CCSVI - Round Two: The Day Before the Procedure

The drive to Albany, where I had my second CCSVI treatment, is so much different than the drive to Brooklyn, where I had my first. This is true until you get about ten blocks from the Albany Medical Center, where the poor, inner-city section of Albany rivals any tough neighborhood in New York City.

But I can't say enough good things about Dr. Siskin, his practice, and the Albany Medical Center staff and facilities.

On Tuesday, March 15, 2011, Kim and I arrived early enough to check into the hotel, which is attached to the hospital, before driving the 15 minutes to Dr. Siskin's office. Anyone who is being treated by Dr. Siskin at the Albany Medical Center should strongly consider staying at the Hilton Garden Inn. It's just so convenient, and is a decent hotel at a reasonable price.

After checking in, we drove to suburban Latham, New York, to the Capital Region Health Park, where Dr. Siskin's office is located. Maine is a rural and somewhat backward state, so I'm easily impressed. I've never seen such a large and shiny Healthcare Mall before.

In the waiting room, we met a nice couple who had driven two days from North Bay, Ontario, for the wife’s CCSVI treatment. We shared their dismay about Canadians’ inability to obtain CCSVI treatment at home. I asked her if she had ever heard of CCSVI Alliance, and I don’t know who was more pleased, her or me, when she indicated that she loved the website and read it frequently, and I revealed that I volunteer for the organization.

But before we could chat very long, Dr. Siskin came out in the waiting room and introduced himself to us. He met with Kim and me in his office to discuss the upcoming procedure, and to give us his thoughts on CCSVI treatment in general. I enjoyed learning some of the details about how the catheter is threaded through the body, how the balloon is inflated, and how blood flow is assessed. As a chemical engineer, I dealt with flows of all sorts of materials through all types of piping and pumping systems. The analogy with blood flowing through veins is obvious. The meeting only ended because I ran out of questions, not because I was hurried out of the office, as is all too common in many such consultations.

As I've mentioned before, I find Dr. Siskin's approach to CCSVI treatment to be refreshing. He acknowledges that we still know very little about CCSVI and its relationship to MS, and we know very little about the expected benefits, or lack thereof, for any particular individual. But nevertheless, he sees enough evidence to oblige the MS community by performing these procedures for us.

Next, a technician performed an ultrasound of my head and neck veins, using the Zamboni protocol. I don't have the results yet, but will report them when I do. Dr. Siskin doesn't use this "before" ultrasound to guide his procedure the following day. He’s simply gathering baseline data for comparison at a later time, if necessary.

Once the ultrasound was completed at about four o'clock in the afternoon, Kim and I were free for the rest of the day. My only restriction was that I couldn’t eat or drink anything after 3 am, in preparation for my 11 am procedure on Wednesday.

On Tuesday night Kim and I ate at the sports bar inside the hotel, and retired at a reasonable hour. It's difficult to be sure, but by my closest approximation I may have managed two hours of fitful sleep. I’m a calm and cool person during daylight hours, but I sometimes transform into an irrational worrier when I can’t sleep. Daytime Mitch is ruled by reason, logic, and optimism. Insomnia Mitch is more like an adolescent girl overly concerned with pimples and what the mean girls might say to her tomorrow. I have no control over Insomnia Mitch.  Luckily he doesn’t show up every night, only on nights when sleep is particularly important. 

In my next post I'll describe our eventful day on Wednesday- treatment day.

CCSVI Treatment - Let’s Give This One More Try

On Wednesday, March 16, 2011, I will undergo a second round of CCSVI treatment, in a determined if not desperate attempt to slow the progression of my MS. This procedure will be performed by Dr. Gary Siskin, the chairman of the Radiology Department at Albany Medical Center. Why am I putting myself through this? Haven’t I already been down this road?

Hundreds of people with MS in the United States, and thousands around the world, have now been treated for CCSVI. It's impossible to know the percentage of patients who have been pleased with the results. Many of the patients with positive outcomes (but not all) have shouted their success stories from the rooftops, and why not? They've made before-and-after YouTube videos. They've written blogs. They've been interviewed by magazines, newspapers, and local television stations. Most (but not all) of the people who have not benefited from CCSVI treatment have been quiet.

