A Touching Music Video

Click here to see this cool video I found at Stu's Views & M.S. News.

It makes you think.

Memories: Golf’s Cruelest Trick

(Photo credit: jurvetson)

My wife and I both agree that there were only three things in my life that ever really made me angry. Other than these tormentors, I have always been a pretty calm character.

First, there was my 20-year-old daughter. Well, she's 20 years old now, but she's not the one that drove me crazy. It was the teenage version of her that drove me crazy. She's grown into a fine young woman and we get along quite well now.

The second thing that drove me crazy was the play of my sports teams. Sometimes they did the stupidest things even though I'd instructed them, via yelling at them on the TV, to do otherwise. Why wouldn't they listen?

The third thing that drove me crazy was golf. Before I became disabled I was a decent athlete. I could run fast and jump high. I could hit and catch a ball, and make a basket. In high school I was a three sport athlete (football, basketball or indoor track, outdoor track). I also played a passable game of tennis and ping pong. After having a billiard table in my basement for a few years I could hold my own at pool. But golf? I could never understand that game, except one day a long time ago…

Our daughter Amy was born in May of 1989, well before my MS diagnosis. One Sunday morning that summer I took my turn with the 4:30 a.m. bottle feeding. I put Amy back in her crib at around 5:00 and prepared to return to bed myself. But I had just purchased a golf membership at the local 9-hole course, and it was a beautiful morning, so instead I quietly snuck out of the house and headed for the golf course.

When I got to the course nobody was there. The clubhouse was dark and quiet, but that was not a problem. The flags were in the holes and I had a membership, so I set out to play.

The first hole was a par four. I have no idea what I scored on it, but likely something well over par. The second hole was a 172 yard par three. I pulled out my 3 iron (this is evidence to any experienced golfer that I was a neophyte since the standard club for this length shot is more like a 5 iron, and Tiger would use an 8 iron if his wife is not chasing him with it). My tee shot went straight and rather low, as is standard for a well struck 3 iron.

The hole was cut just over a ridge in the green, so that I could not actually see the cup from the tee box. Most of the flag stick was visible, just not the last couple of inches and the cup itself. I was pleased with my shot because it appeared to have landed either close to the front of the green or on the green itself. I put my three iron back in my bag and trudged down the fairway.

As I approached the green I was a little disappointed. The ball was neither in front of the green nor on the green, so it must have run past the putting surface. There were some shrubs behind the green, and I started looking under those shrubs for my missing ball.

Then it happened. Remember, it was very early in the morning, just after sunrise, so there was still a heavy dew on the green. I stood there in disbelief as I noticed a curved track in the dew, running from the front of the green into the center of the cup, as clear as if it had been drawn by the finger of God himself. I shook my head in disbelief.

I approached the cup and dared to peer down into it. There was my ball. I had made a hole-in-one. Instinctively, I looked up and surveyed my surroundings in preparation for sharing this glorious moment with my fellow golfers. Let the congratulatory hand shaking and back slapping begin! But there was not another human being in sight. Well, that was not exactly correct. I could see the owner stirring up near the clubhouse. I left my golf bag beside the green and jogged up to where he was cleaning off the golf carts.

“Good morning, Jim.”

“Good morning, Mitch.”

“Jim, I have a problem.”

“What? Is it the mosquitoes?”

“No," I chuckled, “I just shot a hole-in-one and I have no witnesses. But I can prove it to you if you'll just come with me for a minute.”

We got in a golf cart and headed off for the second green.

For those of you who are not familiar with golf etiquette, holes-in-one really only count if they are witnessed. Otherwise any unscrupulous, attention-seeking hack could claim he hit one when nobody was watching. I was a hack, but I was of the scrupulous variety.

When we arrived at the second green I was pleased to see that the dew, and the evidence it possessed, was still intact. I told Jim my story and asked him if he believed me.

“I believe you Mitch.”

That didn't make my hole-in-one completely legitimate, but it was better than nothing. I never got another ace, witnessed or not, even though I golfed for about 15 more frustrating years.

In a sense this was the cruelest trick golf ever played on me, and it played some really cruel ones. To allow me a hole-in-one, but without a witnesses…ah, touché golf. Well played.

MS really sucks. But there are one or two silver linings. MS gets the credit for finally making me a quit a game that cost me too much money, caused me to spend too much time away from my family, and left me miserable more often than not. Unfortunately, MS took all those other sports away from me as well.

So as I mentioned above, my daughter no longer drives me crazy. Scratch that one off the list. My MS had made it impossible for me to continue golfing. Scratch that one too. What’s left?

If the Patriots and Red Sox can just win every game they play for the rest of my life…no, wait, that’s not enough…if the Patriots and Red Sox will never make even a minor mistake in any game they ever play for the rest of my life, then I’ll have nothing in this world that makes me angry.

(I’m aware of how well I just set up the Boston sports haters…have at it in the comments section, Louie).

