CCSVI- Diagnosis and Treatment Log Entry #1

As I indicated in my previous post, this is my CCSVI week- diagnosis and hopefully treatment. I plan to update this blog frequently with details of my adventure. This post is installment #1.

My lovely wife and I made the trek from Maine to our hotel room- a 5 hour drive without traffic, bathroom breaks, wrong turns, etc. So, it was about 7 hours total. I have this hotel room reserved for 8 nights, but I’ll be looking for another room tomorrow. I’ve learned over time that the term “wheelchair accessible” is a very subjective one indeed. I’ve traveled a lot in my wheelchair, and this is the smallest “wheelchair accessible” room I’ve ever seen. I can’t even turn my chair around in it. I have to drive in, and back out. I won’t trouble you with a description of how complicated it is for me to use the bathroom.

But we’ll survive one night anyway. The internet access is good, and free, and the place appears clean.

I’ve had about 7 months to think about CCSVI, and today I had about 7 hours to really think about this. Here’s where my mind is now…

There’s a battle going on inside me, other than the battle between MS and my central nervous system, and other than the battle between the anxiety of traveling and the tranquility of my little plastic glass of shiraz. The battle I’m referring to here is between optimism for the events of the coming days, and realism about the prospects.

One part of me has optimistic expectations that this experience could affect my MS in a positive way. I don’t spend much time talking or writing about this part of me. I’m almost ashamed of it. But I must admit that this aspect of my being does exist, because if I didn’t have some level of optimism, I would not have spent hundreds of hours researching this, and I wouldn’t be sitting where I am tonight. This is the emotional, hopeful part of me.

The intellectual part of me is working hard to keep the emotional part of me grounded. My brain keeps telling my heart to guard its expectations. After all, this is an experimental treatment of a condition that is related to MS only theoretically (so far). If I let my hope and my emotions run the show, I could be in for a big disappointment.

So my state of mind is the product of these two warring factions in my head. So far they are fighting to a draw, which is probably a perfect situation from a mental health point of view. A little optimism is good for the soul. A little realism is needed to hedge against the possible negative outcomes.

What are some of the potential outcomes this week?

1. We could find no problems with my veins. Ironically, healthy veins would be a huge disappointment for me. I’d be back to the drawing board in terms of finding a strategy to fight my MS.
2. We could find problems with my veins, but be unable to fix them. This is disappointing, but less so than outcome #1. If I know I have problems, I can continue to research options for repairing them in the future.
3. We could find problems with my veins, and successfully address them surgically. This is the ideal outcome of this week’s work. But even then, there are three possible sub-outcomes (I just made that word up):
   1. The repairs could be permanent, and positively affect my MS (best sub-outcome).
   2. The repairs could be temporary, and re-repair would be required later (next best sub-outcome).
   3. The repairs could be permanent, but have no positive effect on my MS (worst sub-outcome).

What keeps my spirits up is that I’ve been wondering and wondering for so many months, and now I’m that much closer to having answers. Answers are good.

Schedule for tomorrow: MRV and then dinner with friends.

CCSVI- It’s My Turn

“There are risks and costs to a program of action. But they are far less than the long-range risks and costs of comfortable inaction.”
John F. Kennedy

I've been posting here for a couple of months about a new theory of the root cause of MS, called CCSVI. I’ve spoken to, called, emailed, blogged, private messaged, posted on message boards, Skyped, tweated, and Facebook chatted with so many people. I did all this to gain a better understanding of the relationship between CCSVI and MS, and I did this to find out what my options were for treatment. I am happy to say that the time for talk is over, and the time for action is here.

I met a wonderful group of MS patients who studied CCSVI even more than I did. They put me in touch with a doctor who is forward-thinking enough to start diagnosing and treating MS patients right now. Most of the folks in this group have already been treated for CCSVI. Now, thanks to them, it’s my turn.

On Sunday, my wife and I will be packing up the wheelchair van and driving to a “far away” hospital to spend a week or so with Dr. X, an Interventional Radiologist and Chief of Radiology at a major hospital. On Monday and Tuesday the 15^th and 16^th, I'll be going through some diagnostic activities (MRV and Ultrasound). On Wednesday the 17^th I expect to have a venogram and angioplasty (if warranted) on the veins that drain my central nervous system. No green beer for me on St. Patty’s day this year. I’m not exactly sure when I’ll be home- probably a couple of days later.

Dr. X asked me to keep his identity confidential, so that he is not inundated with requests that he cannot handle at this time. As soon as I am given the okay to disclose his contact information, I will.

Because many of you are interested in what I'll be going through with this experimental treatment, I plan to blog about the details of my experience on a regular basis -- hopefully at least once per day while I am at the “far away” hospital. 

Although I am very encouraged by the possible connection between CCSVI and MS, I have to be realistic about the chances that this will make a difference in my life. In other words, I am managing my expectations. This is how I operate. Others, in a similar situation, might effuse optimism. To each his own. Perhaps this will slow down or stop the progression of the disease. Maybe it won’t help at all. But one thing is certain. If I do nothing, then I know where this thing is headed.

For some basic information about CCSVI, and its potential relationship to MS, please read my previous posts on the subject.

My MS Story Chapter 33- The Lesions in My Spine Are Not Simply in My Head

We all employ coping mechanisms to deal with life’s misfortunes.

“I didn't want that job anyway. The commute was too far.”

“He’s just going through a midlife crisis. He’ll come crawling back to me."

“Although my legs are pretty much shot, at least my upper body works fine."

But what happens when these little stories we tell ourselves don't turn out to be true anymore?

For the first seven years of my battle with MS, there was a clear line of demarcation. I was taking a direct hit in my legs, but my upper body was unaffected. I held my breath. I felt that as long as the disease stayed in my lower body, then I could handle it. I didn't want to think about the possibility of my upper body becoming involved. Instead, I just held my breath.

Then the first signs emerged. I noted this in my journal:

9/20/08

Playing poker with Kim’s parents- seemed to have a little problem shuffling. Seems to be some dexterity issue there.

Not long after, I began to sense more changes:

10/20/08

I think I feel it in my hands a little when I write or type.

The steady deterioration continued. In January of 2009 I asked my employer to purchase a program called Dragon NaturallySpeaking, so that I could dictate to my computer rather than type (I'm using that program right now).

In the spring of 2009, when I took my handcycle out for the first few rides of the season, it became apparent that the problem wasn't only in my hands, but also in my arms. I couldn’t peddle my handcycle nearly as far as I had the previous summer. So, what did I do? I shortened my route, of course.

In May and July of 2009 I made the following observations.

5/29/09

I’ve noticed considerable deterioration in fine motor skills. Left arm/hand worse than right. Noticing that I favor right hand now.

7/8/09

I am noticing continued deterioration in my hands. I have some difficulty manipulating my fork and knife at dinner. Hands feel a bit numb, not like no sensation but rather like no control. I notice it with the remote control as well. It is as if I am manipulating objects while wearing a pair of heavy mittens.

Now things were getting serious. I mean- the remote control?!?! Today I’m relegated to being a right-hand-only clicker operator, which means I can’t be eating or drinking at the exact same moment I’m surfing the 900 channels on my big screen TV. This is a major inconvenience.

Other than handcycling, and channel surfing, I also enjoyed two other pursuits that required upper body strength. Here's what I noticed about those activities in the summer of 2009.

8/4/09

Went for short ATV ride with Zach, down by Carole’s house. I could still drive the thing, but due to arm and hand weakness it is not fun. I’ll keep one ATV for hunting, but won’t enjoy the riding, so will sell the other one.