I'm one of those patients who has not benefited from treatment, and I’ve been forthcoming about it. In fact, I’ve tried to act as a spokesperson for people in my situation. Despite my own lack of improvement, I predict that when all the dust settles CCSVI will be recognized as a major factor in the etiology of MS. But I’ve asked my fellow MSers to bear in mind that a significant number of us are, at least for now, unable to attend the CCSVI party to which we’ve been so enthusiastically invited.

Because of my belief that CCSVI treatment is a key factor for so many people with MS, I volunteer for an organization called CCSVI Alliance. Their mission is:

CCSVI Alliance promotes education and research about CCSVI and its
relationship to Multiple Sclerosis (MS) by providing objective information
to the MS community, supporting medical investigations of CCSVI, and
fostering collaboration among patients, advocates, and professionals.

Please visit their website, at CCSVI.org, to donate or to learn more.

My CCSVI Diagnosis and Treatment Log details my first go-around with CCSVI treatment, exactly 364 days prior to this week’s second try. It seems increasingly unlikely that there is any delayed benefit yet to be felt from my March, 2010 treatment. My MS has continued to progress, unabated and with gusto, as if I was never treated.

It’s possible that the balloon angioplasty that Dr. Sclafani performed on me last year (or venoplasty, since we’re talking about veins instead of arteries) was only temporarily effective, and soon after treatment my veins reverted to their previous condition. This would explain my continued progression. The only way to know for sure is to undergo another venogram.

It's also possible that the work that Dr. Sclafani did has remained intact (and I have a feeling that this may be the case), but something else is going on. Perhaps there are other CCSVI- related problems that have not yet been identified and repaired. I may have previously undiscovered stenosis (restrictions) in my jugular veins or azygos vein which need to be opened, or I may have restrictions in other veins which Dr. Siskin can, or more likely cannot, repair.

But I must also entertain the notion that perhaps my personal brand of MS is simply not correlated with poor blood flow in the veins that drain my central nervous system. Although many MS patients are convinced of an almost universal cause-and-effect relationship between CCSVI and all types of MS, I am not.

Why am I again submitting to treatment which has not previously worked for me? In short, I have no better options, and I'm running out of time. I'm currently wheelchair-bound, because my legs don't work. A power wheelchair, especially my iBot, is a fine adaptation to compensate for an inability to walk. In other words, my quality of life is not greatly diminished for having been confined to a wheelchair. However, my arms and hands will soon be in the same condition as my legs. I don't know of any assistive device that replaces the function of arms and hands as well as a wheelchair replaces the function of legs. I worry that my quality of life, and so my enjoyment thereof, may not endure this next assault.

The second reason that I’m trying CCSVI treatment again is that I don't have any better options. There are exactly zero approved treatments for Primary Progressive Multiple Sclerosis. I have to do something. I can't just sit here and wait for brilliant people to study, debate, verify, and eventually agree on a treatment or cure for this disease.

I decided to employ Dr. Siskin on this second treatment for a couple of reasons. First, he has emerged as the most experienced CCSVI treatment physician in the United States, having performed several hundred of these procedures in the last year. Second, I heard him speak at a CCSVI symposium in Brooklyn last summer, and I was very impressed with his approach to CCSVI. He has admitted on several occasions that approximately 1/3 of his patients see no benefit at all. This is consistent with my observations. Third, this will be another highly qualified physician poking around in my venous system. Dr. Sclafani, the interventional radiologist who performed my first CCSVI treatment, is no slouch. But I hope that a fresh set of eyes may notice something the first set of eyes didn't.

I have only modest expectations for my procedure this week. As such, if I experience any improvements in my MS, you can be sure that it is not due to a placebo effect. I am a skeptic by nature (I don’t accept things based on faith or hope), but I’m not a pessimist (someone who always expects the worst possible outcome). I'm a fairly upbeat person. But how many times can I undergo experimental treatments for MS, and have them completely and utterly fail, before I learn to hedge my bets? If I had become emotionally invested in each treatment that I have tried over the years, I would have endured countless letdowns. I can't go through life setting myself up for these disappointments.

I'll keep you abreast of how my treatment goes. Wish me luck!

Which Would You Rather Have? Round Three – Progressive Disability Versus Ignorant Asshole Social Syndrome (IASS)

Image via Wikipedia

Last year I posted my first two rounds of the "Which Would You Rather Have" discussions. I compared progressive disability to sudden disability and to cancer.