A New Theory about the Root Cause of MS- Chronic Cerebrospinal Venous Insufficiency (CCSVI)

One of the frustrating realities of living with MS is that nobody has a clue as to its root cause. It’s hard to imagine that a cure is on the horizon when we don’t even understand why the disease exists. It seems that for the past 50 years neurologists have been telling newly diagnosed MS patients that the cure is “about 10 years away.” Sure it is.

There have been a lot of root cause theories presented over the years. None have survived the scrutiny of time and truth. This one probably won’t either, but who knows?

An Italian doctor by the name of Paolo Zamboni has discovered a correlation between MS and restricted flow in the veins that drain the central nervous system. Furthermore, he has used angioplasty to open up these restrictions in the veins of some MS patients, with apparent success. Dr. Michael Dake, of the Stanford School of Medicine, has been placing stents in the veins of MS patients, with similar success but also with more complications, a couple of them serious. Many patients of both doctors have stopped getting worse and started getting better.

Click here to watch an inspirational piece produced by CTV that does an excellent job of describing Dr. Zamboni’s CCSVI work. I find the tone of the piece a bit too optimistic, but again, who knows?

What is my take on CCSVI? I think the final answer will lie somewhere on a continuum between total fraud and a miracle cure. Here are three of the possible outcomes:

1.  Further independent studies by other researchers fail to replicate Dr. Zamboni's results. CCSVI is thrown on the trash heap of failed MS breakthroughs, which is becoming a very tall heap indeed.

For me, unfortunately, this is the least desirable but most likely scenario. I don't base this opinion on the facts of the case as much as I do on my experience as a long-suffering MS patient. Most great ideas simply do not pan out.

2. Some researchers are able to correlate some CCSVI cases with some MS cases. CCSVI continues to be studied, and a subset of the MS population benefits from new procedures developed to open up the stenosis (flow restrictions) in these veins.  More specifically, if only some MS patients benefit, it seems likely that it will be the more common relapsing remitting group, rather than the primary progressive group. This is a trend in MS treatment.

In my humble opinion, this is the second most likely outcome, and the second-most desirable one. Again, this is based on a gut feel from me, not a scientific argument for or against CCSVI.

3. Dr. Zamboni's findings are confirmed by independent researchers. CCSVI is identified as the primary cause of multiple sclerosis. The world of MS research and treatment is turned upside down. We stop concentrating on developing new and expensive drugs that only treat the symptoms or secondary causes of MS. Doctors develop safe and effective ways to repair CCSVI in patients. Eventually, when a young person who would otherwise have been diagnosed with MS speaks with his or her doctor, the doctor will say something like, “We found the cause of your problems. It is a condition called CCSVI. In the past it was referred to as multiple sclerosis. I scheduled a procedure for you next week. Since we found this early we should be able to easily repair it, and you should have no lasting effects. Have a nice day, and a nice life.”

Naturally, I consider this the most desirable and least likely outcome of the CCSVI saga. Wouldn’t that be a wonderful thing though?

Just to clarify, even if scenario 3 comes to be, people like me who have already suffered significant damage to our central nervous systems will not see much, if any, improvement in our current conditions. We would simply stop getting worse. I need to stop getting worse, like, yesterday. Getting better can wait.

So, given all this information, what actions am I taking personally? I may very well subject myself to an experimental repair of a theoretical condition well before others might find it prudent to do so, simply because I'm on the doorstep of becoming a complete invalid. My risk/reward appetite is skewed away from the conservative and toward the aggressive, and I believe that to be appropriate given my circumstances.  I'll try not to do something obviously stupid, but too much patience or indecision in this situation will yield a very predictable result.

Right now, as unlikely as I find CCSVI theory to be, it’s the best option I see out there, today.
 


Here are some more resources on CCSVI:

See my subsequent post  CCSVI- Is this the calm before the storm?

For a more detailed and very balanced discussion about CCSVI, see this overview by a fellow blogger:

http://www.wheelchairkamikaze.com/2009/11/ccsvi-vascular-theory-of-ms-separating.html


A comprehensive website put together by an MS patient, tying to gather together many of the online resources dealing with CCSVI:

http://healingpowernow.com/


A link to a study being done at the Buffalo Neuroimaging Analysis Center, attempting to confirm the findings of Dr. Zamboni:

http://www.bnac.net/?page_id=517


A link to the original publication of Dr. Zamboni’s findings:

http://jnnp.bmj.com/content/80/4/392.full


A patient message board, called This Is MS, where the subject is discussed in great detail:
http://www.thisisms.com/forum-40.html


Dr. Zamboni will publish a second paper any day now. I’ll put that link here when it is available:  Here it is:

http://www.ctv.ca/generic/WebSpecials/pdf/YMVA_4198_Zamboni_final.pdf

A Canadian Broadcasting Company piece on the University of Buffalo study (added 12/16/09)

http://www.cbc.ca/video/news/player.html?clipid=1359955050

My MS Top 10 Lists

The Top 10 Reasons Why I Hate MS (at least my version of MS)


10. Accessibility problems in general, bathrooms in particular. 


9. MS costs too damn much money. Most years I spend enough out of pocket money on medical expenses to exceed the 7.5% of AGI required to claim medical expenses as a tax deduction, even after insurance payments are taken into account.

