Monday, December 28, 2009

My MS Story Chapter 24- Life’s Little Indignities

Small White butterfly (Pieris rapae)
(Photo credit: Wikipedia)
“Humility is the ability to give up your pride and still retain your dignity.”

- Vanna Bonta

In the spring of 2005 our company merged with one from the West Coast. We were both very profitable and fast growing entities, which meant that we could afford to pull together the entire group for a long weekend. This gathering was ostensibly for team building, bBut what I remember most about the weekend was the staggering amount of alcohol consumed.  I can't recommend a party weekend as the most economical or otherwise prudent way to bring two groups of people together to bond. But for this youthful crowd, it was a stroke of genius.  

On a Friday night in October of 2005, we descended upon Callaway Gardens, in Pine Mountain, Georgia. We arrived as two disparate groups who were very suspicious of one another, as we had been bitter competitors in our previous corporate lives. After the meeting we were at least drinking buddies, and that is saying something. I know there were a number of people- the responsible adults - who turned in early and did not participate in the revelry. But they were in the minority. Most people remember it as an epic weekend. Some people don’t remember much about it at all.

I was concerned about mobility issues that I might encounter at this retreat, so I spoke with the meeting coordinator a few weeks ahead of time. Callaway Gardens is a sprawling complex. Our cabins would be in one area; the meeting rooms would be another. We would be tackling outdoor activities in a completely separate corner of the complex. She assured me that my mobility issues were being taken into account. We decided that I would rent a scooter to use on some of the longer walks at the resort. It turned out that two other employees had also mentioned mobility issues, so I volunteered to coordinate the rental of three scooters for the weekend.

When we arrived at Callaway Gardens the scooters were waiting for us. Unfortunately, only two of them were operational. We did a quick assessment and decided that Margo and I needed them the most. Steve had a bad knee, but volunteered to tough it out.

The first evening of dining and drinking went well for me. The only problem was sleeping. We were allowed to choose our own roommates if we so desired. Jeff, my best work buddy, and I decided to room together. But I didn't know about his snoring problem. Man, can that guy cut the zzz’s! The first night of sleep was fitful, but I think the alcohol helped. On the second night I slept on the couch in the living room instead.

After breakfast on Saturday we were instructed to gather at the front of the main building to board buses that would take us to the other end of the resort for the day’s activities. Although I had been told that the buses could accommodate scooters, this was not the case. Being the troopers that we were, Margo and I said that we would just drive our scooters down the road and meet everybody at the destination.

We were handed maps, and instructed on where we would all meet for the group photo. Margo and I set out down the road in our scooters (these were private paved roads around the complex). Before long the buses passed us. People waved to us. I really shouldn’t have, but nevertheless I did feel conspicuous zipping along at 5 mph in my scooter while everybody else except Margo was merrily transported to the destination on buses, like normal people. But I didn't say anything. Let’s call this Indignity Number 1.

Then we literally came to a fork in the road. We chose the road “less travelled by” and it sure made all the difference. When we finally got to the end of the road, there was nobody there. I looked down the hill. I could see people unloading from the buses at the location we would have gone to if we had taken the road more travelled. I should probably stop making my directional decisions based on a Robert Frost poem.

It would have taken us a long time to backtrack to the fork in the road and correct our error. But I noticed a promising path that worked its way down the hill, in the general direction of the buses. Margo and I set out along the path in our three wheeled scooters. It turned out to be another bad move- frying pan into the fire. The path ended about halfway down the hill, and there we sat. We observed from a distance as the other 150 or so folks all posed for the group picture.

Today, this photo is a highly revered and sentimental reminder of that magical weekend. It is proof of who was present for the now legendary meeting, and who the original members of the merged company were. Only Margo, me, and a couple of people nursing their hangovers were missing. The photo still hangs in a special place at the office. I have little doubt that one day it will be displayed in the Smithsonian Museum, in Washington, D.C. The caption will read- “The Coolest Corporate Retreat Ever”. My future grandchildren will exchange knowing glances with one another when Grandpa tells them that he was actually there- just didn’t make the photo.  “Sure Grandpa, did you walk on the moon too?”  Nudge, nudge, chuckle, grin.