Progressive disability is what I have. My particular version is called Primary Progressive Multiple Sclerosis (PPMS). I was diagnosed 9 years ago with the slightest limp. Now I spend all day in a wheelchair. I know some advanced MS patients who long for the days when they could sit in a wheelchair for hours on end.

There are ignorant people. We can argue about how much is due to nature, and how much to nurture, but it doesn’t really matter in the end. Ignorant people can’t comprehend how the world works, and have trouble grasping complex notions. They adopt overly simplistic or purely erroneous models, and they don’t seem to mind. But many ignorant people overcome their impairment by being decent. They may not appreciate the difference between circumference and radius, but they know good from bad, and strive to improve the lives of those around them. I am often frustrated by these people, but that speaks more to a deficiency (of patience and understanding) in me rather than in them. All things considered, I think I’d rather be a decent, ignorant person than have a progressive disability.

And there are assholes. These people simply don’t treat others with respect. They can be demeaning, dismissive, and rude. But not all assholes are necessarily bad people. Many are driven individuals who contribute to the greater good. Most CEO’s, countless brilliant scientists, and more than a few physicians I know are productive assholes. So I guess I’d rather be a productive asshole than have a progressive disability.

Then there are the ignorant assholes. They are the worst. The combination is synergistic. Ignorant assholes are wrong about things, and are obnoxious about being wrong. They do not contribute to society. In fact, the rest of us spend much of our time and resources undoing the damage inflicted by ignorant assholes. So, if I was magically starting over, and was given the choice of living a life that would include progressive disability or living a life as an ignorant, healthy asshole, then for the benefit of both society and my personal well-being, I’d say, “I’ll take the MS please.”

I must have some specific ignorant assholes in mind, right?  There are so many to choose from, but it’s hard to find a more appropriate example of IASS than the pastor and congregation of the Westboro Baptist Church of Topeka, Kansas, pictured above.  I challenge you to top that one, without choosing a politician (that’s just too easy). 

Spending Decisions

I was unsure how my disability income would be taxed, so I erred on the safe side and had Kim withhold more money from her paycheck than any reasonable person would. As a result, we received a rather large tax refund. We've since adjusted Kim’s withholding, so that we should have only a small refund next year, and each of her paychecks will be a bit larger going forward.

So, what should we do with the refund money: pay off credit card, home equity, or other debt; invest in an IRA; help the kids with college costs; or go on a cruise? Those are all good options, but we had another idea.

As I've mentioned in numerous posts, I probably won’t be able to drive my adapted van much longer. In fact, if we had not taken action last week, I was almost ready to hang up the keys for good.  But the critical problem isn't (yet) with my left hand which operates the adaptive driving controls in the van.  It's that I've become too weak to safely and smoothly accomplish the elaborate dance of transferring from my wheelchair to the driver’s seat (and back).

I've always known that I could have a power driver’s seat installed. Such a seat slides all the way in to the center of the van and rotates 90° so that I can easily transfer from my wheelchair to the driver’s seat, and then push a couple of buttons to place me squarely in the driving position.

I've avoided investing in this seat though, because I thought my left hand would be the reason I would eventually stop driving, and I didn’t want to spend the money unnecessarily. That was the thinking.

It's funny how your perspective changes when facing the imminent loss of something like the ability to drive, especially when you have a wad of cash burning a hole in your pocket. As you may have already surmised, I spent the tax refund on a new power driver’s seat for my accessible minivan (see photo at top). I'll now be able to continue driving until my left hand becomes too weak.

Down the road, will I look back on this purchase as money wasted? I will if I stop driving due to left hand weakness sooner rather than later. But I hope that I’m able to continue driving for a while.  If I’m so fortunate, I’ll consider this an appropriate use of a financial windfall in order to preserve my independence for a while longer. Only time will tell.

Many disabled people don’t have the financial resources to be faced with spending decisions like this, so I'm not complaining. I'm just explaining. When you have a chronic, disabling disease you’re forced to make absurd financial decisions regarding how much to spend on purely temporary efforts to preserve mobility. What price freedom?

