CCSVI- Diagnosis and Treatment Log Entry #1

(Photo credit: Wikipedia)

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

(Photo credit: The Fayj)

“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.

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.

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.

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

(Photo credit: Wikipedia)

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.

A Touching Music Video

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

It makes you think.

Memories: Golf’s Cruelest Trick

(Photo credit: jurvetson)

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

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

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

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

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

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

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

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

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

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

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

“Good morning, Jim.”

“Good morning, Mitch.”

“Jim, I have a problem.”

“What? Is it the mosquitoes?”

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

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

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

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

“I believe you Mitch.”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


Here are some more resources on CCSVI:

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

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

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


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

http://healingpowernow.com/


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

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


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

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


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


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

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

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

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

My MS Top 10 Lists

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


10. Accessibility problems in general, bathrooms in particular. 


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

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

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

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

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

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

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

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

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

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

The Top 10 Silver Linings of Having MS


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

10. I have time to keep up this blog.

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

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

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

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

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

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

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

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

And the number 1 silver lining of having MS is…

1.  Handicapped parking.  Enough said?

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

On Telling My Story Through the Internet

What am I doing here anyway?

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

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

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

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

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

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

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

I hope you'll keep reading.