Little shit-heads.
Back at Callaway Gardens, some folks eventually took notice of our dilemma and walked up the hillside to help us out. Missing the group photo and being assisted down the hill were Indignity Numbers 2 and 2a.

We then broke into our scavenger hunt teams- maybe six or eight people per group. Our task was to find boxes that had been hidden at various locations. I set out with my group in search of our boxes. It quickly became obvious to me that the boxes weren't hidden in the middle of the road, so I couldn't really be of much help in my scooter. I retired prematurely (hmm, is there a pattern here?) to the location where we were supposed to meet at the end of the scavenger hunt. Also present were twisted-ankle-guy, way-too-hung-over-guy, and eventually Margo. Not being able to help my team out in the scavenger hunt was Indignity Number 3.
After the conclusion of the scavenger hunt we were given the afternoon off to explore whatever part of Callaway Gardens we were interested in. Margo and I, and a few others, decided to visit the Butterfly Conservatory and an exhibit of live birds of prey. This was very interesting stuff. I give Callaway Gardens high marks as a destination for these types of meetings. .

Eventually it was time to return to our cabins and prepare for dinner. There were shuttle buses running, so Margo and I told our walking friends to just grab a shuttle and we would catch up with them at dinner.

With maps in hand, we set out for home in our scooters. Very soon, though, we both realized that we were running dangerously low on battery power. When we were just outside Margo’s cabin, her scooter died. Mine still had a little power, so I maneuvered it behind Margo, and pushed her and her scooter the last 50 feet or so into her cabin. I'll refer to this as Indignity Number 4.

We both charged our batteries and had no more mobility problems that weekend- no more indignities.

I've become accustomed to suffering various public indignities like I did that weekend. It's just part of my life now. I would be lying if I said that my self confidence is so highly developed that these situations no longer bother me, but I am improving all the time.

When I end up in a mobility predicament, which I occasionally do because I refuse to make my home into a cocoon, my situation may appear pathetic to the casual observer. But it’s only pathetic if I take myself too seriously.

As Vanna Bonta suggests in her quote at the top of this post, I’ve found that exercising a certain amount of humility is the best tool for surviving life’s little indignities.
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Thursday, December 24, 2009

A Touching Music Video

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

It makes you think.

Wednesday, December 23, 2009

My MS Story Chapter 23- There is life, and more Rituxan, after the trial.

(Photo credit: bfishadow)
I asked my local neurologist to set me up with $10,000 worth of the good stuff. This was a tremendous amount of money for me to spend for two infusions of Rituxan, each weighing only one gram, but I decided it was worth it.

Then I got some bad news. My information on the cost of Rituxan was wrong, by a factor of two. The amount was actually $20,000 for a pair of infusions, not $10,000. For me, this changed everything.  The extra $10,000 was the difference between feasible and not feasible, go and no go. Crap!

We moved on to plan B, or was it C? I lose track. We needed to make our case with the insurance company.  They should pay for the infusions, because I had proof that this treatment was very effective for me, whether or not it would work for the more general PPMS population. Maybe the phrase “make our case” is too soft. We were preparing to “go to war” with the insurance company.

Gun CrewThen the strangest thing happened. The battle that we were preparing for did not occur. Without a shot being fired, my insurance company pre-approved a pair of Rituxan infusions.  No questions asked. No data required. Undoubtedly, somebody at the insurance company screwed up. I suffered no moral dilemma though. If a clerk gave me five dollars too much change, then I would feel obligated to inform them of their error. But when an insurance company reimbursed me $20,000 for treatment that I desperately needed, even though I knew it was a mistake on their part, I followed the advice of the Steve Miller Band.  I took the money and ran.