8/16/09

Went Kayaking for first time this year. Getting in was OK. Could not paddle very far- 10 minutes. Getting out was a job, but I had 4 helpers.

Today, I continue to ride my handcycle, just not very far. I still have the kayaks. I'll probably give that a try again this summer. I’ll just need to make sure there are 3 or 4 people to help me get out of the kayak and back into my wheelchair at the end. I sold both of my ATVs.

I tried not to think about what life would be like if the MS spread to my upper body. Clearly, holding my breath didn't work. But now that I'm here, and now that it's happening, I'm simply dealing with it in the best way that I can. I suppose I could feel sorry for myself, but I don’t…I can’t. It’s just not in me. The sun still rises and sets. I still wake up, enjoy the day, and then go to sleep. I have difficult moments and I have joyful moments, just like everyone else.

As many of you know, I'm inspired by my late mother. She was a quadriplegic with some limited use of her arms and hands (due to an accident, not MS). Her crippled hands had a distinctive appearance that I’ll always remember. In recent months, my own left hand has, when in a particular position or while completing a particular task, looked very much like hers did.

I must admit, given the uncanny way in which my physical condition has grown to mimic hers, I’ve entertained the thought that my entire disability may simply be a psychosomatic emulation of my beloved mother. I wish it were so, because then I could be cured with a handful of visits to a shrink. But, unfortunately, the lesions on my spine are not simply in my head, so to speak.


Postscript: When I look over this post, I have some concerns. I want people to understand- to feel- what I'm going through. I try to be brutally honest. But there are two responses that I hope not to elicit. First, I don't want pity. That's not why I'm sharing my experiences. I still have a wonderful life. Second, I don't want to come off as self-righteous. Just because I am innately capable of dealing with my struggles in a positive way, doesn't mean that I think any less of people who are having a more difficult time dealing with their struggles. After all, my piece of mind is a gift that I have been given, not a mountain that I have climbed, or a merit badge that I have earned.

My MS Story Chapter 32- The Conclusion of the Rituxan Epic

I try not to make this blog too depressing. The subject matter is often difficult, yet my life is not cheerless at all. My goal is to be genuine, with just a dash of uplifting. I hope people feel better after visiting here, not worse, or at the very least they become more informed about disabled life. One of these days I'm going to tell a story with a plain, simple, happy ending. But, unfortunately, this is not that day.


Here is a brief recap of what I’ve already written about the Rituxan clinical trial:

Boy meets Clinical Trial
They fall in Love
Trial gives Boy Rituxan; Boy reciprocates by showering Trial with Data
The first year is great
The second year is not great, but still good
Trial forsakes Boy, leaving him wondering, “What did I do wrong?”
Boy strikes out into the cold, hard world, on a quest to recreate what he once had with Trial
Eventually, Boy does find more Rituxan
Boy rejoices!

There. You are up to speed. If you’d like the whole story, please read the previous posts about my Rituxan experience, which can be found here.

After the trial I did find more Rituxan. In September of 2007 I had my first two out-of-trial infusions. We were surprised that the insurance company had covered the $20,000 cost of the drugs. I don’t think they meant to. We caught them snoozing. Due to the confusion around my departure from the trial, these infusions came a full 20 weeks later than they should have come, if I had stayed on the “2 infusions every 6 months” trial protocol. Better late than never though, right?

My third and fourth post-trial infusions were planned for six months later- March of 2008. We followed the same process we had followed earlier to get approval for the two infusions. But this time the insurance company woke up and said, “Wait, this is not an approved treatment for MS. Request DENIED.”

We were prepared for this denial. My doctor and I dusted off the battle plan that we had put together in 2007. The first item of business was to get a letter from the clinical trial administrators indicating that I had been given the trial drug and not the placebo. We strongly suspected this, but written proof would be the crux of our argument to the insurance company. We had data showing that “something” stalled the progression of my MS during the trial period. Now we only needed a document stating exactly what had been pumped into my veins for two years. That’s a reasonable request, right?

I asked the trial administrators for just such a document…an email…some hen scratching on the back of a napkin…anything proving that I had been on the trial drug and not the placebo. My request fell on deaf ears. The study was not yet unblinded. Therefore, this information was under lock and key. March, the scheduled month for my next pair of infusions, came and went- so did April, May, and June. I made phone calls. I wrote letters. While I waited to hear back, more irreversible damage occurred to the myelin sheath around some of my nerves in my spinal cord. While I waited, I accumulated more permanent disability. But, the important thing was that protocol was preserved. That’s what I’ll always remember about this trial. The damn protocol was preserved.

Finally, in July of 2008 I received the written confirmation that I needed.  My doctor and I threw together an appeal package and submitted it to my insurance company for review. In late August I learned that my appeal had been approved. For a period of one year they would reimburse me for Rituxan, a total of 4 infusions, and then they would re-evaluate. I got my next set of infusions in September of 2008, six months later than I should have, if it had not been for the insurance company denial, which was exacerbated by the pharmaceutical company’s hoarding of critical information. Finally, things were looking up, right?

In March of 2009 I had my first “on-time” infusions of Rituxan in a long while. Maybe I was back on track. Maybe I could recapture the magic I had felt during the clinical trial a couple of years earlier. In August of 2009, before I could receive my next scheduled infusions, the insurance company re-evaluated, as promised, and denied me again. My doctor asked me if I wanted to appeal.

I took an objective look at my situation, and I had to admit that Rituxan had not provided me any benefit since the clinical trial had ended. I’d fought so hard for the six post-trial infusions that I had received. But it simply wasn’t working anymore. Was the problem that I’d lost momentum with all the delays? If I had stayed on the trial schedule, with no missed infusions, would the Rituxan have continued slowing my disease progression? I’ll never know.

Rituxan is not a drug anyone should take lightly. It is heavy duty stuff, with potentially harmful long term consequences. Given this, and given its ineffectiveness, I told my neurologist that I’d had enough. For a period of four years, this drug had been my big hope. I’d need to find some other hope now.

My doctor agreed. So the great Rituxan adventure had ended not with a bang but a whimper.

To summarize this last chapter of the Rituxan epic:

Boy finds Rituxan once more after Trial
However, Boy never again feels what he felt with Trial
Boy gives up on Rituxan altogether, and remains drug-celibate for a long, long time
With no treatment, Boy asks himself, “What now?”

Have I betrayed my childhood self?

I can recall the big questions I wondered about as a child (I was a frequent and vivid wonderer):

What will I be when I grow up?
Who will I marry? (Will she be beautiful?)
Where will I live?
What will my kids be like?
How old will I be when I die?

I remember some of the promises I made to myself as a child:

I will let my kids stay up as late as they want to.
I will eat dessert whenever I want to.
I will become rich.
I will become famous.
Nobody will ever tell me what to do.

I didn’t keep any of those promises.

Less evolved Mitch (Mitch of only a few years ago) sometimes felt guilty about failing to live up to his childhood expectations. More evolved Mitch understands that I hold no obligations to my childhood self. Screw him. He didn't know what he was talking about. He was just a kid.  Granted, he was a darn cute kid, but a kid nonetheless. 

We hold up our childhood dreams in false esteem, especially the famous few among us who actually achieve them- “ever since I first picked up a baseball I knew I wanted to pitch in the World Series.” We formulate these dreams to serve a developmental purpose, not as a blueprint for our life. Our childhood dreams are misguided because children cannot appreciate life’s complexities, and don’t comprehend its subtleties. The degree of wisdom necessary to do so is acquired later in life, if at all.

