Monday, January 31, 2011

CCSVI Discussed on NPR

National Public Radio discusses CCSVI and features my good friend the Wheelchair Kamikaze.  Click here to listen.

Tuesday, January 25, 2011

When does MS Begin?

THIS POST HAS BEEN UPDATED HERE

A person's struggle with MS officially begins when they are diagnosed by a neurologist. But in order to receive this diagnosis, a patient must first experience symptoms for some period of time, often years. Therefore, each of us with MS owns a collection of memories which were baffling when they occurred, but later made sense in the context of our eventual diagnosis. And for each of us, there is that single, earliest memory of something unexplained.  When I recently came across this old team photo, I was reminded of my first MS memory.

In the summer of 1999 my wife and I coached our daughter’s Little League softball team. We instructed the girls on the basic skills and knowledge required of the sport, but placed more emphasis on fun than on winning. This was fortunate, because our team was not blessed with an abundance of natural athletic talent.

There were six teams in the league, and we finished the regular season in last place. In the playoffs, the best two teams were given first-round byes, so we went up against the number three-ranked team. Somehow we managed to win the game. Maybe all of our positive reinforcement was beginning to pay off.

That win “rewarded” us with a game against the number one, undefeated team in the next round. They had the best athletes and a serious coach who pushed them hard to win. Kim and I accepted a dinner invitation for the following night, the date of the next round of playoffs, because we knew this would be our last game of the season. But of course we didn’t share our doubts with the girls. Like all our games, we just reminded them to play hard and have fun.

I don't know what got into our girls, but they played inspired ball. We went into the top of the final inning trailing by only a 6 – 4 score. We rose to the challenge. Every girl started hitting the ball hard. We scored a run to pull within 6 - 5, and had the bases loaded with nobody out. It was thrilling. One of our best hitters was at the plate. What we lacked in talent, we made up for in enthusiasm, sometimes to a fault. Our dinner plans for the next day were in jeopardy, but we didn’t care.

In fact, the three girls on base were so excited that they forgot one of the basic tenets of the game, which we had taught them from the very first practice. Our batter struck the ball hard, but directly at the third base person, who caught it on a line for the first out. All three of our girls on base were so excited about how hard the ball was hit that they just started running. Kim and I yelled and pointed and waved our arms like crazy people, but it was too late. The third base person threw it to second base for a double play, and the second base person threw it to first base for an inning-ending, game-ending, season-ending triple play. Ouch!

We all gathered to congratulate the winners and celebrate our fun and exciting season. Soon, the trauma of the triple play was behind us.

So what does this have to do with my earliest MS symptom? A couple weeks before the playoffs, we were concluding one of our team practices with a fun activity. I had a stopwatch and was determining who could run around the bases the fastest. After all the girls had taken their turn, they insisted that Kim and I give it a go. Kim ran the bases about a second faster than any of the girls had, which was to be expected since she was a high school track champion.

I then prepared to dazzle the team with my manly speed. Remember, this was a mere Little League softball field, not a regulation baseball field. I cruised around first base and into second base, looking like the next coming of Willie Mays. But somewhere between second and third base my legs suddenly felt like lead. It was clear to me that I wouldn't be able to finish at full speed, so I made the split-second decision to turn my run into a joke, rather than reveal my infirmity. As I rounded third-base I faked a spectacular wipeout, and we all laughed and laughed.

Sure, it seemed odd to me that I couldn't run around the bases without becoming fatigued. But I just assumed that I was horribly out of shape. Of course it never occurred to me on that sunny and carefree day that what I was actually experiencing was the onset of a chronic, disabling disease that 10 years later would leave me in a wheelchair.

Wednesday, January 19, 2011

CCSVI Alliance Update

The debate continues regarding the relationship between chronic cerebrospinal venous insufficiency (CCSVI) and multiple sclerosis. Almost every day, some scientist or doctor speaks about or publishes something about this theory. Depending on your bias, you might conclude that the theory is either gaining acceptance or is losing steam. But one fact that seems indisputable is that CCSVI is getting more and more attention.

As you may know, I volunteer a bit for CCSVI Alliance. Their mission is:
CCSVI Alliance promotes education and research about CCSVI and its
relationship to Multiple Sclerosis (MS) by providing objective information
to the MS community, supporting medical investigations of CCSVI, and
fostering collaboration among patients, advocates, and professionals.
iset2011BannerThis week their president, Sharon Richardson, was invited to participate in the International Symposium on Endovascular Therapy (ISET), a conference attended by approximately 700 physicians from around the world. The conference publishes a daily newspaper of sorts, and mentioned us on the front page of the two issues below.

http://www.iset.org/files/content/docs/issue_2_LR.pdf
http://www.iset.org/files/content/docs/issue_3_LR.pdf

The CCSVI discussion at ISET has also been picked up by the other medical news sources, such as this one

Sharon reported back that CCSVI is THE hot topic at the conference this year. If you are not yet familiar with CCSVI, or if you want to see the latest information, please visit their website at http://www.ccsvi.org/.

Whether you are a proponent or a detractor, or are simply waiting for more information, I hope we can all agree that MS patients deserve to have this theory completely vetted. Dismissing it out of hand would be a terrible injustice, and perhaps an opportunity lost.

For my previous posts on CCSVI, click here.

Wednesday, January 12, 2011

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

English: A physician sitting at his desk.
(Photo credit: Wikipedia)
“It is not bigotry to be certain we are right; but it is bigotry to be unable to imagine how we might possibly have gone wrong.”  - G. K. Chesterton

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

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

Elaine recently wrote me at email@enjoyingtheride.com, regarding her husband who, like me, has primary progressive MS:
Dear Mitch, I am very sorry that the CCSVI treatment did not work for you.  We are desperate for the procedure to work, so I am hoping it does.  The one bad thing that has come out of our CCSVI experience is that my husband got the testing done and was scheduled for treatment, and then when we asked his local neurologist to support him after the procedure and monitor him the neurologist accused us of seeking "quackery", and said he would not support him after the procedure.  The MS center that he is part of has an extremely negative view of CCSVI.
When I read something like this, my blood boils.  It's one thing if a physician draws a line in the sand when a patient refuses proven treatments in favor of experimental ones. I may not agree with that, but I get it. What I don't get is this doctor. There are exactly zero FDA approved treatments for primary progressive multiple sclerosis. This doctor has nothing to offer his patient, yet he won't support the patient’s exploration of a promising new treatment. To me, that is unconscionable, and grounds for dismissal.

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

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

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

Oh, I just received an update from Elaine. Her husband was treated for CCSVI last week, and is experiencing significant improvement. Hmmm. Imagine that.
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Sunday, January 2, 2011

Our Night Out on the Town

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

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

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

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

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

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

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

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

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

livepreviewCA724Y2Ilivepreview back

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

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

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

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

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

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

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

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

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

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

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