8. Because this is a progressive disease, sometimes I don’t know what it is I can’t do until all of a sudden I can’t do it anymore.  I spend a lot of times on the sidelines watching people take part in fun activities.

7.  I miss all the good things that come with working, including income; sense of accomplishment; sense of being engaged in worthy endeavors; spending time with customers, vendors, and coworkers who are some of the nicest people I know.

6. It’s hard to stay healthy and maintain good body weight when I’m so inactive.

5. I miss outdoor activities like snowmobiling, ATV riding, camping, and actually walking in the woods when I hunt (I still hunt from my wheelchair). No thanks, not interested in handicapped skiing.

4.  I am completely reliant on technology. If a disaster struck (nuclear war, asteroid smashes into the Earth, Yankees win another World Series) how would I survive?

3. I hesitate to talk about things in the distant future, because the future is so fuzzy for me.  When others talk about their long term hopes and dreams, I don’t participate in the discussion.

2. So many people- my wife, my kids, many others- need to go out of their way to help me. I know they don’t mind, but I’m bothered that I must ask them to.

And the number 1 reason I hate my brand of MS is…

1.  No known cause, no disease modifying treatment, no cure.

The Top 10 Silver Linings of Having MS


Let me be perfectly clear about this- MS sucks! But my life has changed so much due to MS, and some of that change has been for the better.  It's been a one step forward, ten steps back process.  Here are some of the steps forward:

10. I have time to keep up this blog.

9.  I’ve met so many wonderful people I would have never otherwise met: people with MS, medical professionals, people who just care.

8.  Lifetime, complementary hunting license and state-wide doe permit.

7.  I can now justify the “3 movies at a time” option at Netflix.

6.  Wheelchair accessible tickets for Red Sox, Patriots, and Celtics are so much easier to get than normal tickets.

5.  I physically cannot clean a bathroom, rake leaves, or vacuum the house- three things I hated to do anyway.  Please, do not forward amazing new discoveries that will allow me to do any of these things again.

4.  I’ve become a better person in several ways. I’ve had to adopt Zen perspectives like “living for the moment” and “mindfulness” that I should have adopted anyway, but probably wouldn’t have if not for MS. I keep things in perspective better now. I don’t sweat the small stuff as much.

3.  I get preferential treatment wherever there are long lines: amusement parks, museums, boarding airplanes, etc.

2.  I’m out of the corporate rat race.  I run a lot of “if I had it to do over again” career scenarios in my head.  If I had a do-over, I doubt I would choose the corporate life again.  I missed out on my calling, whatever that was.

And the number 1 silver lining of having MS is…

1.  Handicapped parking.  Enough said?

For those of you with MS, what are your top reasons to hate MS, and what are your silver linings? 

On Telling My Story Through the Internet

What am I doing here anyway?

This was not the plan. When I started my blog after leaving the workforce earlier this year, I did not intend to write what is essentially a piecemeal memoir. What I had envisioned was a much less eloquent version of my friend Marc’s blog- Wheelchair Kamikaze. Marc writes amazing essays mostly dealing with MS but sometimes completely off-topic. He’s a deep thinker, but writes in a reader friendly manner- a rare combination. My initial posts were written along these lines, and then I published my first memoir piece. I was immediately struck with the idea of writing a series of memoir posts about my MS journey.

I suppose my stories would be more riveting if I had some additional calamity in my life. If I had been an alcoholic, or drug addict, or an abused child; if I had been born with a disability, or if I was an emotional wreck, or if my wife left me; if I had become severely depressed and suicidal after my MS diagnosis; if any of this had happened then I’d have more material to work with. But other than my mother's accident when I was 5 years old and being diagnosed with MS when I was 38 years old my life has been pretty damn good, and “good” doesn’t make for interesting reading. I’m not complaining though. I’ll take a fortunate life over a lack of writing material every time.

I've posted 14 installments of my MS memoirs now, while sprinkling in some other essays, photos, and videos. The 14 “My MS Story” pieces cover the first four years of my journey with MS. Just last week I celebrated (celebrated?) the eight year anniversary of my diagnosis. It'll probably take me 10 or 15 more installments to finish up the memoir portion of my blog. I’m not sure what I’ll do when I’ve exhausted that material.
  
I find memoir relatively straightforward to write because I’m only required to do half the work. I don't have to conjure up innovative views about a particular subject, as I would if I was writing essays. I don’t have to dream up intricate plot lines and fascinating characters, as I would if I was writing fiction. I already have the material at my disposal. It’s in my memory. All I have to do is extract it and put it in writing. Nothing comes as easy to me as writing memoir. I wish more people would give it a try.