We scheduled the infusions for August 22 and September 5, 2007. I would receive the IV in my own town, instead of two hours away in Worcester. These infusions would be 20 weeks later than they should have been if I had stayed on the trial schedule. I had wasted almost half a year in this process. After the infusions I waited to determine if Rituxan would once again stop or at least slow down my progression.

These two Rituxan infusions created a new problem. My commitment when I started the trial was that I would not take any out-of-trial treatments for my MS. Doing so would understandably corrupt their data. These two infusions of Rituxan were definitely out-of-trial, so I was informed that I had to withdraw 3 months before the finish line. At this point the trial was providing no benefit for me. That was a non-issue. But I was officially a quitter- something Mom and Dad and the President and Jesus told me I shouldn’t be. Despite the legitimate justifications for my decision, I was still disappointed that I didn’t finish.

I had my exit interview and examination with Peter. His final assessment reconfirmed significant disease progression beginning about six months after my last Rituxan trial infusion. We parted on good terms. Peter understood that I was simply doing what I had to do.

In a clinical trial, the doctors and nurses who administer the trial protocol on behalf of those nameless, faceless administrators are put in a difficult position. All of these clinicians, or at least folks like those I worked with at UMass Memorial Hospital, chose their career paths in part because they possessed the quality of empathy. As a requirement of their jobs, they listened to patients’ concerns, consulted with them about the best solutions, and shared emotionally in their success or failure. Medical professionals certainly must be careful of becoming too caught up in the lives of their patients, but these people are not robots. They are caring and thoughtful human beings.

But in a clinical trial environment these caring and thoughtful human beings are no longer allowed to consider empathy in their treatment decisions. They still care about their patients, but it doesn’t matter.  There is a protocol after all.

It's a perverse system. I'm not saying that I’ll never participate in another clinical trial, and I'm not advising other people to avoid clinical trials.  But if I ever do participate in another one I'll go in with my eyes wide open.

Although I try to be an understanding and forgiving person, I do harbor resentment towards my Rituxan clinical trial.  It didn't care that I was getting better on Rituxan. It didn't care that this was the first drug that had ever shown any hope for me. It didn't care that when the trial drug was withheld from me I started to suffer permanent, irreversible damage to my central nervous system. It didn't care about anything. But it wasn't the clinical trial’s job to care about its patients, other than to do them no direct harm. This cool detachment was possible because the trial’s administrators made sure to never look me in the eye, shake my hand, or even hear my voice. If the goal is to keep patients and scientists separated, physically and emotionally, our country’s standard clinical trial protocol is highly effective.

We don’t bother to keep scientists and their lab rats separated in this way, only scientists and their human subjects. I suppose, however, that there is less risk of lab rats eliciting unwelcome empathy from their researchers.

OK, I’ve beaten this dead horse enough.  Next week we’ll move on to some new subjects.

For the final installment in the series, click here.
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Thursday, December 17, 2009

My MS Story Chapter 22- Clinical Trial Endgame

Image via Wikipedia
I want to be clear.  I never met the people who screwed me over in this trial. I don't know their names. I don't know what they look like. I just know they screwed me over.

The people that I dealt with personally, the doctors and nurses and technicians, were all wonderful people. They just weren't holding the cards. Neither was I.

For some background on my experiences with this clinical trial, please read my previous posts:

MY MS Story #14- All in the Name of Science
My MS Story #16- The Clinical Trial Begins
My MS Story #17- There Will be Blood
My MS Story #19- Measuring the Immeasurable
My MS Story #21- A good friend turns into a coldhearted sonofabitch.

In the two extreme cases of a clinical trial, the endgame is straightforward. Often times it is clear even before the scheduled completion date of a clinical trial that the treatment is either not working or is actually doing some harm. In those cases the trial is stopped early or simply considered a failure at its conclusion. Everybody just packs up and goes home. Nice try. Good effort. We’ll get ‘em next time! This is not what happened in my trial.