When Kim and I were both working and pulling in decent salaries, I didn't hesitate to purchase snowmobiles, ATVs, guns, or other rednecky apparatus. Life is short, right? But now that my financial contribution to the family pool is much smaller, and so is the size of the pool itself, I sometimes feel guilty about spending money on disability equipment which will improve my quality of life (for a while) but that I don't absolutely need. It's just another dilemma- courtesy of my favorite little disease.

As I’ve written here before, although it is unfortunate that I need these assistive devices, the days that I’ve accepted crutches, a scooter, or a wheelchair were actually very good days.  Suddenly, I can do something better than I could do it the day before.  So I’m not regretting that I require a power driver’s seat, but I’m instead celebrating the fact that I’m still driving, and that it’s even a little easier for me today than it was yesterday.  

Oh, and I bought a new camera too, which I can mount on my wheelchair. Check back here for photos and videos.

My Crystal Ball

(Photo credit: circulating)

How many times have you wished for a crystal ball? It's human nature. We long to know what the future holds.

But what if you already understood that your prospects were bleak? Would you want to know precisely how bleak, or would that serve no useful purpose? Unfortunately, I'm not given a choice, because my crystal ball shows up once or twice a year, and when it does I am powerless to look away.

I don't get very ill, very often. But once or twice a year I'll come down with a fever that usually lasts 24 to 48 hours, and it knocks the crap out of me. That’s because when my body temperature rises my MS symptoms are exacerbated.

I've learned that my condition when I have a fever foreshadows my condition at normal body temperature after another six months or a year of MS progression. Frankly, I'd rather not know. The news is never good.

In fact, I was visited upon this past week by my crystal ball, due to a chest cold. I learned just how much more difficult simple tasks like eating, dressing, and transferring from my wheelchair will be in the coming months. It was a fairly unsettling preview.

I hesitate to burden you with this somewhat gloomy post, but I think it's important to remind everyone just what a crappy disease MS is. If you've read this blog for very long, you know that I'm a relatively upbeat and well-adjusted guy. I think I'm handling my challenges well. So don't worry, none of that has changed. I'm just being straight with you.

You may have heard prominent neurologists or pharmaceutical reps say that “it’s a great time to have MS,” or that “MS is a highly treatable disease.” This may be the case for some people with MS, but it isn't the case for those of us with advanced, progressive MS (except for better wheelchairs and easier internet navigation tools). We have no treatment. We have no cure. MS just sucks more and more every passing year. We cannot, as a patient population or as a society, be satisfied with the pace of medical research on MS.

A strange thing happened when my fever retreated last week. I didn’t so much lament my uncertain future as I celebrated my return to my current “normal,” which I have a renewed appreciation for.

I’m not exactly sure how we’ll get through each day a year from now, but I’m confident we’ll figure something out.

The Walkability Index, and Why I’m a Big Fan of It

I wrote two posts earlier, here and here, about the five houses that Kim and I have owned so far. With the last three houses, MS has been or at least should have been a factor in what type of home we purchased. Now, here we go again. MS is once more the impetus for a change in our living arrangements.

Where we live now is acceptable, just not optimal. The house itself is well adapted for wheelchair use. I have ramps, wide hallways and doorways, and a roll-in shower. The problem isn't the house itself; it's where the house sits.

Soon, I will no longer be able to drive. I gave up driving with my legs a couple of years ago, when they became too weak to operate the brake and gas pedals. Now that my arms are failing in a similar fashion, I won't be able to manage my hand controls for much longer.

Once I can’t drive a motor vehicle, living in suburbia will become a bit confining. I'd like to live in an area where I can use my power wheelchair to call on restaurants, parks, stores, and yes, even a bar now and then. Throw in a hospital, library, or chocolate factory, and that might just seal the deal. In order to meet this goal, I'll need to move from the suburbs to the city. That means no more barbequing, campfires, or even dogs (I can’t walk a dog multiple times a day).  Life is full of tradeoffs, especially a life with MS. 

As we evaluate various urban neighborhoods, we want to make sure that a given condo or house is in an area with a high density of the types of establishments I'm looking for. There is no wheelchairability index that I am aware of, but there's something almost as good. There is a walkability index. Granted, just because a neighborhood is considered very walkable does not mean it is wheelchair friendly, but at least it gives me an indication.