In retrospect, these are the questions I should have pondered as a child:

Will I be lucky enough to find real love? (I was)
Will I have my health? (I did for the first 38 years)
Will I lead a happy and contented life? (I have)
Will I have a fulfilling career? (for the most part, I did not)
Will I be a good person? (with some execptions, I think I have been)

And these are the promises I should have made to myself when I was a kid:

I will not feel that life owes me anything, as it is a privilege to simply be alive.
I will not waste precious time on jealousy and hatred.
I will remember to stop and smell the roses.
I will not take my good fortune for granted.
I will be a contributing member of society.
I will live each day as if it will be my last.
I will be true to my family and friends.
I will not be mean spirited.
I will be a lifelong learner.
I will be reliable.
I will be humble.
Even if life becomes difficult, I will persevere.

Would I have kept these promises? Let’s just say that at age 46, I’m still a work in progress.

So, have I been true to my childhood self? If he could have seen the future, he would have considered his (my) life to be a failure. But childhood Mitch just wasn’t smart enough to understand what a good life looks like. How could he have? He was just a kid.

Which Would You Rather Have? Round Two- Progressive Disability versus Cancer

Image via Wikipedia

"If you're going through hell, keep going." ~Winston Churchill

Last week I posed the question- which would you rather have, progressive disability or sudden disability? That post spurred a lot of interest, so here is round two.

First, some introductions:

Progressive disability is what I have. My particular version is called Primary Progressive Multiple Sclerosis (PPMS). I was diagnosed 8 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.

Cancer is an even more nebulous affliction than last week’s sudden disability was. The term “cancer” covers the spectrum from types that rarely kill, such as skin cancer, to types that often kill, such as lung cancer.

What are some of the similarities?

1. With both progressive disability and cancer there is a DAY, a singular moment in time, that is your day of diagnosis. For some patients, with either PPMS or cancer, there are hints or suspicions before diagnosis day. For other patients, it comes as a complete surprise (I was in the former group). Diagnosis renders your life a dichotomy- there is the life you lived before your diagnosis and the life you live after. It’s as if two different beings occupy your body, one at a time, handing off the baton on diagnosis day like track athletes in a relay race.
2. In each case, progressive disability and cancer, soon after diagnosis you are faced with treatment choices, none of which are very appealing or guarantee a positive outcome. In the case of PPMS the choices are either to treat the symptoms only, to try some unproven treatment to slow down the progression, or to do nothing. In the case of cancer the options are usually surgery, chemotherapy, radiation therapy, a combination of all three, or nothing at all.
3. With both progressive disability and cancer you disclose your new reality to family, friends, and often coworkers. Disclosure to those you hold most dear is a gut wrenching experience, where you do your best to put a positive spin on the situation to minimize the drama. They usually see right through you though.

What are some of the differences?

1. PPMS rarely kills- directly and suddenly anyway. In most cases it has the effect of shortening your lifespan by a number of years, but, with some exceptions, it is not in the strictest sense a killing disease. Cancer, on the other hand, always carries with it the cloud of potential death. Depending on the type of cancer, the prognosis ranges anywhere from “most people have a complete recovery from this” to “you need to get your affairs in order.” In summary, with progressive disability death is rarely part of the initial discussion. With cancer, death is usually part of the initial discussion.
2. Cancer is often cured. Cancer can be transient- visiting upon you for some part of your life, and if you survive, leaving you at some later point. People sometimes speak of their cancer in the past tense. PPMS is never cured. Once PPMS visits you, it doesn’t leave. People with PPMS are unable to refer to it in the past tense.
3. Similarly, people with PPMS don’t have the emotional highs and lows associated with cancer. We know we have it. Acceptance comes early. We never deal with the disappointment of hoping that just maybe we beat it, only to learn months or years later that in fact we didn’t. Cancer patients ride more of an emotional roller coaster than progressive disability patients do, at least in this regard.
4. Cancer is common. Everyone knows someone who has had cancer. Most of us have lost loved ones to cancer. Many among us harbor a palpable fear of developing cancer. On the other hand, many people don’t personally know anyone with a progressive disability like PPMS. I didn’t. It’s one of those conditions that few people waste any time dreading.

It is worth noting that unlike the sudden disability versus progressive disability discussion last week, cancer and PPMS are by no means mutually exclusive. One of the fears those of us with a relatively rare disorder like PPMS have is that, on top of our current struggles, we are as likely as anyone to contract some sort of cancer. Doesn’t that sound like a delightful combination?

So, which would you rather have- progressive disability or cancer? My response is a bit of a copout.  I would answer the question with another question.  What kind of cancer are we talking about?

I would choose cancer over PPMS if it was a type that has, oh, a 60% chance or better of survival. I would, however, choose PPMS over cancers with a 40% or higher mortality rate. But that’s just me. And, frankly, that’s just me today. Ask me tomorrow or next year, and I’m likely to give you a different number.

So, which would you rather have- progressive disability or cancer?

Disclaimer: Of course there is no competition here, and certainly no right answer. I’m writing these types of posts to raise awareness of the issues people like me face, based on my personal experiences, and the issues people with other conditions face, based on my limited understanding of their situations. Comments are encouraged. Disappointment, outrage and disgust are discouraged, but understandable.

CCSVI- What to make of the BNAC press release.

In my previous posts I predicted that last week’s release of the preliminary BNAC results could confirm Zamboni’s work, could disprove Zamboni’s work, or could fall somewhere in between. As the day of Dr. Zivadinov's announcement (BNAC direcctor, picture to the right) drew nearer, the unofficial “buzz” was that the results would strongly support Zamboni’s theory of CCSVI. My head kept my heart at bay though.  I didn’t get caught up in the buzz. Then, just a few days prior to the announcement, BNAC released a newsletter. Nowhere in the newsletter did they make any promises, but the text was sprinkled with statements like:

"We believe our CCSVI studies testing Dr. Paolo Zamboni’s controversial CCSVI theory will result in groundbreaking discoveries in the field of MS."

    And…

"I speak for the entire BNAC-JNI research team and Dr. Bianca Weinstock-Guttman to let you know that this particular research is having an impact like no other we have known."

This time I bought into the hype. I allowed my heart to seduce my usually scientific mind. In fact, because I wanted to be one of the first bloggers to comment on the significance of the findings, I got up early on the morning of the press release day and drafted perhaps the most inspirational piece I’d ever written.  I never published it, because the press release didn't shape up as expected.  I'm ashamed that I allowed my emotions to cloud my objectivity.  I suffered from temporary irrational exuberance. 

Instead of minimizing expectations ahead of an announcement, BNAC had inflated expectations- a classic public relations error.  The results were, by most accounts, mixed. This was the sort of announcement that any individual could spin to support their personal view of CCSVI. Here’s a sampling of what people wrote after the BNAC press release:

From the “this makes it more unlikely that Zamboni was right” camp:

"The whole notion of cause and effect is out the window," Dr. Mark Freedman, an Ottawa Hospital neurologist and leading MS researcher. As quoted by the National Post.

"There is not a shred of real evidence anywhere that messing around with these veins does anything to help MS patients," said Dr. Paul O'Connor, a neurologist at Toronto's St. Michael's Hospital, again in a National Post article.

Note to readers:  I include these two quotes not because I consider them to have merit, but rather to illustrate that there are vocal detractors to CCSVI theory, and that their statements are being carried regularly by the National Post.  These are quotes of the "negative sound bite" variety, and are not particularly helpful to advancing the debate.   