On rare occasions a clinical trial may be a rousing success- high fives all around. When this happens sometimes the participants continue with the treatment in what is called an open label phase. After all, it would be cruel to just snatch a miracle drug away from long suffering patients who are finally getting relief, wouldn’t it? Plus, this gives the trial sponsors, usually the drug company, an opportunity to continue studying the long term effects of the treatment. This is how the trials worked out for several of the RRMS drugs that currently have FDA approval. I was hopeful that my trial would fall into this category, but it didn’t.

My trial endgame was in limbo. It was not an abject failure. It was not a rousing success. So there was no clear path forward.

I expressed an interest to my trial physician, Peter, about continuing with Rituxan infusions after the scheduled completion of the trial, but how? Peter indicated that he would be going to a conference of the trial doctors in a few weeks, and would let me know what he learned. We naively assumed that timely and compassionate decisions would be forthcoming.

For me the formula was simple. MS bad. Rituxan good. Must have more Rituxan.

I worked two parallel paths. I was hopeful that Peter would learn of an open label phase to the trial. But at the same time I was consulting with my local neurologist about setting up Rituxan treatment outside of the trial. Since Rituxan was not approved for MS, it seemed unlikely that my insurance company would cover it. I assumed the cost to be $5,000 per infusion, for an annual cost of $20,000.

I had my last two trial infusions of Rituxan in November of 2006. Like all the previous infusions, it went well. I felt that if I did not get another pair of infusions six months later then the effect of the Rituxan treatment would wear off, and my disease progression would return to the pre-trial rate.

The trial plan called for continued close tracking of the patients for a period of one year after their final infusion. The trusting soul in me assumed that this plan existed so that doctors could monitor for and react to any negative side effects. It was done, you know, for my safety.

The cynic in me believed otherwise. Perhaps this post-infusion period existed not for my benefit, but for the trial’s benefit, and by extension for the drug company’s benefit. Maybe the trial designers wanted to shore up their statistical case by demonstrating that two things occurred in the trial. People not only got better when they took the drug but also got worse again when they stopped taking the drug.

Had they even considered the possibility that in order to gather this information some group of trial participants, like me, would need to stop taking the only treatment that had ever worked for us?  I think it is easier for trial administrators to ignore these nuisance considerations when they have never met any of the patients face to face. Clinical trials permit nameless, faceless trial administrators to make medical decisions that would never be made by a compassionate physician treating a sick patient.

Probably it was a little of both- patient safety and data collection. I don’t mean to attack the trial administrators personally.  They are most likely decent people.  Our lovely system of approving new drugs is what elicits this heartless behavior from them.  

In April of 2007, about the time I would otherwise have received another pair of infusions, I had a routine appointment with Peter. I learned that the trial sponsor was still pouring over the data, and there was some hope of an open label study in…get this…January of 2008…maybe! That would be almost a year away, and well over a year after my last pair of infusions. I was not pleased with this information, because I expected that in the very near future my disease progression would resume with vigor (I was right). They were going to spend another year just watching and thinking and graphing and pondering! What amount of disability would I accumulate during that year? Nobody asked me.

Sure enough, almost on schedule, by July of 2007 I noticed that the disease progression had returned to the same rate it was at before the trial. I needed to get me some Rituxan.

I had another appointment in July with Peter. I shared with him my observations about the resumed disease progression. His testing confirmed it. For the first time ever, he measured a significant decline in my function, specifically my leg function. There was still no word from the drug company about an open label study. I told Peter that I might have to start Rituxan on my own, which would mean leaving the trial before its official conclusion. He understood.

I asked my local neurologist to set up a pair of infusions for me. I would pay the $10,000 cost out of pocket for these first two infusions. This wasn't an expense that I could easily support long term, but I just needed to bridge the gap until Rituxan got approved for treatment of MS, at which time my insurance company would take over the expenses.