To find the walkability index for any address in the country, all you have to do is enter in the street address, city, and state at http://www.walkscore.com/. Within a few seconds you'll see a walkability rating between 0 and 100, as well as a map showing all the establishments that went into the scoring algorithm. The walkability rating at my current house is a putrid 12 out of 100. This puts it in the "car–dependent" category. Some of the neighborhoods we are looking at have walkability ratings in the 80s, which is "very walkable,” or in the 90s, which is a "walker's paradise.”

The good news is that I can be patient, theoretically, because my house is suitable, just not ideal. But in practice, this isn't really the case. My wife brings many admirable qualities to our marriage, but patience in situations like this is not her strong suit. Now that we’ve initiated the search process, she is scouring the earth to find new housing, and she won't rest until she does. So I have a feeling this will happen sooner rather than later, if for no other reason than the preservation of my dear wife's sanity.

Isn't it ironic, though, that somebody who can't even walk a single step would be so interested in living in a walker's paradise?

Ten Thought-Provoking Quotes

I'm fascinated by quotations. It's one thing to make your point in a paragraph, a chapter, or a book. But it's quite another thing to thoroughly articulate a philosophy in only a sentence or two.

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Happiness is not achieved by the conscious pursuit of happiness; it is generally the by-product of other activities. - Aldous Huxley

I've heard it said in so many ways- in order to find contentment you need to stop consciously searching for it. Live a good life, and with luck, happiness will come to you, probably in a form you did not expect.

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Those who agree with us may not be right, but we admire their astuteness. - Cullen Hightower

Ignorance loves company!

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The nice part about being a pessimist is that you are constantly being either proven right or pleasantly surprised. - George F. Will

I wouldn't call myself a pessimist, but rather a skeptic or a realist, which are just gradations of the same perspective. For example, many MS patients hear about potential treatments and instantly make the leap to HOPEFUL. I, on the other hand, prefer to maintain a healthy skepticism about potential treatments like CCSVI. I research the issue. I even submit to the treatment, all the while accepting that it may or may not work for me. In this way, my skepticism will either be proven (consolation prize), or I'll actually see some benefit (grand prize). But I won't get my hopes up, only to have them come crashing down. Although I am motivated by a general sense of hope, I am careful not to go “all in” on any specific prospect.

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Half of the modern drugs could well be thrown out of the window, except that the birds might eat them. - Dr. Martin Henry Fischer

I like this quote because it speaks to my growing dissatisfaction with the medical establishment, especially the pharmaceutical industry. Big Pharma does exactly what they're designed to do, which is to maximize profits instead of patient well-being. So it's not the companies that are broken; it is the system. The companies endeavor to meet their fiduciary responsibility to shareholders, within the constraints of the law- end of story. It's just that, and I hate to say this as a committed free-market advocate, capitalism simply is not the appropriate instrument to provide patients with the best drugs, treatments, and cures. Yet, I fear the situation would only be worse if the government ran the pharmaceutical industry. What a dilemma.

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Most advances in science come when a person for one reason or another is forced to change fields. - Peter Borden

Today, interventional radiologists and other vascular specialists, because of CCSVI, are interested in what has always been considered a neurologist’s disease- multiple sclerosis.

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Seek simplicity, and distrust it. - Alfred North Whitehead

Occam's razor is a principal which recommends selecting the competing hypothesis that makes the fewest new assumptions, or in essence, offers the simplest solution. This speaks to the first half of the above quote.

Yet, common sense and human experience tell us that if something is too good to be true, perhaps too simple, then we should distrust it. This speaks to the second half of the quote.

I love quotes like this, only five words long, which shed light on an essential human paradox.

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The fact that an opinion has been widely held is no evidence whatever that it is not utterly absurd; indeed in view of the silliness of the majority of mankind, a widespread belief is more likely to be foolish than sensible. - Bertrand Russell

Everyone knows that multiple sclerosis is an autoimmune disease, or is it? The popularity of a hypothesis does not render it legitimate.

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Too many people are thinking of security instead of opportunity. They seem more afraid of life than death. - James F. Byrnes

This is another quote that speaks to a basic conundrum of human existence. If we live our lives too conservatively, we may avoid the great negative results but also the significant positive results. Each individual seems to be preprogrammed with one tendency or the other. Due mostly to my internal wiring, and perhaps somewhat due to my personal experiences, I am uncomfortable with too much safety and more inclined toward taking what I consider a reasonable amount of risk. To each his own.

