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 exceptions, 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.