From the “this makes it more likely that Zamboni was right” camp:

“…what was reported in the Canadian Press was that, while the incidence of CCSVI in ALL MS patients was 55% (as the BNAC press release said), Zivadinov indicated that it was 80% in Clinically Diagnosed MSers….while the incidence of CCSVI MAY be 55% (or 65%, depending how you count it) for some sort of broadly defined category of MSer (and we don't know how that was defined) it is 80% for people who have been clinically diagnosed.” From a post at thisisms.com.

“Multiple sclerosis researchers have made an important breakthrough sparking hope of a cure for the disease.”- Sky News

And from the “we can’t read too much from this announcement” camp:

“The trial results released today by the University at Buffalo fall more in line with what would be expected of an MS breakthrough given science's current body of knowledge regarding the disease. While not the eye-popping numbers reported in the previous studies, the 2:1 ratio of CCSVI found in MS patients when compared to healthy subjects is still dramatic and exciting, and should give curious researchers much reason for continued and vigorous investigation of the theory.” WheelchairKamikaze.com

“I believe that the preliminary findings of Dr. Zivadinov and his colleagues in Buffalo are significant and support a link between MS and CCSVI. However, their early data are not as robust as Dr. Zamboni’s and their study raises many new questions.” Dr. Lorne Brandes at The Multiple Sclerosis Resource Centre.

“Over the coming months, much intense research will be underway attempting to answer the many questions surrounding CCSVI. This report out of the University of Buffalo is only the first of many to come, and it would be a mistake to draw anything but preliminary conclusions from it.” WheelchairKamikaze.com

So what is this blogger’s humble opinion? As much as I had hoped these results would solidify the concept that CCSVI is a major cause of MS, the information released so far from BNAC does not do this. And as much as I feared that there might be no researchers, other than Zamboni, who could show a relationship between CCSVI and MS, this is not the case either.

It is so very tempting to draw long awaited conclusions from this press release, one way or another, but there simply isn’t enough here to work with. The suspense is killing me, but we’ll need to wait a while longer before the whole picture comes into focus.  We need more information about this study, which should be available in April, and we need more studies, which are in the planning and funding stages now. 

I remain optimistic that one day CCSVI can be proven as a major cause of MS.  I’m grateful for all of the researchers and physicians around the world who are studying the relationship between CCSVI and MS.  I’m equally grateful for members of the MS patient community who are doing so much to advance the cause of CCSVI research- too many names to mention here.  You know who you are. 

Time, however, is not on my side. I can’t wait for the picture to become clear before taking action. I’m working my tail off to find a doctor who will diagnose, and if blockages are found, then treat me for CCSVI. Given the speed at which my MS is progressing, patience puts me at more risk than taking early action does.  CCSVI remains my best chance to halt the progression of this disease before it completely consumes me.

My MS Story Chapter 31- Handcycling

Despite my illness, and the challenges it presents, I still find moments of supreme joy in life. Sometimes I share these with my lovely wife, my family, friends, or even people I stumble upon in the community. Other times, I’m completely by myself.

I’m a person who thrives on occasional solitude: sitting by the ocean and watching the surface of the water sparkle from the setting sun; positioned on an old woods road, rifle in hand, senses piqued, waiting for a whitetail deer to reveal himself; reclined by the warm fireplace in my home, reading a book that puts into words some truth that had previously eluded me.

My handcycle is one of the best purchases I've ever made.  It has allowed me to enjoy exercise year round (I set it up on a trainer in the winter months). While doing my body some small amount of good, I'm improving the welfare of my mind and soul immeasurably. I feel alive and even temporarily healthy when I propel myself down a road or a path, completely under my own power, alone in my own little world.

When I began using the handcycle I could manage as many as 18 miles on a single ride. If my body had been stable, instead of getting worse due to MS, I'm sure I could've improved to at least marathon distance. But, instead, each successive year I've had to shorten my rides. Last summer I could only manage a couple of miles a day. 

Transferring from the handcycle to my wheelchair at the end of a ride is a feat requiring flexibility, dexterity, and strength- three characteristics I no longer possess. On more than one occasion I’ve ended up flat on my back in the driveway. When that happened it took the combined strength of both Zach and Kim, a bit of my engineering knowledge, some scrap lumber from the shed, and a roll of duct tape to get me propped up into my wheelchair again.

It’s still worth it. With MS, you have to pick your fights. I’m going to fight to maintain my handcycling for as long as I can.

On some of my rides I’ve had the forethought to bring along a camera. Here is a link to some pictures I've taken from my handcycle. (Once you get to the photo album, just click on the first picture to enlarge it, then use the arrow keys above the picture to move through the album).

Come on, spring.  I'm ready.

CCSVI- Breaking News

To view a press release about the preliminary CCSVI results from from the Buffalo Neuroimaging Analysis Center (BNAC), click here.

The correlation between CCSVI and MS is significant, but not as strong as the Zamboni studies had shown.  My guess is that this study will keep the momentum going for CCSVI, but it is not absolutely game changing.  This will take years to figure out.   

I'll be interested to read if others agree.  I'll report back here when I have collected feedback.  Another good place to monitor reaction is at this facebook page.

Quick Update

Wednesday, February 10, will be an important day for the MS world.  This is the day that the Buffalo Neuroimaging Analysis Center (BNAC) will announce results from the first 500 patients in their CCSVI study.  And, as I wrote in my previous post, all indications are that these results will be game changing.  I’m pretty much keeping this channel open for CCSVI news in the next few days.

For those of you who actually enjoy my babble about life as a disabled person, I’ll get back to that soon enough. 

There is one other issue that I will quickly address here. Since I stopped working in May 2009, and time has become an abundant commodity for me, I have connected with a group of people that I may not have otherwise connected with. Because of blogs, Facebook, Twitter, and sometimes even good ole’ email and telephone, I am now in touch with a network of MS patients and advocates like never before.

One of my new MS friends is better known as the Wheelchair Kamikaze.  His blog was one of the first I ever read.  When I began to envision Enjoying the Ride, I contacted Marc to learn about the world of MS blogging. He immediately opened up, gave me advice, and helped me get up and running.  I continue to correspond with Marc on a variety of MS and Red Sox issues.  Poor bastard is a Red Sox fan living in Manhattan.  Brave soul. 

To me, his blog remains the gold standard for medical patient blogs- heck, for all blogs.  He has become, in some senses, the de facto spiritual leader of the online MS community, but in a wholly nonreligious way. His blog has been nominated for "Best Patient's Web Log." Please give it a read, and if you agree with me go to this website and vote for Wheelchair Kamikaze. Sure, if you are one of those old fashioned voters who needs to consider all candidates before making a decision, go ahead and look at the other choices.  But if you are pressed for time just trust me.  Wheelchair Kamikaze kicks ass. 

The MS community is really pulling for Marc to win.  Thanks in advance for your vote. Note that you can only vote once per computer.

CCSVI - Get ready for the craziness to begin.

The Buffalo Neuroimaging Analysis Center (BNAC) is beginning to drop some not-so-subtle hints about the trial results they will release in mid February.  Dr. Robert Zivadinov, MD, PhD, wrote in his newsletter:

"We believe our CCSVI studies testing Dr. Paolo Zamboni’s controversial CCSVI theory will result in groundbreaking discoveries in the field of MS."

Dr. Zivandinov further states:

"I speak for the entire BNAC-JNI research team and Dr. Bianca Weinstock-Guttman to let you know that this particular research is having an impact like no other we have known."