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There is a theory which states that if ever anybody discovers exactly what the Universe is for and why it is here, it will instantly disappear and be replaced by something even more bizarre and inexplicable. There is another theory which states that this has already happened. - Douglas Adams

I have a particular interest in the "why am I here" quotes, especially humorous ones.

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And I'll leave you with this unsatisfying quote:

1. Never tell everything at once. - Ken Venturi

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For Every 100 People That Walk by Me When I'm in iBot Balance Mode…

… I bet 30 of them think something like, “Wow, that is strange, but I’m going to carry on as if it’s nothing interesting at all. Must…not…reveal…amazement.” And they’ll say this to themselves for a wide variety of reasons: too cool, too shy, too polite, fugitive from justice.

When I’m zipping around in balance mode in my iBot, it’s quite a site. I have to believe that more is going through people’s heads than they let on. This post is my best guess as to what 100 average people are actually thinking when they walk by me.

If you’d like to see me in action, check out this video.

20 of these people that walk by me are mothers or grandmothers, and they straddle that fine line between sympathy and pity. "Well isn't that nice. The poor cripple at least has a fun buggy to drive around.” Their maternal expressions give them away.

10 say to themselves, “Cool wheelie!” And a few of those folks are even good enough to utter that phrase out loud. Unfortunately, it's probably the most common comment I hear. Sigh.

9 of them say to themselves, "I think I've heard of that wheelchair somewhere, but I've never seen one. Cool. I should say something to him…oops, too late. He's gone.” Then their thoughts return to whence they came…“I wonder why my cat’s butt goes up in the air when I pat her. If nobody buys a ticket to a movie do they still show it?” I can distinguish these individuals by their vacant stares.

8 of them are adolescents and teenagers who all think, “He’s so lucky. I want one of those!” Knowing what turmoil awaits them in the coming years, especially the girls, I don’t think I would trade places with them even if I could.

I suppose about 7 of them really and truly don't see me as out of the ordinary at all. They are completely preoccupied. If they're contemplating a potential cure for cancer, good for them. If they are replaying the latest episode of Jersey Shore in their heads, well that's just sad.

Based on the reactions of mothers with small children, who represent about 6 out of 100 people I encounter, they probably think to themselves, “Danger…unidentified object defying laws of physics…must …protect…offspring,” as they urgently pull their children well away from my path, the very act of which generates more injury and fear than I ever could have. It’s instinctive, though, so I get it.

In my mind, also referred to as my little dream world, 5 out of 100 are gorgeous women who think, “My goodness, I must have that handsome man in that sexy wheelchair.” But, alas, they always go home frustrated, as I’m a happily married man.

Another 4 out of 100 people that I run into are physically disabled themselves. You might think that because of our common challenges these folks would be more likely than others to show an interest in my unusual method of mobility. But this is not the case. Of these 4 people, 2 of them do not react to me in any way, and think to themselves, "Showoff!" The other two think, "Lucky bastard. I wish I had one of those chairs." Maybe they don't consider me to be one of them at all. Perhaps there is a secret handshake or password of which I was never informed?

And with about 1 person out of 100, I don’t have to wonder what they are thinking at all, because they come right up to me and engage me in conversation about my iBot. If I'm not in a big hurry, or in a bad mood, I try to make the effort worth their while.

Then there's the one-in-a-million person who would think, "Cool, a wheelchair exactly like mine!" In the two and half years I've owned my iBot, I’ve not yet encountered such an individual, although they are widely rumored to exist, as are unicorns and pharmaceutical companies who want to eliminate diseases rather than simply treat them for the rest of your life while making obscene profits all the while. But I digress…

You Can't Choose Your Relatives, but You Can Choose…

(Photo credit: Wikipedia)

“It is not bigotry to be certain we are right; but it is bigotry to be unable to imagine how we might possibly have gone wrong.”  - G. K. Chesterton

People are loyal, often to a fault. Year after year we stick with the same auto insurance company, the same favorite restaurant, and even the same brand of shampoo, no matter how much better the alternatives may be. I’ve used one bank for more than 20 years. Is there no better choice? I’m not sure. I’ve never considered the issue.  Whether it's a matter of comfort, loyalty, or laziness, we tend to mindlessly stick with what we know.

