Monday, December 27, 2010

The iBot’s, and Mitch’s, 15 Seconds of Fame

IMG_1920I think it is supposed to be 15 minutes of fame, according to Andy Warhol, but you take what you can get, right?

A couple of months ago I was contacted by a producer for the History Channel show called Modern Marvels.  They were doing a piece on the Segway (a cousin of the iBot wheelchair that I own) and wanted to license some of my iBot footage

Of course I agreed.  Any publicity for the iBot is welcome.  I'm working with a group of people to try and save the iBot from extinction (click here).  I made my case with the producer that the iBot technology and the iBot story were much more compelling than the Segway technology or the Segway story.  I didn't get anywhere though. 

So the piece recently went live.  Click here to view it.  The Segway story (which is good, just not as good as the iBot story would have been), begins at time 11:35.  My brief appearance (if you look quickly you’ll see Kim too) begins around 14:20.  

So it was cool to be on the History Channel, but I want more.  I want the iBot technology and the iBot human interest story to be told on Nightline, or 60 Minutes, or made into a full length documentary.  The world needs to hear the story of how disabled people were given an incredible gift, only to have it unceremoniously ripped away from them. 

Who do I call?  How do we get this story told?

Monday, December 20, 2010

Merry Disabled Christmas 2010

A christmas tree.Image via WikipediaThis year I endured disabled surgery
And read disabled books
I contributed to a disabled charity
And thwarted disabled crooks

I sailed on a disabled cruise
And piloted my disabled iBot
I sat for disabled interviews
And the good disabled fight, I fought

I starved myself on a disabled diet
And took a disabled shot at a deer
I appreciated nature, and disabled quiet
And quaffed many a disabled beer

I hand-peddled my disabled bike
And hand-drove my disabled van
I spent disabled time with people I like
And I was a loyal, disabled, sports fan

I spent too much money on disabled wheelchair parts
And I made many a disabled friend
I touched a few disabled hearts
And a thousand disabled emails, I did send

It’s not that life is unfair
As you know, I’m not one to complain
You play the cards that are dealt you
If you live in the jungle, you better enjoy the rain

So during this holiday season
I urge you to seek out contentment
Don’t spend time searching for a reason
To feel self-pity, jealousy, or resentment

I’ll end my cryptic verse right here
And offer this sentiment to those most dear
I wish you a Merry Disabled Christmas
And a Happy Disabled New Year!
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Sunday, December 12, 2010

CCSVI Alliance- End of Year Appeal

I know that this is a difficult financial time for many folks, but if you are inclined to donate to a charity before the end of the year, please consider the organization that I support, CCSVI Alliance









Since their inception nine months ago, they have worked to become a respected patient resource for the exploration of CCSVI. Chronic Cerebrospinal Venous Insufficiency (CCSVI) is a condition characterized by abnormalities in the veins that drain blood from the brain and spinal cord. Research has linked this condition to MS. A pilot treatment study indicated that CCSVI could be corrected for many patients with an angioplasty procedure, and that once corrected, MS symptoms and relapse rates may significantly decrease for many patients.

MS patients such as Susan, who was diagnosed with MS ten years ago at the age of 40:

“The diagnosis was devastating, but at the same time I was relieved to finally learn that the severe vertigo, dizziness, nausea, heat and cold sensitivity, overwhelming fatigue, and numbness from my waist down had a name.” In 2010 Susan learned about CCSVI and decided to have her veins evaluated. She learned she had two areas of stenosis (narrowing) in her left jugular vein and one in her right jugular. Susan had her jugulars and Azygos veins treated. “Alone in my kitchen, finally I tested the waters with my new blood flow. First I tried walking heal to toe, something I have not been able to do for over ten years. I did it with ease!!! I tried balancing on one foot and then the other. No problem! As the days continued I noticed my energy level was greatly improved. I had decreased neck stiffness, was able to turn my head with ease, and my cog fog was gone. I was able to maintain a thought pattern and carry on a conversation. My heat intolerance was also greatly improved. I went outside in 100F weather and didn’t get dizzy or fatigued. Today, four months after treatment, I am now able to accomplish 3-6 daily tasks as opposed to 2-3. The other day I got to the top of the stairs and stopped, realizing that something was different. Then I figured it out. I had run up the stairs, like I used to! The improvements seem to keep on coming. Now, when someone compliments me on how good I look, I can honestly say, “I feel GREAT!” something I haven’t been able to say in over 10 years.”

CCSVI Alliance is working to assist patients like Susan and their families, and support the physicians interested in helping them. The Alliance provides a comprehensive website, http://www.ccsvi.org/, with clear and objective discussions of CCSVI research, diagnosis, and treatment. All medical content has been reviewed by a world-class team of medical professionals. The website also offers resources to assist patients in discussing CCSVI with their medical team, as well as patient perspectives like Susan’s and FAQs. It provides a database of research abstracts, links to all IRB and N.I.H. approved CCSVI clinical trials and a growing catalogue of exclusive video interviews with some of the world’s leading CCSVI scientists and treating physicians.

CCSVI Alliance works with scientists, interventional radiologists, vascular surgeons, and neurologists, to foster a multi-disciplined collaboration. CCSVI Alliance is a member of the Endovascular Forum, http://www.endovascular.org/, where it hosts a CCSVI group for the professional and medical community. Recently, the Alliance was recognized by the National Multiple Sclerosis Society (NMSS) as a valuable, balanced, and accurate resource for people affected by MS, who are seeking information on CCSVI and related treatment. As a result, ccsvi.org is the first CCSVI organization linked to by the NMSS. In January 2011, CCSVI Alliance will make a presentation at the International Society of Endovascular Therapy medical conference, http://www.iset2011.org/.