Click here for a link to the newsletter. 

As more evidence of how well things are progressing at BNAC, they have announced a program to provide comprehensive CCSVI diagnostic testing, at two levels.  The CORE package costs $4500, and the ADVANCED package costs $6000.  Insurance companies will almost certainly not pay for this testing...yet.  Here is a link if you are interested in being tested for CCSVI at BNAC.

And finally, BNAC will be proceeding with a small study of actual treatment for correcting CCSVI. If you are interested in participating in this study, click here. 

I've written two earlier posts about CCSVI.  To read them, click here and here.

Which Would You Rather Have? Round One- Progressive Disability versus Sudden Disability

What I'm about to do is crass and uncouth. You may find it so disturbing that you will not only skip over this post but will stop reading my blog altogether. But it's a risk I have to take. I think about this stuff all the time, and I feel compelled to share my thoughts.

So which would you rather have- a progressive disability like Primary Progressive Multiple Sclerosis or a sudden disability like a spinal cord injury?

If you take a snapshot in time, depending on when you press the shutter release button, these two types of disability can appear to be very similar. For example, right now my situation resembles that of a person with an injury in the mid section of the spinal cord, a location where you lose most leg function but maintain a significant portion of your upper body function. If you took that picture two years ago I would have resembled a person with a slipped disk. If you take that picture a year from now, I'll probably resemble a person with a spinal cord injury much higher in his neck.

So here we go...

The advantages of having a progressive disease versus a sudden disability are, in no particular order:

1. If you have a progressive disability for, say, 40 years, then for some number of years you may have enjoyed relatively high function. I did for a few years. Whereas if you have a sudden disability for the same 40 years, you didn’t have any low disability years on the front end.
2. With a progressive disability you have plenty of time to mentally adjust to your situation. Typically at time of diagnosis disability is relatively mild.
3. With a progressive disability you have plenty of time to take tangible steps to adjust. You have time to put ramps in your house. You have time to shop around for mobility aids. You have time to make career changes in order to maintain employment.
4. Your world is not turned completely upside down in a period of seconds with a progressive disease. The trauma is not acute.

The advantages of having a sudden disability are, in no particular order:

1. Oftentimes, once you recover from the disabling event, your situation is somewhat stable. Although the disabling event was extremely unexpected and traumatic, you often get to a point where your level of disability is only slowly increasing or not increasing at all.
2. Because of item 1, when you employ an assistive device it can typically be used for a very long period of time. With a progressive disability, you have to stay ahead of the curve. You don't want to be buying assistive devices today that you should've bought yesterday and that will become inadequate tomorrow.
3. Once you recover from the trauma of the disabling event, both mentally and physically, the uncertainty in your life is much lower than the uncertainty in the life of a person with a progressive disability.

I realize that my characterization of these two conditions does not take into account all possibilities. For example, sometimes progressive conditions advance so rapidly that they look more like a sudden disability. Similarly, sometimes sudden disabilities continue to progress rather than stabilize, and take on some of the characteristics of a progressive disability. But that's not what I'm comparing here. I'm comparing the more classic presentations of the two types of disability.

So, those of you who are still reading, and don’t find this thought exercise completely abhorrent, what do you think? Would you rather know it is coming, and have time to make adjustments, or would you rather rip the Band-Aid off suddenly, so to speak, and perhaps be more stable going forward?

Pick your poison.

Next week…Progressive Disability versus Cancer.


Disclaimer: Of course there is no competition here, and certainly no right answer. I’m writing these types of posts to raise awareness of the issues people like me face, based on my personal experiences, and the issues people with other conditions face, based on my limited understanding of their situations. Comments are encouraged. Disappointment, outrage and disgust are discouraged, but understandable.

My MS Story Chapter 30- Taking the iBOT Home

There can be no more intimate relationship between a mechanical device and a human being than that between a wheelchair and its owner. The dread that we feel about the possibility of needing such a device may be best captured by the phrase- “confined to a wheelchair.” Understandably, I expect that the most common question asked of doctors when they deliver a diagnosis of MS is, “Will I end up in a wheelchair?”

For me, that question was finally answered in April of 2008, when I tried out the iBOT. Ya, it was time for a wheelchair- this wheelchair.

In June of 2008 I placed the order for my iBOT. Like any good American, I charged the whole damn thing to my credit card. I had some plans of how to raise the money for this expensive device (I certainly had no help from my insurance company), but I couldn't wait until I actually had the money in hand before proceeding. Remember, I was on a mission.

A few weeks later I learned that my iBOT would be ready for pickup and training on July 11. I awaited this day with a degree of anticipation that was similar to what I felt leading up to my graduation from high school or my first day on the job after college (but not on par with my wedding day or the birth days of my children). It was a big, big deal.

Notice that I count my iBOT pickup day among my best days, not among my worst. I’ve learned through my procession of assistive devices that the bad days are those just before you accept a new adaptation. Those days are a struggle. The first days with your new assistive device, even though they mark an unfortunate milestone, are all about newfound mobility.

The day that I picked up my iBOT I underwent 8 hours of in-depth training. Kim accompanied me so that she could become qualified as a stair climbing assistant. What is that? Well, if the stairs I want to climb have an adequate hand railing, then I can climb them solo. However, many stairs do not have a proper railing, and that's when I need an assistant. Kim trained for about four hours that day to become qualified.

Kim and I arrived first thing in the morning at the same rehab hospital where I had been evaluated for the iBOT a couple of months earlier. This time, both Kate (the lady who gave me my home demonstration in April) and Joanne (the lady who conducted the detailed evaluation in May) were present for the entire day.

I recently read a book that describes the training regimen for Navy Seals. I see some similarities between Seal training and iBOT training. Sure, my iBOT training was only for a single day, and although Kate and Joanne sometimes used their “serious voices”, they rarely made me do push-ups and almost never shot live ammunition over my head.

But, as with the Navy Seal training, my instructors did force feed copious amounts of information into my head in a short period of time and made me practice and practice until I could clean my rifle, I mean operate my wheelchair, in my sleep. At the end of the day they tested me to make sure that I had mastered the necessary skills. And, as with Navy Seals, I came out a different person than I had gone in as. In my case, I emerged as this Cyborg that iBOT users morph into- an organism that has both artificial and natural systems.

I was required to demonstrate certain proficiencies in order to qualify for advanced privileges with the iBOT. For example, I needed to show that I could climb stairs solo in order to have that mode enabled. If I was unable to demonstrate that proficiency, there was a way for Joanne to configure the iBOT so that I could only climb stairs with the help of an assistant (Kim). I passed the solo stair climbing test.

There are several top-end speed settings on the iBOT, configurable only by an authorized therapist. Of course, I wanted to qualify for the fastest speed. I don't know if Joanne was messing with my head or not (drill instructor that she was), but early in the day she stated that new users never walk out of there, I mean roll out of there, with the fastest speed setting enabled. Later in the afternoon I was thrilled when she told me that she would configure my iBOT for maximum speed. Thanks Joanne- the frightened looks I get today from innocent pedestrians are priceless.

The programming for the iBOT is unbelievably complex. The logic is designed to keep the operator from doing anything stupid or dangerous. There are permissives, alarms, and indicators that provide guidance, and sometimes even take over control of the device. Kate and Joanne would sometimes scratch their heads and say things like, “You’re doing something the iBOT doesn’t want you to do, but I’m not sure what it is.” They would always figure it out though.