I sometimes ask myself what purpose I am serving with this blog. I don't have a clear answer, but here are some thoughts. For healthy readers my writing may answer questions about what life is like with a chronic, disabling disease, or provide some perspective that is otherwise difficult to obtain. For people with MS my writing may be helpful by reminding folks that they are not alone in this journey, and that it is possible to live a contented life as a disabled person. For other folks with MS, who are not in need of a psychological boost, it might simply be entertaining to read about someone else’s experiences with this damn disease. I’m sure there is also a group of readers who know me personally, have watched me deteriorate over the years, and simply appreciate some detail on how this all came to be.

My internal system of values and morals keeps whispering to me that writing about myself is immodest, and therefore inappropriate. Like so many of our basic instincts though, like fear of public speaking and claustrophobia, this one needs to be considered in the light of day. Is this the kind of instinct that saves me from making a grave error, or is this the kind of instinct that unnecessarily hinders my efforts to do the right thing? Now I wonder, if writing about myself is immodest, then how vain is writing about writing about myself? These inner voices- are they voices of reason or irrational fears?

Sometimes when I publish a new post I worry about my family and close friends. I spent a lot of time in the last eight years downplaying the effects of this disease. It's so much easier to tell your loved ones that things are going well than it is to delve into the gory details. So at times this blog has been a dose of reality for those closest to me. I’m revealing many issues here that I’ve never mentioned to anyone before, even to Kim. For these impersonal disclosures, I apologize.

I’m pausing, after 3 months and 23 posts, to ask myself if I’m on the right track. I'm a pretty logical guy. Typically when I have to decide if something has more of an upside than a downside I'll make a spreadsheet, list advantages and disadvantages, and sometimes even use quantitative analysis to reveal the answer. I just can't do that with this question though. For once in my life I’m going to decide something using my gut, not my brain. I'm going to keep writing just because it feels right.

I hope you'll keep reading.

You Can Do Anything You Want, or You Can Be Anything You Want, If You Just Set Your Mind to It

A greater line of bullshit has never been uttered. Who are the people saying this?

1. Successful athletes while hoisting their championship trophy.
2. Successful businesspeople giving a speech to all of their admirers.
3. Successful entertainers accepting an Academy/Emmy/Grammy Award.
4. Parents who are trying to provide inspiration to their small children (I suppose this is no worse than telling them there is a Santa, so I’ll cut the parents of the world some slack).

Just because the following statement often true:

     In order to be successful you must work hard, and you must want it bad.

doesn't mean that this statement must also be true:

     If you work hard, and want something bad enough, you will be successful.

Why? Because we are only in control of a small fraction of what goes on around us. There's an element of randomness and luck to the universe. We really have no better option than to set goals and work hard to achieve them, so I’m not advocating hopelessness or pessimism. But let's not delude ourselves into thinking that if you do everything right then the only possible outcome is success, or even that the most likely outcome is success.

My dream is that one day a wise and successful athlete, businessperson, or entertainer will deliver the following acceptance speech:

     "I was capable of doing what I needed to do in order to succeed… (pause for effect and survey the audience from left to right)

     I was committed to doing what I needed to do in order to succeed…(another pause)

     I persevered through adversity…(point right index finger to the heavens)

     and it turned out well for me, didn’t it?...(big smile).

     If you have a certain skill set, the internal drive to achieve, and whole lot of good fortune then you may also become as successful as I am, but you probably won’t. Thank you …" (exit quickly stage right)

This speech may not strike you as inspirational, but it is truthful. I am more inspired these days by truth than I am by bullshit, and the older I get the better I become at recognizing the difference between the two.

How to Select the Ideal Life Partner

My wife stood out among the rest of the high school freshman because of her nice ass and playful personality. Those were the criteria I had for selecting the person who would eventually become my life partner. Brilliant.

She was 15 and I was 16. I know what you are thinking, but no, the Frankie Valli song goes, “she was fifth grade, I was sixth”. Our story is cute…but not that cute. Anyway, Kim almost immediately decided we would be married. It was years before I realized that this decision had already been made for me, that it was the right decision, and that I really had no say in the matter (although she may have created that illusion in order to humor me).  This was to become a lifelong theme in our marriage. She almost immediately knows what should happen next, and she waits patiently or gently nudges me, until I finally come to see the light. When she’s in a particularly generous mood, she allows me to think that it was actually my idea in the first place.  There was that snowmobile I bought her (me) for Valentine’s Day one year.  That was all me. 

So if you read my initial post in this blog you know that I listed Kim’s caregiving as one of the factors I have working in my favor- one of the reasons I lead such a contented life as a disabled person. Actually, I think that it's a little misleading to list Kim as just another tool in my disability toolbox. There is no person, organization, or medical device in this world that is more responsible for my happiness and well-being than my wife- not by a long shot. 

We married after I graduated from college, even though Kim had one more year of school to go. We lived in Ohio and Vermont but returned to Maine to start our family. We worked hard and did our best to raise our children well, but I won’t deny that we took some time to have fun along the way. As our children became more independent and our careers successful we were setting the  table for a wonderful empty nest stage. Our relationship was strong. We had played by the rules (for the most part) and we were poised to reap our reward. It was likely we’d travel. Maybe we would buy a second home on a lake or near the ocean, or maybe we'd buy that big fancy camper that requires an oversized pickup truck to haul. We're still suckers for sitting by a campfire in the evening.