Remember, with PPMS I'm not talking about symptoms that come and go. I'm talking about irreversible, permanent damage that was occurring slowly and steadily, like a Chinese water torture…drip, drip, drip. Every smidgen of disability that I have ever accumulated has remained with me. Given this reality, time was of the essence.

A one year wait for an open label study that may or may not materialize simply was not an option.

For the next installment in the series, click here.

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Sunday, December 13, 2009

Memories: Golf’s Cruelest Trick

Golf Green Island
(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).
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Wednesday, December 9, 2009

My MS Story Chapter 21- A good friend turns into a cold hearted sonofabitch.

Progression types of Multiple sclerosis
Image via Wikipedia
There are two obstacles to finding a treatment for Primary Progressive Multiple Sclerosis (PPMS). First, it appears that nothing works. Second, even if something were to work, I doubt that the scientists would notice it.

Here’s the problem. With the more common form of MS, Relapsing Remitting Multiple Sclerosis (RRMS), there are some clinical measurements that correlate with disease activity: the number of enhancing lesions measured by MRI and the number of relapses experienced over a given period of time. Because people with PPMS don't have enhancing lesions and don't have relapses, all we are left with is trying to quantify the change in overall level of disability. This is accomplished by measuring patients’ ability to perform certain tasks, as I described in My MS Story #19.

It's much more challenging, from a statistical analysis point of view, to draw conclusions from these PPMS tests than from the RRMS tests. To make matters worse, I don't think they were even measuring the correct tasks during my trial.

When I was participating in the clinical trial I never had any vision or cognitive problems, so measuring those types of tasks was meaningless for me. I didn’t have any disability in my hands during the trial, so the test where I placed pegs in holes didn't yield any interesting results. The only part of my body that was affected at that time was my legs. Even then, the tests that they did on my legs didn’t actually measure what was wrong with them.

If I came to the doctor’s office using my scooter, so that my legs were not tired, I demonstrated near normal strength in all my leg muscles. I could walk across the examining room, albeit a bit like a drunk. That's how they tested me- always fresh and well rested (no, they didn’t test me drunk). However, at this point in my disease progression the defining characteristic of my disability was not how strong my legs were when I was well rested, but rather how quickly my leg strength deteriorated during exertion.

These are some of the reasons why I wonder if researchers would notice an effective treatment for PPMS, even if it was staring them in the face. PPMS progression is just so difficult to measure.

Throughout the trial my “official” performance data on the various tests indicated that the disease was no longer progressing. In fact, on good days, I was supposedly getting ever so slightly better. For the first year or so, I agreed with this assessment.

Unfortunately, in the summer of 2006, a little over a year into the two-year trial, I noticed that my legs were becoming fatigued more quickly than they used to. But still this change in my condition did not show up in the trial data. At work and at home I started using two crutches all the time, instead of sometimes one and sometimes two. I was just too unstable on one crutch. This indicated definite disease progression, but still at a much slower pace than before the trial.

At this point I had received three of my four courses of Rituxan (six of my eight infusions). In November of 2006 I was scheduled for my last pair of infusions. Both the doctor and I considered this trial to be a success for me personally. We’d have to wait a while to see if the larger population of trial participants also benefited. By his measures my progression had stopped. By my measures it had slowed down significantly. But either way, the trial had been worth it for me.  Naturally, I began to wonder about how to transition from getting Rituxan in the trial to getting Rituxan outside the trial, ideally without skipping a beat.

I was very pleased with my trial experience. The doctors, the staff, and the facilities were first rate.  I was lucky enough to be receiving the trial drug instead of the placebo (a correct assumption as it turned out). These clinical trials, I thought, are a good thing both for the participants and for medical science in general. The results, although imperfect, were much better than anything else I had ever tried. The trial had become like an old friend to me.  I didn’t want the relationship to end.