On the other hand, we have no control over other parts of our lives.  We can’t choose our relatives or our genetic makeup.  I’ve figured out that we men don’t actually chose which woman it is who knocks us over the head, drags us to her cave, and forces us to make babies and take out the trash for the rest of our lives either. But this post is about one area where we do have a choice, and where we should not settle for mediocrity.

Elaine recently wrote me at email@enjoyingtheride.com, regarding her husband who, like me, has primary progressive MS:

Dear Mitch, I am very sorry that the CCSVI treatment did not work for you.  We are desperate for the procedure to work, so I am hoping it does.  The one bad thing that has come out of our CCSVI experience is that my husband got the testing done and was scheduled for treatment, and then when we asked his local neurologist to support him after the procedure and monitor him the neurologist accused us of seeking "quackery", and said he would not support him after the procedure.  The MS center that he is part of has an extremely negative view of CCSVI.

When I read something like this, my blood boils.  It's one thing if a physician draws a line in the sand when a patient refuses proven treatments in favor of experimental ones. I may not agree with that, but I get it. What I don't get is this doctor. There are exactly zero FDA approved treatments for primary progressive multiple sclerosis. This doctor has nothing to offer his patient, yet he won't support the patient’s exploration of a promising new treatment. To me, that is unconscionable, and grounds for dismissal.

Yes, that's right. You can fire your doctor! He is supposed to work for you, with your best interests in mind. If he strays from that duty, then you are allowed to fire his ass (I use the masculine pronoun here, because it's usually the male doctors who are the most arrogant).

I’m not here to bash the entire profession, just the few doctors who have lost sight of their original calling.  I'm fortunate to have a neurologist who, although he is skeptical about the relationship between CCSVI and multiple sclerosis, accepts that he has nothing better to offer me.  He supports most of my wild ideas, and even suggests a few of his own.  This is how it is supposed to work.

So go ahead and keep writing checks to your underperforming insurance company and continue visiting the diner on the corner, but be choosy about your doctors. Don't hesitate to make a change if your relationship is not meeting expectations. It could be a matter of life or death.

Oh, I just received an update from Elaine. Her husband was treated for CCSVI last week, and is experiencing significant improvement. Hmmm. Imagine that.

Our Night Out on the Town

“If I only had a little humility, I'd be perfect.”
  - Ted Turner

I’m predisposed to enjoy solitary pursuits like reading a good book, sitting by the fire, or watching quality TV. But once in a while I get the urge to abandon my safe haven and venture into the disabled-unfriendly world beyond, usually at my wife’s prodding. Wednesday was one of those days.

Let me set this up first. Kim is as frugal as anyone I know, and she comes by it naturally. When her father visits, his conversational ice-breaker isn’t something like, “I’m thinking about getting one of the new BMW’s, but it has to come with leather seats.” It’s more likely to be, “Guess how much I paid for these sneakers?” And a good guess will be something south of $4.

One way that Kim scratches her penny-pinching itch is to compete in radio station giveaways, as opposed to actually purchasing concert tickets, for example. In recent years we’ve seen classic bands such as Styx, ZZ Top, and others, all with complementary tickets. This summer we even saw the still-lovely Cheryl Crow at Meadowbrook. In 1986, when we were newlyweds and living in far away and exotic Cleveland, Ohio, of all places, she won a $1,000 shopping spree at the store of our choice. At the time we possessed little more than student loans, the newfound thrill of living on our own, and a few wedding presents. We chose J.C. Penny. Some of the items we purchased included: two tennis racquets (the new aluminum kind), a softball glove that I used maybe 5 times, and a blue dress that Kim wore on and off for 20 years.

Last week, one of the local stations was giving away second row tickets to our favorite stand-up comic at our favorite historic theater. When prompted, we needed to be the ninth caller. For particularly appealing giveaways like this one, Kim will deputize me as her assistant caller. I had the land line, and she had her cell phone. We heard the cue and started dialing. I get nothing but busy signals call after call. Kim was both caller number two and caller number nine. How does she do that?

The evening of the show, I ascended into my iBot, like a king to his throne, and we set out for the city. The first challenge was parking. There are five handicapped parking spots very near the entrance to the theater. We were optimistic, but it was not to be. Five people, four and a half of whom were probably less disabled than me, beat us to the punch, fair and square.