At the end of the day Kim and I had to watch a short film that graphically demonstrated what can happen when you operate the iBOT improperly. The actors were trained stuntmen. So far, I’ve not emulated any of the spectacular crashes shown on that video.

After my final exam I signed a bunch of papers, and the training was over. Smiles all around. Then, on the drive home, it was just me, Kim, and the iBOT. Kate and Joanne were no longer there, approving or disapproving of my every move. This was not unlike the drive home from the hospital so many years earlier with our first child- wondering if I was ready for the added responsibility, but excited about the future.

What a great day that was. Kate and Joanne were consummate professionals. With the iBOT no longer being sold, I don’t know where Kate is now. I think Joanne is still working as a therapist at the rehab hospital. I wish them both the best.

Here's a picture of the four of us celebrating the big day.



Left to right: Kate, Kim, Mitch, my iBOT in balance mode, Joanne

Perhaps I exaggerated. They don’t look that scary after all.


Some Links


For more information on the iBOT wheelchair, please see my four previous posts:

This is Not My Mother’s Wheelchair (Part 1)
This is Not My Mother’s Wheelchair (Part 2)
What Would Mitch Do? or WWMD?
My MS Story #29- The Wheelchair Decision

Also, to see my iBOT in action watch these two videos:

Taking the iBOT to the Beach
Taking the iBOT to Two Lights State Park

My MS Story Chapter 29- The Wheelchair Decision

“For me, the wheelchair symbolizes disability in a way a cane does not.”

- Annette Funicello (MS since 1987)

By the spring of 2008 I had become a proficient scooter pilot. I drove the “blue streak” almost everywhere I went, indoors and out. I always carried the forearm crutches on the back, but I found myself using them less and less as my leg strength continued to deteriorate.

The more I used the scooter, the more evident its limitations became to me.  The seat was not designed for continuous occupation. Because I needed to keep two hands on the tiller when driving, it was difficult to carry any items with me. The tiller itself prevented me from getting close to desks and tables. Being a three wheeled scooter, it was tippy on uneven surfaces.

Neither did the scooter climb curbs, lift me up to eye level with standing people, operate in four wheel drive mode, or negotiate stairs.

I can't remember exactly how it happened, whether it was over a period of minutes or days or weeks, but eventually I began to consider graduating to a wheelchair. That would be a huge step for me. Thus far I had progressed from a cane, to two forearm crutches, to the scooter. These assistive devices each implied a certain level of disability; a wheelchair represented the ultimate level of disability, well mobile disability anyway. I suppose continuous occupation of a hospital bed represents the ultimate level of immobile disability.

I saw my first iBOT on a television commercial in the middle of the night. I perused their website, and I was instantly blown away. If I had to be in a wheelchair, this baby might make it a little more palatable. I signed up for a demo, and received a phone call a few days later from Independence Technology to schedule a home test drive.

On April 10, 2008 Kate showed up at my house. She unloaded the demonstration iBOT from her van and brought it inside. I anxiously transferred from my scooter to the iBOT. Kate pushed a flurry of buttons to calibrate the iBOT for my weight, and then we were off and running. We tried out both the standard mode and balance mode inside. Since I didn't have any steps in my house we moved to the back deck to play with the stair climbing mode.

In Maine, there’s a good reason that we refer to the month of April as mud season. My lawn was still soft from the recently melted snow. Nevertheless, we put the iBOT in four-wheel-drive mode and slogged all around the yard. I was at once impressed and horrified as I drove the iBOT over my lawn, leaving two parallel ruts in my wake (they disappeared after a few weeks).

Here’s my journal entry from that day:

“Had in home test drive of iBOT 4000. Must have it.”

That brief entry says it all. I was on a mission.

The next step in the process required me to spend a few hours at a rehabilitation hospital in New Hampshire. It was a two-way interview. I would spend an afternoon further evaluating the iBOT (this was enjoyable, but unnecessary). At the same time, an independent consultant would run me through the ropes to make sure that I was physically, mentally, and otherwise capable of operating this complex device.

I drove to the rehab hospital and met up with Joanne. She helped me learn all the features of the iBOT, spending a little more time than Kate had with each mode. Joanne scrutinized my every move and asked me a million questions about my condition, and about how I intended to use the iBOT.

I was, however, beset by a lingering doubt. Did I really need such a robust assistive device? I felt that all of my adaptations to date had been justified, and timely. But was I jumping the gun on this move? I mean, I could still walk short distances using my two forearm crutches. It was getting harder and harder all the time, but I still could. Was this the right time in my disease progression for a power wheelchair?

Near the end of our evaluation I shared this concern with Joanne. She agreed that I might not be an ideal candidate for this chair, but for a completely different reason. She was somewhat hesitant to recommend me for the iBOT, not because I wasn't ready for it, but because she worried that I might not be able to operate it for very many years, due to my worsening MS.

I was taken aback. “What you mean?” I asked, naively. “What could go wrong with me that would prevent me from being able to operate this wheelchair?”

Note to self: be careful what questions you ask, as you may not like the answers.

Joanne hesitated, and then said, "Well, since you asked…”

She methodically spelled out the declines in function that I might experience in the coming years (some of which have already come true). Suffice it to say this was a bit of a wake-up call for me. I never again worried whether I was ready for a power wheelchair. Today, like Joanne, I only worry about how many more years I can continue to enjoy the iBOT.

Joanne also pointed out that some power wheelchairs are designed to address the issues of more severely disabled people. The iBOT is not one of those chairs.

“OK. Thanks. But none of that bothers me,” I said. “I've got to have one of these chairs. What's the next step?”

I had made the wheelchair decision.


Links


For more information on the iBOT wheelchair, please see my three previous posts:

This is Not My Mother’s Wheelchair (Part 1)
This is Not My Mother’s Wheelchair (Part 2)
What Would Mitch Do? or WWMD?

Also, to see my iBOT in action watch these two videos:

Taking the iBOT to the Beach
Taking the iBOT to Two Lights State Park

*note that the iBOT is no longer available for sale

CCSVI- Is this the calm before the storm?

“With most men, unbelief in one thing springs from blind belief in another.”
  - Georg Christoph Lichtenberg

Image from CCSVI as a Cause of MS

I’ve been living with multiple sclerosis for over 8 years, but I’ve never seen anything captivate the MS community quite like Chronic Cerebrospinal Venous Insufficiency, or CCSVI.

This theory hypothesizes that the string of events in a person’s life which results in their having MS does not begin with an autoimmune response, as has been the generally accepted notion for many years.  The apparent autoimmune response is instead an overzealous immune system reaction to iron deposition in the central nervous system (CNS).   

The iron deposits come about because of low and irregular blood flow leaving the CNS through two types of veins- the internal jugular veins and the azygos vein (I’m getting close to a root cause here, so stick with me).  The poor blood flow is caused by various abnormalities, called stenosis, in these veins. Is MS really, at its core, a plumbing problem?  Wouldn’t that be something. 

For more details about CCSVI please read my previous post, watch this CTV video, or look over this Facebook page.

This concept has such upside potential that I find myself temporarily disinterested in all other MS research. For the moment, everything else is just so much background noise to me.

Dr. Paolo Zamboni of the University of Ferrara (Italy) conducted the basic research and coined the term CCSVI, and also designed an angioplasty treatment for the affected veins which he aptly named "The Liberation Treatment".  If his theory stands up to scrutiny, he’ll become our Jonas Salk. But his analysis has yet to be independently verified. In the medical research community, nothing counts as legitimate research if it is not verified by at least one other source, preferably several other sources. If we are lucky, the first independent verification is only weeks away.

