 1 year vetran, but the volunteers of 20 years as well.

This year we learned how to take better care of ourselves with transfers of campers and how not to hurt ourselves. I learned that the nursing profession has surpassed injuries and loss time accidents than the construction industry. Health care is actually a dangerous business for caregivers. The training was great for anyone who cares for anyone else.

My greatest challenge so far at camp was snoring. 3:15 am my fellow volunteers are louder than the nearby freight trains near the camp. At 11am campers will begin to arrive. Tonight, I remember, and I am told that the snoring will be even worse.

This is mymsdouglyon Sunday Morning at MS Camp 2008.

Monday, January 7, 2008

Mr. MS Himself, Montel Williams

My lucky life took me to New York City last weekend. On the way home at Laguardia Airport I had the pleasure to briefly meet Montel Williams. After trying to get home on an earlier flight, the neighboring gate was deplaning. Steve, my partner, noticed him and said I should go talk to him. I shy away from approaching stars. They just want to be left alone. After about 120 feet of persuasion from Steve and building my courage, I did approach him after another woman briefly spoke to him.

"Mr. Williams," I said, "I just wanted to thank you for all you are doing for MS. I have it too. " He was quite friendly and conversational. He said to keep up the fight and then also talked about the fact that there are some new treatments just around the corner. He talked about the possibility of a cocktail that would prove effective for people struggling with the disease.

I said that I don't have the disease that badly. I told him that my diagnosis motivated me to do something. Fundraising.

Following Montel, you could tell he was affected by MS. I am a fan of Montel Williams. He is strong and outspoken and in all of his appearances, you would not realize he has MS.

We chit chatted a little bit and he asked about what medication I was on... I said Copaxone.

Montel was nice and positive. At the close of our conversation, he said to check out his
Website to get some more information about how he is supporting the disease. So have a look. http://www.montelms.org/ Montel heavily supports the medical community in finding a cure for this disease and 100% of your contributions go toward the cause.

Not only was this fan glad to meet you, Mr. Williams, as even one other person whom I noticed grabbed your attention after I left you. Everyone is impressed with your struggle, courage, and leadership in what you are doing to find a cure for this disease.

Make sure you have a look at his site. Take notice of the section called Take Action: Montel Williams on Medical Marijauna. With all the experiments drug companies get to do in concocting drugs to sell, and the sometimes harmful and deadly side effects they have to explain in their commercials, I know that for the people who marijauna helps, there is no reason they need to be considered criminals. Like Montel, I don't condone breaking the law, but consider this. After you have a few cocktails to unwind from a hard day, look me or someone suffering the effects of MS in the eye, and tell them they should not be using this effective safe "drug." Then for my arguments sake, be prepared to never drink again!

This is MYMS.

Monday, November 12, 2007

Daily Life (MS doesn't affect rudeness)


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?


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!

Thursday, August 30, 2007

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.

Sunday, August 26, 2007

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.

Saturday, July 21, 2007

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!

Friday, July 20, 2007

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.

Wednesday, July 18, 2007

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.”

Saturday, May 19, 2007

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.

Wednesday, May 16, 2007

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

Sunday, May 13, 2007

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.

Thursday, May 10, 2007

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

Thursday, May 3, 2007

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.

Tuesday, May 1, 2007

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.