But soon enough I would learn that clinical trials can be an uncaring, coldhearted sonofabitch.

For the next installment in this series, click here.
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Saturday, December 5, 2009

My MS Story Chapter 20- Sometimes I am the predator. Sometimes I am the prey.

Young Bambi: What happened mother? Why did we all run?
Bambi's Mother: Man was in the forest.

I forbade my children to watch that movie. I was OK with more realistic films like The Wizard of Oz, Gremlins, or Willy Wonka and the Chocolate Factory.

Hunting is one of the many physical activities that has been limited by my disability, but it is a particularly significant one for me.

If you didn't know any better you might envision hunting as a bunch of heartless, drunken idiots wandering around the woods in orange clothing, carrying high-powered rifles. It's not your fault. These hunters do exist, and most television and movie writers (guardians of our culture) have chosen to paint us all with that broad brush.

For me, hunting is a family affair- more precisely, a male family affair. Sure, my mother and grandmother both dabbled in hunting a bit. I took my wife a couple of times. She actually shot a grouse once, but never showed much interest after that. This is what the men in our family do in the fall- my father and my two brothers. Our newest generation of hunters (my son and my 3 nephews) is batting .500. Two boys are interested in hunting and two are not. The times, they are a changin’.

We take our hunting seriously, and we work hard at it. It is an opportunity for us to catch up with one another- male bonding I suppose. There is a social aspect to it as well, sometimes involving alcohol. Getting drunk in the evenings was certainly more common when we were younger, back when we owned that hunting camp. Below is a photo of Andy with a deer in front of the camp. But we (almost) never allow the drinking to interfere with getting up early and going hunting, and we never have that first sip of alcohol until the guns are put away for the day.


Hunting provides me with a means for connecting to the land and to the many wonders of nature, and also to my ancestry and my heritage. In many ways the hunting that we do today is not all that different from the type of hunting that our forbearers pursued for the past couple of hundred years (power wheelchairs, ATV’s, and precision optical scopes aside). The primary difference is that if I am unsuccessful, which I often am, then my family won’t go hungry. Today we treat the land that we hunt on and the game that we pursue with respect. We were taught this by our father, who was taught by his father, who was taught by his father...

Now that the hunting season in Maine has ended for another year, this is an appropriate time for me to reflect upon and share with you how my hunting life has changed since my MS diagnosis.

The first two years of hunting with MS (fall of 2001 and 2002) were not hugely different from my healthy years. At that time I considered the changes in my walking ability and my hunting ability to be significant. These changes, however, were relatively mild compared to what would come later. I couldn't walk as far in the woods as I used to walk, but we still went to the same locations as we had always gone and employed the same hunting strategies we had always employed.

In the fall of 2003 I noted a significant drop-off in my hunting ability. I encountered a lot of difficulty walking in the woods because I couldn't easily lift my legs up over obstacles like stumps and logs and rocks. I was relegated to hunting in the open areas, such as logging roads and fields. I stumbled often and even fell a couple of times. That’s not a good thing when you are carrying a loaded gun.

I did have some success in 2003 though. We try to shoot bucks when we can, but late in the season if we have a doe permit (which, like a moose permit, is based on a lottery), then we will try to harvest a doe. My friend Dean and his father took me to a spot where they knew some does were hanging around. With just one day left in the season I was able to shoot a doe. I didn't know it at the time, but that would be the last deer I would shoot (to date). Below is a photo of me with the doe.

Copy of doe03

In October of 2004 I went on my first moose hunt. In Maine, hunters enter a lottery for the small number of moose hunting permits, and my name was finally drawn (the only moose permit I’ve ever won). This was my coming out week too- showing my cane to my extended family for the first time. On the second day of the hunt we came upon a mature bull moose, at a close range, and I didn't miss. Below is a photo of me with the bull. I wish we would've removed all of that cabling and rope lying on top of the bull’s body before we took the picture. We used an elaborate, field engineered cable and winch system to get this 750 lb (field dressed) bull out of the woods. Maybe somebody clever can Photoshop those cables away for me.