These are the things I wanted for my wife. She deserves it. But life is not like a bank account. Just because you make deposits doesn’t guarantee that you will enjoy withdrawals later. There is no FDIC insurance working here.  Life doesn't owe us anything. Life simply happens, and you make adjustments to the best of your ability. I just felt a momentary urge to mention something about lemons and lemonade, but I supressed it because I‘m afraid I’d lose half the readers, and justifiably so.  Close call.   

I find it difficult to believe, but the divorce rate is remarkably high among couples where one partner becomes disabled. For us, I think just the opposite has happened. We've grown closer by facing our challenges together. Although our lifestyle is not (and will never be) what we once imagined, we are making the best of it. And I'm not convinced that we're any less happy than we would have been with the travel, or the second home, or the big camper. Who knows, maybe we will travel a bit.

There must be books written on the challenges faced when a spouse takes on the added role of caregiver. Without having read any of them, I am certain that there is a consistent theme in each book about how the disease can be as trying for the healthy spouse as for the sick spouse.  I believe this. I’m not just playing the martyr when I say that I'm glad it happened to me instead of to Kim. I’m actually being a bit selfish about the whole thing.  When you're standing on the outside and watching your sick spouse it must be difficult to know the right thing to do or the right thing to say. You can't tell if your spouse is about to fall and needs you to provide a cushion or if he/she will be annoyed because you interrupted what was going to be a successful maneuver. When you're on the outside you can't tell if your spouse is in serious discomfort or is just grimacing because he's got, well, killer gas. I suppose Kim can’t know for sure if the disease is actually making me despondent and I’m only faking contentment, or if I’m really doing OK on the inside. Kim, I’m really doing OK.

I feel very fortunate that I have a life partner, best friend, and now primary caregiver as wonderful as Kim. However, I deserve no credit for this decision made so many years ago. I didn't choose her because I thought she would make a great life partner. I already told you why I chose her. I just got lucky, very lucky. Kim has a contagious passion for living, and is a wonderful mom. She is thoughtful and caring, sexy and fun-loving, intelligent and dedicated, optimistic and industrious, loving and patient. She could've done so much better than me, but I'm glad she didn't.

It’s just another example of the charmed life I lead that to this day, in addition to everything else, she still has a nice ass and a playful personality.

I love you Kim.  I sleep well knowing that no matter what challenges await us, the ones that are on our radar as well as the ones we don’t even know about yet, we’ll be facing them together.  And even more importantly, the joys that we’ll experience in the coming years…we’ll be celebrating them together.   

Maybe we’ll celebrate another World Series win this year? Uh, well, ya, maybe.

Check Out My New Video of Two Lights State Park

In the top right hand corner of the page...enjoy.

Or watch it here. 

An Easy Way for People with MS to Get Involved (healthy readers may just want to skip over this one)

If you have MS there are lots of ways to help out. You can participate in a clinical trial. You can join a support group. You can start an MS Blog :-) . But perhaps the easiest way for you to engage in the effort to find a cure is to join the registry for the North American Research Committee on Multiple Sclerosis (NARCOMS). If you are not yet a member of the registry I hope you’ll give it a good look. I’ve been a participant for, heck, I can’t remember how many years. Your only obligation is to fill out an online survey about your experiences with MS once per quarter. I’m convinced that the information is kept completely confidential. It takes about 10 minutes to fill out.
From the NARCOMS website:

“The purpose of the Registry is to speed the development of new therapies and healthcare services by facilitating research in these areas and reducing the time and cost of research studies. Individuals with Multiple Sclerosis are invited to enroll in the Registry through direct mailings, MS centers, support groups, and the NARCOMS Registry webpage. Enrollment involves filling out a questionnaire and mailing it or submitting it online to the Registry Administration Office. Participants are assured that strict confidentiality will be maintained and that their names will not be given to anyone without their permission. The questions asked are regarding demographic information, MS-related medical history, immunologic and symptomatic therapies, health care services used, and a series of patient-assessed performance scales that reflect disability in eight domains of function.

Benefits of Participation

· You are helping to provide the information needed to learn about the variations of MS in a very large group of patients and to monitor the progression of the disease

· You help us monitor the effects of various treatments. Your information may be providing ideas for future research

· You will be receiving the printed version of the MSQR free of charge (note from Mitch: this is an outstanding publication)

· You will be informed of recent studies and their results

· You will be notified of clinical trials in which you may be eligible to participate”

Click here to sign up.

How to Interact with a Disabled Person: 101

Image by Esthr via Flickr

I am overwhelmed by how helpful and pleasant most people are when they encounter me in public. Just last week I was zipping through a crowd of people rather quickly in my power wheelchair . My friend remarked, “you could hurt somebody the way you drive.” She was right. “But,” I rationalized, “even if I run over an innocent bystander and knock him to the floor, once he realizes it was a wheelchair guy that did it, he’d probably just dust himself off and apologize to me.”