The next cluster of handicapped parking spots was a couple of blocks away. We were able to claim the last one of those, but this required Kim to pull alongside a snow bank. When we opened the van door the slide-out ramp began to extend. It sliced through the middle of the snow bank like a hot knife through butter. The problem was that the ramp rested on top of the remainder of the snow bank, teetering as if it was a plank on a pirate ship. Luckily, despite having been an imperfect husband all these years, Kim didn't prod me out of the van with a sharp hook where her hand used to be. Instead, we retracted the ramp/plank, and Kim kicked away the bottom of the snow bank in her dressy boots. We re-extended the ramp, and I backed onto the sidewalk without incident. No splash, captain.

When we reached the theater lobby, I did what I love to do in crowds – I transitioned to balance mode in my iBot. Oh, the looks I get. Many people speak privately to one another, or so they think, as I go whizzing by. The most common remarks are uninformed expressions of amazement like "wow, look at that", or "cool!" I carry on as if moving about on two wheels in a crowded theater is as common as is walking down the street in three dollar sneakers.

I carry with me and occasionally hand out some semi-humorous, semi-serious business cards. I've been through a few iterations of them. Here is my latest one, front and back:



When Kim picked up the show tickets at the radio station a few days earlier, we were pleased that one of them was an aisle seat. Shortly after arriving at the theater, even though it was half an hour before the start of the show, we decided to scope out our seats to confirm that I would be able to transfer, and indeed I could. Next, we returned to the lobby to mingle and get some refreshments. I bought a warm, gooey, chocolate chip cookie. Kim secured a pinot noir, served up in a plastic cup.

It's not that I don't like sipping wine at the theater; it's just that I have to manage my bladder at events like this. Sure, there is a handicapped bathroom off the lobby, but if I've transferred to my theater seat, and Kim has already driven my chair to its out-of-the-way storage space, and then I have to use the bathroom, I would cause a scene in the second row of a comedy show (“hey buddy, you don’t have to laugh at my jokes, but do you really need to jump in your wheelchair and sneak off”), and I would miss about 20 minutes of the 90 minute show. So, no pinot for me.

As we were casually standing (and balancing) in the lobby, a very nice lady approached me. She asked if mine was the stair-climbing wheelchair, and I proudly responded that it was. Like so many people who introduce themselves to me, she revealed that someone close to her was also a wheelchair user – her husband. Because I am a member of the club myself, I’m allowed to ask, "If you don't mind, why is your husband in a wheelchair?"

"He has MS," she replied. Bingo! I love meeting other MSers or MS caregivers.

"Oh, so do I," I exclaimed, affirming our fateful kinship.

"He has a wheelchair too, but nothing like this one,” she continued. I felt a surge of self-satisfaction. "He's on a ventilator now, and is blind, so he doesn't get out much. He tried one of those sip and puff controllers on his newest chair, but because he has difficulty breathing into the tube or even seeing where he’s going, it didn't work out very well."

That wasn’t what I expected to hear at all. I had been trumped! In most interactions of this sort I'm the incredibly disabled person. I'm to be marveled at and admired for overcoming obstacles to make it to the theater, mingle with the healthy folks, and nibble casually on cookies. I’m the role model…the inspiration.

When somebody tells me that a loved one is in a wheelchair or has MS, I almost always hand them one of my business cards so that they can visit my blog and be impressed by my wit and charm, and my noble attitude toward life’s challenges. I couldn't, however, bring myself to give one of these cards to this wonderful lady. I didn't feel worthy. It seemed presumptuous of me. If I were to meet her husband, a man who has been places I haven’t, places I may or may not go myself someday, oh the stories he could tell. He would be the mentor, and I would be the apprentice.

This lady was remarkably composed when describing her husband's situation. Her voice didn't crack, and she maintained a matter of fact, yet kind, expression on her face. She's well practiced, like Kim. Taking her cue that it was socially acceptable to keep our happy faces on, I said, "Well, one of the best things about being in this iBot is that beautiful women like you, who wouldn't normally give me the time of day, come up and talk to me."

We all laughed and wished each other a Happy New Year. My business card stayed in my pocket. I regret that now. I should not have made the determination that my website was inappropriate for these brave people. It should have been their choice to make. But that opportunity has now passed.

As the lady walked away my wife turned to me and whispered, "I hate to hear stories like that." I knew exactly what she meant.