The Buffalo Neuroimaging Analysis Center (BNAC), a branch of the University of Buffalo Medical School, has completed phase 1 of a study, looking at 500 patients, which attempts to correlate CCSVI with MS. Plans are to continue with phase 2 of the study, looking at an additional 1200 patients. To prove a correlation, BNAC must show that most MS patients have CCSVI, and that most healthy people do not. Their phase 1 report is expected in early February. That’s getting close.

Although this study will attempt to prove correlation between the two conditions, it will not address the issue of causation. Therefore, even if a strong correlation is indicated, the questions will remain- is it CCSVI that causes MS, is it MS that causes CCSVI, or is there another condition that causes both? Furthermore, BNAC will not address treatment options for CCSVI, although others such as Zamboni, Dake, and Simka have made progress in that area. The BNAC study’s scope is quite limited, yet its results may turn the MS world completely upside-down.

I’m not privy to any information about what the BNAC results will look like.  The data could demonstrate no correlation between CCSVI and MS. If this happens then CCSVI won’t be dead, but it will lose much of its luster (I’ll start looking at the other MS research once again, for example). The study results could be mixed- many MS patients could have CCSVI but not most. That scenario would call for more study. But the most intriguing scenario, although not necessarily the most likely, is that the BNAC study will confirm Zamboni’s work and document a strong correlation between CCSVI and MS. If that happens, the period of relative calm will be over, and the storm will commence.

If the BNAC study debunks this whole concept, I may have a future blog post entitled “CCSVI- how were we so easily fooled?”  But frankly, that outcome is just not very interesting to think about.  For now, let’s consider what the MS world would look like if Zamboni’s theory is confirmed by the BNAC study. 

Regarding CCSVI, and so many other things in life, there are two groups of people: boxers and briefs, democrats and republicans, supporters and detractors. In this case I’ll call them the Go Faster Group and the Take Our Sweet Old Time Group. Those directly affected by MS will see positive news from BNAC as justification to immediately accelerate medical activity in this area.  Those involved in MS, but perhaps in a less personal way, may prefer a more cautious and deliberate course instead.  

Who will comprise the Take Our Sweet Old Time Group?

Traditional (numbers driven) research statisticians

Traditional medical professionals

Traditional MS organizations

Insurance companies

Guardians of the status quo, such as Big Pharmaceutical (who makes millions of dollars a year on the assumption that MS is primarily an autoimmune disorder)

What will the position of the Take Our Sweet Old Time Group be?

• Correlation does not prove causation. Before anyone gets too excited, and certainly before anyone takes drastic steps like spending money on diagnosis or treatment of CCSVI, we need further study to confirm that CCSVI actually causes MS, rather than the other way around. This could take years.
• It is too early to start lining up patients for risky treatments. Any treatments must be part of carefully monitored clinical trials. If patients are harmed, then lawsuits could ensue.
• We have a good stable of drugs currently approved by the FDA for use by MS patients. This is not the time to abandon those proven treatments.
• There are only so many neurologists (traditional MS doctors) and vascular surgeons (potentially new CCSVI doctors). If we don’t move slowly these doctors will be literally overrun with requests for diagnosis and treatment. We need to prevent chaos. We must control events, by proceeding deliberately.

None of these plodding scientists and administrators will themselves be suffering from the ravages of MS. None of their central nervous systems will be melting away a little bit each day. None of them will be on the brink of crushing, permanent, and total disability. If they were experiencing these things, they would belong to the second group.

Who will comprise the Go Faster Group?

MS patients, their close family and friends

Sympathetic or forward thinking medical professionals

Sympathetic or forward thinking MS organizations

Sympathetic or forward thinking researchers

What will the position of the Go Faster Group be?

• If time were not an issue, we would agree that more data is needed. But we don’t enjoy the luxury of time. Every minute spent on further proving the theory before acting on it means more irreversible, permanent damage to our central nervous systems. For some patients, time wasted means the difference between walking and not walking, seeing or not seeing, even living or not living.
• There are well thought out models of how CCSVI might cause MS. Nobody has presented a theory of how MS might cause CCSVI. If it quacks like a duck, it almost certainly is a duck.
• The standard models used for approving new treatments are inadequate here.  This is a special case- a revolutionary idea. We need to break the mold so that we get treatment to as many people as possible, as quickly as possible, while still managing the risks to patients.
• The status quo is not acceptable. Today we have a bevy of treatment options, all of which involve sticking a needle into our bodies and injecting designer pharmaceuticals. These treatments have had marginal success in slowing down the disease, have caused any number of horrible side effects up to and including death, have cost us outrageous amounts of money, and have garnered huge profits for the pharmaceutical companies. Furthermore, these treatments don’t work at all for large subsets of the MS population (my subset, for example).

Hence, the gathering storm, which I reference in the title of this post. The Take Our Sweet Old Time Group will have their foot on the brake pedal, coasting warily toward the eventual solution.  The Go Faster Group will have their foot firmly planted on the gas pedal, racing toward a destination nobody even knew existed, trying to get there before it is too late.  When met with resistance, the Go Faster’s will become loud, obnoxious, belligerent, and indignant.  At least I hope they will. 

But it doesn’t have to be this way. If we partner with visionary leaders from governments, the MS patient community, and the medical community, we can create a system that balances the needs of all parties, and still gets help to chronically ill people as quickly as possible.  For example, there are at least two diagnosis and treatment studies waiting in the wings- one at Stanford University and the other at the University of British Columbia.  But clinical trials like these will only address hundreds of patients at a time.  We’ll need to treat thousands of patients at a time.   

I don’t know what the BNAC data will show when released in early February. I won’t even hazard a guess.  But if CCSVI is proven, and I am diagnosed with this condition and treated for it, how will I feel? I'll feel like I just woke up from a horrible nightmare.

My MS Story Chapter 28- Disabled Travel Experiences

“Thank God men cannot fly, and lay waste the sky as well as the earth.”
~Henry David Thoreau

I wasn't intimidated at all by flying as a disabled person, solo or with other people. I was grateful for the travel opportunities that my job afforded me. It's just that my legs didn't work, so I had to use a scooter for mobility, and I had to drive with my hands. Piece of cake.


One of my first solo trips with my scooter was in February of 2008. I flew from Portland, Maine to Portland, Oregon in order to visit our West Coast office. I had been responsible for certain East Coast Operations for a couple of years, but had just recently been given responsibility for the left coast as well.

For the first time in my life I made use of a handicapped taxi cab, in this case to transport me from the airport to my hotel in Portland, Oregon. Until then, I didn’t even know that all large cities had such taxis. The office was across the street from the hotel, therefore I didn't need a rental car. I spent two nights in Portland, and then took the same taxi back to the airport so that I could fly to Denver for a conference and trade show.

In Denver I rented a wheelchair accessible van with hand controls. I spent three days at this huge tradeshow and conference, putting a lot of miles on my scooter. I encountered no problems at all in Denver. From there, I flew to Las Vegas to spend the weekend with my good friend Dave.

Dave had a pickup truck, so my strategy was to disassemble the scooter into three pieces and load it into the back of his truck whenever we drove from point A to point B. Dave’s truck didn’t have running boards like mine did, so he had to give me a little boost when I was getting into the passenger seat. I learned that Vegas is an extremely accessible city if you have a power wheelchair or scooter -- not so much if you are just a slow walker. There is too damn much territory to cover.
 