Even though people are generally very considerate, I thought it might be helpful for me to provide some pointers about interacting with disabled people when you meet them in public (or at least if the disabled person you meet is me):

1. If you've read my earlier posts you know that I have a high-tech wheelchair. If you'd like to know how it works, and I'm not in a big hurry for some reason, I'll probably tell you everything I know about it. However, I would appreciate it if you don't cause a scene. Please don't yell out in the middle of a busy shopping mall, "Earl! Earl! Get over here! You've got to see this! This chair is the freakiest thing I’ve ever seen!" This really happened to me last week.
2. If you are so inclined, feel free to offer me assistance with tasks. However, if I say "that's okay, I have the door" then please don't open the door for me anyway and just get in my way and turn what was going to be a slick maneuver into a pileup in the doorway. In many situations I wholeheartedly welcome offers of assistance like this. So please don't take the other extreme and assume that any offer of assistance will be considered some sort of insult. My advice is to offer assistance if it feels right, but be prepared to step away if your offer is kindly refused.
3. Personally, I find it okay if you ask me "why are you in a wheelchair?" It gives me a chance to advocate for my favorite disease. I want everyone to know what MS is, what it can do to an otherwise healthy person, and that folks with MS are normal people trapped inside a failing body. MS is a disease, but it is also a cause, and I am always looking for opportunities to talk about my cause. I doubt that all disabled folks welcome this question as freely as I do though, so proceed with caution.
4. On a related note, unless we are close friends please resist the urge to give me advice on how I can be fixed. Most of the time a person is in a wheelchair because of serious injury or illness. However, I don't know how many people have, upon learning that I have MS, blurted out the fact that they know the cure for MS because of a friend or relative’s experience, and here it is! In contrast, an acceptable conversation starter would be, “did you see the news story about Treatment X, which is supposed to help MS?” Maybe I didn’t see it, and thank you for bringing it up. I have no doubt that your heart is in the right place, but remember that there is a 99% chance that I know way more than you do about why I am broken, and what I can and cannot do about it. I’ve spent hundreds of hours studying this.
5. Do kindly step out of my way if I am attempting to navigate through a crowded room. Again, do not go overboard and draw unnecessary attention to me by shouting at the top of your lungs, “Make way! Wheelchair coming through!” or similar. I am hereby publicly apologizing for all the toes I already have, or may in the future, run over.
6. Most disabled folks welcome the sentiments of concern, respect, and appreciation for what we are going through, but deplore the sentiment of pity. “I don’t know if I would be handling this situation as well as you are,” is OK. “Keep fighting the good fight,” is acceptable. "You poor thing. I feel so bad for you," is not good.
7. Please don’t talk over my head to the person that is with me, as if I am a child who cannot understand you. I know you don’t do this on purpose, but it is really annoying.
8. When you are in a conversation with a group of people, please try not to stand in front of me, blocking my line of sight to the rest of the group. Try to open up the group into a circle so I can see everyone, and they can see me.
9. A couple of months ago I was preparing to leave a restaurant, and sat before the exit trying to determine the best strategy for getting through those big heavy doors. Sure enough two young men zigzagged around me and barreled out of the restaurant without even asking if I could use some help with the doors. If you see a disabled person pausing in front of a door, then there's a good chance that they would appreciate somebody holding the door open for them. After the doors slammed behind the two young men I threw my arms out in disgust, a pure reaction, and a waitress saw me and opened the doors for me. I was a little embarrassed that I had reacted in that demonstrative way. I don't feel "entitled" to help from everyone who comes along, but the situation just struck a chord with me.
10. Finally, if your small child points at me and says things that would be inappropriate for an adult to say, please don’t be embarrassed. They can’t help themselves. I generally find that if I give them a big ol’ smile I’ll get one right back.

I hope I haven’t made it too complicated for everyone. I will reiterate that the vast majority of my dealings with people in the community are very pleasant and respectful, and are not like those described above. Now get out there and interact with your favorite cripple disabled person!

I invite readers to leave their horror stories, pet peeves, and general feedback in the comments section.

This is Not My Mother's Wheelchair (Part 2)

So the iBOT story does not have a happy ending...for now.

In December of 2008 I received, along with all the other iBOT owners, a most unwelcome letter. Due to the fact that the iBOT was not selling at an acceptable rate to support the business model, Independence Technology ceased production and sales of the device. Thankfully, they will support the iBOT with service and parts for a period of five years.

The letter indicated that a key reason for the failure of this business was that insurance companies, including the government owned entities like Medicare and Medicaid, were not reimbursing patients for these chairs. Independence Technology has not provided a firm number, but estimates are that they sold only a few hundred iBOTs. I've been all over the country in my iBOT for a year now, and have not yet happened upon another iBOT.