That same November I began to deer hunt from an all terrain vehicle (ATV) for the first time. The good news was that it allowed me to get around to a lot of locations in the woods that I couldn't have accessed otherwise. It certainly didn't allow me to venture deep in the woods where I used to hunt. Those days were gone forever. The bad news about deer hunting from an ATV was that it made a lot of noise and undoubtedly alerted the deer to my presence.

Although I could no longer walk in the woods, the bio-kinetics of my condition at the time still allowed me to safely climb a ladder into a tree stand, or so I convinced myself. Instead of being a stealthy ground hunter, I became an ATV and tree stand hunter. It was not ideal, but I still felt as if I was a legitimate hunter, and I could shoot a deer at any moment. Below is a picture I took from my tree stand.


Later that fall I was thrilled to have my son, Zach, shoot his first grouse at the advanced age of 12. He was getting a little old for his first hunting success, and I was growing concerned. What would people think if he became 13 or even 14 years old without his first kill? See the picture below.


Fall 2005, 2006, and 2007 were very similar to 2004 in terms of my hunting abilities. Instead of the cane I was using two forearm crutches. I fashioned a special holder on the ATV so that I could bring my crutches with me. I still managed to climb up into tree stands in ’05 and ’06, but got stuck halfway up the ladder in ’07, and so I grounded myself.

In the fall of 2008 I started to have some difficulty getting into and out of the ATV. One time I fell as I was trying to get off. That season was pretty much a bust for me. It rained a lot, and I just wasn't able to schedule much hunting time due to work conflicts. I owned my iBOT in the Fall of 2008, and planned to hunt from it, but that didn't really materialize. I harbored mixed feelings about the hunting season just completed, as well as my hunting future.

I recently finished up the Fall 2009 season, and again I didn't shoot anything. I mounted an ATV only once, and it was a major chore for my friend to boost me in and out of it. I was able to spend time hunting with my brothers, Andy and Tom, my two friends both named Mark, and a few other hunters who were very motivated to help me out. I know that any one of these folks would rather have seen me shoot a deer than shoot one themselves. That's just the kind of people I'm lucky enough to know.

I essentially gave up on the ATV idea and decided to hunt from my iBOT.  But I must say, this year I became re-energized about hunting.  I had an enjoyable season.

The iBOT has a four wheel drive mode, which allows me to go places a normal wheelchair would never go, but of course not as many places as the ATV allowed me. The iBOT, however, is pretty damn quiet compared to the ATV. I used a brace to hold up my gun and provide for a more steady aim, despite my weakening arms. I went deer hunting eight times this fall, usually for only part of the day.  I think it was just bad luck that I wasn't able to harvest a deer. On four of those hunts I went alone.

“What would you have done if you had shot a deer, alone?" asked my lovely and sensible wife.

“That's what cell phones are for,” I replied, knowing that my brothers and friends would have been more than happy to help me take care of a deer, if I had been so fortunate. 

I worry about how much longer I’ll be able to hunt, but I have an inspiration. A gentleman that I've met online, Don, is more disabled than I am and is still out there chasing deer. Check out his website at If you spend enough time at Don’s website you may come across a picture of me with my bull moose.

I always find the end of each hunting season to be somewhat emotional. As I gather up all the things and put them away for another 10 months, I reflect back on all the hours I just spent in the woods. I'm usually ready for each season to end though, because it's a lot of work and it's time to get back to other responsibilities. For me, the end of hunting season is a great segue into the Christmas season, which the child in me still thoroughly enjoys.

But last weekend, as I was putting away the hunting gear, I found myself pondering a question that I hope is premature, but I just can’t know for sure.

Was this hunting season my last?

Tuesday, December 1, 2009

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:

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

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

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

A patient message board, called This Is MS, where the subject is discussed in great detail:

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

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