Dave is a lifelong bachelor who has an Electrical Engineering degree, but chooses to make a very nice living from his love of music instead. Vegas is a great place to create music and enjoy the single life. Dave’s tendency toward serial monogamy has so far prevented him from falling victim to the more self-destructive temptations in Vegas. Speaking from experience, there is no greater deterrent to bad male behavior than the knowledge that a wonderful woman is waiting for you when you get home (and by wonderful I mean all-knowing and a little bit scary).

One evening we met up with Dave’s fiancé, Teena, and decided to walk up and down the famous Vegas strip to see what kind of fun we could stir up. Well, I scooted and they walked.

A couple of times during the evening, being the gentleman that I was, I offered the lovely Teena the opportunity to sit on my lap and enjoy a ride on my scooter. She always accepted. The last time I made this offer I took my hands off the steering tiller and told her that she was in charge of the driving.

Technically, that was a mistake. But the result was hilarious. She was a terrible driver, like a teenager on her first day behind the wheel.  It probably didn’t help that we had both put away a few beers. We zipped through the crowded casinos, Teena in my lap with hands on the controls, at a high rate of speed, with total disregard for the safety of everyone in our path. People were literally diving out of the way to keep from being run over.

If there are two groups of people who are given a free pass for reckless behavior like this, it is beautiful women and cripples. Even though we were completely out of control and laughing so hard that we could barely stay in the seat, nobody said a cross word to us. I’m sure there was carnage in our wake, but we never looked back. I still smile every time I recall that ride.

Just one month later, in March of 2008, I took an eight day solo trip to California. I rented a wheelchair accessible van with hand driving controls for the whole week. I spent a few days working out of our office in Long Beach and then spent a long weekend with relatives in Santa Barbara. On Easter Sunday we had a family picnic up in the mountains. If it wasn't for the wildfires, the earthquakes, the ridiculous real estate prices, and the fact that California is hopelessly bankrupt, I think I could live out my remaining days in Santa Barbara.

I had taken two major, solo trips with no difficulties. You might think that my travels in a scooter, using a wheelchair accessible van, could be embarrassing or leave me feeling conspicuous in some way. At the very least it must have been a huge pain in my ass, right? In fact, it was quite the opposite. Here I was, a guy with MS, traveling all over the country on business and pleasure, just like a normal person. These trips made me feel engaged in life.

Sometimes when I traveled alone in my scooter, and later in my wheelchair, airline attendants, hotel clerks, or car rental agents would ask me, “Are you traveling alone, sir?” I loved it when they posed that question, because delivering the response was so gratifying.

“Yes I am,” I would reply with great satisfaction.

Piece of cake.

My MS Story Chapter 27- Ramping Up My Scooter Use

“We must be willing to let go of the life we planned, so as to have the life that is waiting for us.”
- E.M. Forster


I had a system in place to support my occasional scooter use. This consisted of several ramps in my house and a standard minivan with the center row of seats removed.

But by late 2007, due to continued disease progression, I was ready for a promotion from occasional scooter user to frequent scooter user. This necessitated system upgrades in a couple of areas. The first thing we did was purchase a full-fledged wheelchair accessible van, with an automatic door and ramp system- no more manhandling that portable ramp every time I wanted to load or unload the scooter.

Wheelchair accessible vans can be very expensive (a cruel irony because there is a strong negative correlation between level of disability and level of income). A new van starts out at about $45,000. But we found a used one with low mileage for only $18,000. That was a stroke of luck. I won’t be so lucky when I buy my next one.

Another area that needed an upgrade was my workspace at the office. I spoke with my boss, a kind and considerate individual, and we commandeered an underutilized conference room. Just before the company canceling all discretionary spending due to the Great Recession, we renovated the former conference room into an office for me, with plenty of space to maneuver and park the scooter.

January 8, 2008 was significant- my first day at work with the scooter. Most of my coworkers had never seen me in this scooter (although many had seen me in a rented one at Callaway Gardens). I decided to announce my intentions via email to the entire office staff the night before my unveiling.  See below:






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Just wanted to give everyone fair warning that I’m going to start using my electric scooter when I come into the office.  I’m sharing this with you because I like most of you, and think you deserve to know a few things about me and my scooter:

1. It goes faster than you walk, and it is quite stealthy.  I apologize in advance for anyone whose toes I run over.  It has a horn, but I’ve disabled it so I won’t be inclined to honk at people who are slowing me down.       
2. Although it will be very tempting, please do not call “shotgun” and jump on the back of the scooter for a free ride to the coffee machine or copier.  A couple of folks have tried that and yes, the front tire of the scooter can come up off the ground.  And if you abscond with my scooter for some sort of a cross-office trek, you do so at your own peril.  It’s not as easy to maneuver as you might think. 
3. Yes, you may still see me use the forearm crutches from time to time, but I must tell you that the thrill of moving faster than everyone else, instead of slower than everyone else, and the ability to actually carry things other than myself, usually results in more scooter use and less crutches use. 
4. Louie, please do not don a mask, grab a machete, and do donuts with my scooter in the parking lot.  It will only scare the children next door….again. 

Thank you,


Mitch
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Some explanations are in order. First, I purposely made an effort to keep the email lighthearted and humorous. I wanted to set people at ease. I’m no Jerry Seinfeld, but I’ve found that the judicious use of comedy can be effective in keeping the “aw, poor Mitch” comments, or even similar private thoughts, to a minimum.

Regarding item 3 of the email, I correctly assumed that I would favor the scooter over the crutches, but I didn’t appreciate the extent to which that would be true.  After the first day that I brought the scooter to work, I can’t remember ever using the crutches in the office again.

And finally, who was this Louie guy, and why did he like scaring little kids with machetes? Interesting story…

I mentioned in a previous post that this was an office composed primarily of young professionals. As such, we celebrated Halloween with vigor, including an annual costume contest. One Halloween morning when I drove into the office, Louie, our IT guy, was riding a small motorcycle around and around the parking lot, wearing a full rubber mask and brandishing a machete in his hand. It was hilarious. Even though I couldn’t see his face, I knew who it was.  This was vintage Louie. 

However, the child day-care center across the street from us saw it differently. It turns out that Louie’s goodhearted attempt at celebrating Halloween scared the crap out of the children; at least that's what the cops told us when they stopped over to investigate. Who knows, maybe the kids were actually delighted and only their overprotective parents were afraid?  Either way, there was no harm done.

My aforementioned boss worked out of our Ohio corporate headquarters.  I had copied him on my little email announcement.  He replied by complimenting my humor, but then expressed concern about my health. This was a highly visible milestone in my disease progression, after all. Here was my response to him.

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I appreciate your concern.


As long as the symptoms stay in my legs I’ll be good to go.  I’m lucky to have a job that suits my ailment well.  The office environment with occasional travel is very manageable for me.  However, if the MS starts spreading to the rest of my body I’m screwed.  There is no way to predict if it will stay south of the belt or migrate up.


We all have great uncertainty about what our futures hold.  Any of us can be stricken with a disease, hit by a delivery truck, or killed by terrorists at any moment.  The primary cause of my uncertain future is just there for all to see.  That’s the only difference.


So Carpe Diem!


Thanks,


Mitch
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Since 2008 the MS has indeed spread to my upper body.  Therefore, I must decide to either accept my statement above or reject it.  Unfortunately, I believe that I saw things clearly back then.  I am, in many ways, screwed.

But, as Forster suggested,  I have let go of the life I had planned, so as to have (even embrace) the life that is waiting for me.  What other choice do I have?