There are a few people, including Dean Kamen the inventor, who are lobbying Congress to rescue the iBOT by having Medicare and Medicaid reimburse qualified patients for the purchase of iBOTs. If Medicare and Medicaid comply then the private insurance companies may follow suit. Even then, there's no guarantee that the parent company of Independence Technology, Johnson & Johnson Inc., will restart the iBOT business. But it seems likely that either Johnson & Johnson or somebody else would jump at the chance to produce this life changing product if sales can be at least partially subsidized by the insurance companies. It's a difficult time to be lobbying the government to spend more money though (or is it, given all the stimulus spending).

In fairness, I should mention that the iBOT is not for everyone. Only a trained clinician can determine if the iBOT is a suitable fit for a particular patient. However, a large portion of the disabled community would be able to take advantage of this wheelchair if it was again available.

The iBOT represents a huge leap in technology. This is not tweaking. This is not optimizing. This is revolutionizing. It puts disabled individuals in a position to function in a world that is still, and will always be, largely inaccessible. The insurance companies have formulas to determine the value of a wheelchair. There are no factors in their equations for the benefits that the iBOT provides. The iBOT breaks the mold, but the insurance companies continue to evaluate it with outdated metrics. The iBOT is not the most expensive wheelchair in the marketplace. Medicare and Medicaid will often reimburse patients for much more expensive chairs- chairs that meet their narrow criteria.

This may be my last iBOT, because they may never be manufactured again, and because my continued disease progression may eventually make it impractical for me to operate one. Until I received the fateful letter, whenever someone stopped me and asked about the chair I spoke to them with as much conviction as the inventor of the iBOT or the CEO of Independence Technology would have. I was a huge advocate, and I spoke from my heart. Several folks questioned me about the iBOT on behalf of loved ones who were wheelchair users, and I felt great satisfaction in revealing this wonderful option to these families.

Now it's different. I still explain the chair's functions to folks, and tell them how it has changed my life. However, I don't do it with the enthusiasm that I once did, knowing that at some point in the conversation I'll need to explain to them that this device is no longer available. I don't want this to be the last iBOT for me, and for them. I sometimes imagine a day when I’m no longer stopped in the supermarket and asked how the heck I do that- because it just won't be that uncommon to see a wheelchair user zipping through the aisles on two wheels.

Great technological advances are not supposed to go away because of logistics, or red tape, or politics. It will be a tremendous shame if the iBOT just disappears. Here are a few websites and other links about the iBOT, and about the effort to breathe life back into this amazing invention.

http://www.ibotnow.com/home.html

http://disabilities.suite101.com/article.cfm/the_end_of_the_ibot

http://wheelchairrevolution.blogspot.com/

http://www.goibot.com/

Alan Brown Youtube

This is Not My Mother's Wheelchair (Part 1)

When you can't walk, how the heck are you supposed to get from point A to point B?

In early 2008 I was alternating between an electric scooter and two forearm crutches in order to get around, depending on the distance that needed to be traversed. Over time I found myself using the scooter more and more and the crutches less and less. I realized that I was using a part time device, the scooter, in a full time capacity. A power wheelchair is much better suited for full time occupation. I know this, because my mother spent the last 39 years of her life in a power wheelchair.

So I began researching my options. Eventually I stumbled on the most amazing wheelchair- the iBOT 4000. I contacted Independence Technology, the manufacturer, and they brought a model to my house for a test drive. After the test drive I told my wife, with certainty, that I would somehow own one of these. The list price was about the same as a new car. Independence Technology, my primary care physician, and my neurologist all helped me petition my insurance company. The insurance company agreed to pay for exactly zero percent of the cost of the chair. It was deemed "not medically necessary". Heck, they wouldn’t even cough up the amount that they would have paid toward a traditional power wheelchair. Since there was no stopping me on this one, in July of 2008 my family and I pulled together the money and I bought the thing.

So what’s the big deal about the iBOT 4000? The iBOT is a wheelchair developed by Dean Kamen, the same gentleman who developed the Segway Personal Transporter, the first wearable infusion pump, and a bajillion other items that help improve people's lives. The iBOT has four operating modes. In standard mode the chair looks and acts like any other rear wheel drive wheelchair. This is the mode I use at home.

In 4-wheel drive mode the chair can navigate rough, uneven terrain. I have excellent traction on ice and snow, as well is in the rain. I can hike with my wife on many of the scenic trails along the coast of Maine, and I can go to the beach. In this mode I can actually climb up and down sidewalk curbs if there are no curb cuts where I want them to be.

In balance mode the chair operates on only two wheels, maintaining my balance while simultaneously raising me up to standing height (but still in a sitting posture). This mode is depicted in the image at the top of this posting. I can move about in balance mode, or stand perfectly still. My height is adjustable so that I can see eye to eye with people between 5'4" tall and 6’ tall. When I'm in this mode out in public people can't help but stop me and ask me how the heck I am doing this. I give a variety of answers ranging from “seven on-board gyroscopes” to “magic” depending on my mood and who is asking.

The fourth mode is the stair climbing mode, depicted below. Yes I can climb stairs- up and down. If the stairs have a solid railing I accomplish the climbing by myself. If the stairs do not have a railing then my wife is trained to assist me. How many stairs, you ask? I can climb stairs until the batteries go dead or the cows come home, whichever happens first.


I've taken the iBOT with me on business trips at least a half dozen times in the year that I've owned it. The chair folds up nicely and stows away with the checked luggage on a plane. I've gone to beaches and parks, private homes, my daughter’s upstairs apartment, and old inaccessible restaurants. I use the chair all day, every day. It does everything it's advertised to do and a little more. It's a miraculous device.

This is my first wheelchair. I've never owned a traditional chair. If the iBOT ever becomes unavailable to me, that loss will have a negative impact on my lifestyle. It would represent a significant step backwards in terms of my personal accessibility to the world around me.

Let's Get this Party Started

My legs are pretty much shot. My left hand is rapidly losing its dexterity and strength, and my right hand is starting down that road. My arms are still somewhat strong, but are getting weaker all the time. I can’t participate in many of the recreational or social activities that I used to. I can’t perform many of the basic functions that a person needs to perform to get through the day. I can’t even work for a living. I take a bunch of prescription drugs, sometimes of the experimental variety, because there is no know cure or even effective treatment for Primary Progressive Multiple Sclerosis.

The above litany is not a complete list of my MS symptoms. I've got more, but I'll spare you the complete accounting. My point being- if I don't mention it, don't assume I'm not experiencing it.

Bad luck, huh? Life is unfair, right? It must suck to be confined to a wheelchair. You might think that this would be so, but for me it is largely not the case. I have good days and bad days, but no more so than the average 45 year old man. I’m not happy that I have MS, but I am happy. I spend almost no time lamenting over what could have been, or regretting my misfortune. Because I enjoy my life as much as I ever did, despite its challenges, am I crazy, in denial, or am I on to something? I started this blog in part to explore those types of questions.

I believe that an individual's level of happiness is largely self determined. However, to be practical about it, we are also influenced by our own inherent personality traits and by our interactions with the world around us. Here are a few things that I have working in my favor- traits and experiences that just make it a little easier for me to live a contented life:

• Good internal wiring. I have a favorable genetic makeup for dealing with situations like this. Thanks Mom and Dad.
• I have an incredible support system. It starts with my wife, and includes other family, friends, and medical professionals. My support system also includes my online MS friends, almost none of whom I’ve actually met face to face.
• I watched and learned as my mother endured similar challenges with incredible grace and courage. Her disability was due to a sudden accident when she was 35 years old and I was only 5. Her spinal cord injury was in her cervical spine. My primary lesion load (area of disease activity) is in my cervical spine, in almost the exact same location as my mother’s injury. The longer I battle this disease the more my symptoms resemble hers. I know. It’s freaky.
• I have some level of financial stability. I'm not wealthy, but I might not be so happy if I was cold or wet, or worried about where my next meal would come from.
• Although I'm often fatigued, I am not in much pain, and I rarely feel "sick".
• I have widely varied interests. When I can no longer enjoy one activity, there is another activity on my list that I can take up (i.e., blogging).
• I have the ability to enjoy sedentary pursuits. If this had happened to my hyperactive wife, for example, it would have been a significantly greater challenge.

I readily admit that I have a lot of things going for me that many disabled folks don’t have, evidenced by the list above. So I’m not here to say that I have a formula that every disabled person can follow to achieve true happiness. In fact I can't say with certainty that I'd still have this positive attitude under any circumstances. I'm just here to get the conversation going.

The reason I am blogging now, and never have blogged before now, is that as of May, 2009 I have lots of time on my hands and need something fun, interesting, and useful to help fill my day. After 8 years of getting up and going to work with MS, it finally got to the point where I could no longer do my job. If you have not read the About Me section on the right hand sidebar yet, please take a minute to do so.

Here are some desirable potential outcomes of this blogging adventure, in no particular order:

1. I will connect in a variety of ways with people who I don't currently know.
2. This blog will stimulate some interesting conversations on a variety of disability related topics.
3. This blog will have any sort of positive impact on some of the folks who visit it.
4. I will leave a legacy of writing that will outlive me, so that my descendants will understand what life was like for their disabled ancestor.
5. The process of maintaining the blog will be in some way therapeutic for me.
6. I will come to understand myself better.
7. Those who know and/or love me will come to understand me better.
8. I will advocate for the disabled community: raise awareness, articulate our plight, help facilitate change
9. Some media giant will buy my blog and I will get rich. Ha, that is rich.

Here is one undesirable potential outcome of this blogging adventure:

1. In the process of organizing, acknowledging, and posting my thoughts here, I will come to my senses and realize I’m completely screwed, and change the name of this blog from “Enjoying the Ride” to “Life Sucks- Why Bother?”.

Let’s just get this party started and see where it takes us. Thanks for visiting. My hope is that this blog will be more of a conversation than a presentation, so please feel free to use the "comments" option at the bottom of each posting to give feedback. Also, please feel free to share the http://www.enjoyingtheride.com/ link with anyone who you think might be interested.