Through these efforts CCSVI Alliance helps drive an urgent but coordinated effort to advance CCSVI knowledge and unravel the mystery of its link to MS. Help us find out more about CCSVI and its promising treatment, which may be helpful for many MS patients, by contributing today!

Donations may be made at http://www.ccsvi.org/ under the “Donate” tab or by mailing a check payable to “CCSVI Alliance” to:

CCSVI Alliance, Inc.
22 Tommys Path
Northford, CT 06472

Your giving will bring help and hope to people like Susan and others in great need, living with MS. Thank you for your generosity and kindness.

Monday, December 6, 2010

I Was Interviewed About My CCSVI Experience

I was interviewed by a Canadian magazine about my experiences with MS and CCSVI. The overall story starts on page 16. My input is on pages 34 - 36.  Click here to read.

Tuesday, November 30, 2010

A New Way to "Enjoy the Ride"

If you would like to receive an email copy of each new post at Enjoying the Ride, enter your email address in the box to the right.  Think about it though.  Don't you already get enough junk mail?

Or, if you prefer you can use a feedreader (like Google Reader). Enjoying the Ride's feed URL is http://www.enjoyingtheride.com/feeds/posts/default?alt=rss .

Wednesday, November 24, 2010

The Deer Hunting Story

IMG_2333c"If Elvis Presley had been a bowhunter, he'd probably be alive today."
~ Ted Nugent, rock star and avid hunter


When battling a chronic disease like MS, you learn to modify your expectations. Meeting even those reconstituted expectations is often as meaningful, or more so, than anything you may have accomplished as a healthy person. Shooting a doe (as opposed to a buck) while sitting in a parked car (as opposed to walking in the woods) is not something that most deer hunters would write home about. But that's exactly what I'm writing about here. When the everyday acts of getting dressed, washing your hair, and eating dinner become endeavors requiring extensive planning and precise execution, then something as complex and meaningful as harvesting a deer is particularly rewarding.

I stared at the same group of trees that I’d stared at for days, waiting for a deer to materialize. It was difficult to stay alert in the waning autumn daylight, when in a period of minutes the vivid forest images would fade first to shades of gray, and then disappear completely.

The last time I shot a deer was in 2003- a very long dry spell. Since then I have been unable to walk in the woods. I used an ATV through 2008. Last year was the first that I was unable to operate the ATV, and was relegated to hunting from my wheelchair and/or wheelchair van. I had seen a few deer since 2003, but they had either moved too quickly, or I had passed them over so that my son could try to harvest one.

If you wonder why a civilized person such as me hunts, please read my earlier post.

My brother, Tom, lives in an area of the state with a high deer density. For the past few years he has set me up at prime locations where I either sit in my van or in my iBot wheelchair. I had been hunting several times so far this year, without seeing a deer. Typically I will sit and watch an area for two hours or so, either early in the morning or late in the afternoon (pretty much only in the afternoon these days). Since deer are primarily nocturnal, the best chance for a sighting is on either side of darkness.

At 2:00 on Thursday afternoon I set out for one of the hunting locations near my brother's house. The goal was for me to be in place by 3:00. In Maine, we can hunt until thirty minutes after sunset. On this day the sun would set at 4:04, so legal shooting would end at 4:34. That’s what happens when you live on the eastern end of a northern time zone. When will the sun set in Maine in December? That’s right, about 5 minutes before 4:00. My friend Chris in Alaska is the only person I know who has it worse.

I decided that I would hunt from the van on this particular day. Sorry iBot fans. I wish that this were an iBot hunting success story, but it isn’t- maybe next year. As a disabled person in Maine I have a special permit that allows me to shoot from a parked vehicle. I positioned the van in such a way that I could easily aim at a spot where the deer were most likely to show up. I can't hold a rifle properly, so I use an assistive device to help me.

DSCN0482I wasn't raised to do this type of hunting. Until I couldn't walk in the woods anymore, I would creep along, very slowly and quietly, often in remote areas. This strategy presented a wholly unique view of the forest after each and every step taken. That kept things interesting. But now I'm demoted to sitting and waiting, two skills I am well practiced at.  It tends to put me to sleep though, if not literally then at least mentally.

I recall scolding myself that day for having allowed my eyes to shut, if only for a second. I thought, "Come on Mitch. Just keep your eyes open for 12 more minutes. These are the best 12 minutes of the day."

There was an opening in the woods to my left. But the area that I was set up for was well to the right of that. I knew that if a deer appeared in the opening to my left then I may or may not be able to get it in my scope. I figured I’d just deal with that eventuality if it occurred.

It occurred.

After days of fruitless tree-staring, I happened to look to my left, and there happened to be a doe looking straight at me, with only 10 minutes left of legal hunting. I thought to myself, “Holy crap! I think that's a deer. Yes, it's a deer. And that's why am here, right? I'm looking for deer. Yes, that's why am here!" 

A shot of adrenalin caused me to suddenly wake up and take decisive action.

I attempted to get the deer into my scope but couldn't manage to swing my gun far enough to the left while using the shooting aid. So I quickly and quietly removed the gun from the aid, leaned the aid against my van door, and tried to twist my body enough to focus my scope on the deer. The deer was about 100 yards away, and looking straight at me. That angle presents the shooter with a relatively small target, as opposed to a deer that is standing broadside. Additionally, I was having difficulty twisting my body enough to get the crosshairs on the center of the animal’s chest. I actually stopped myself from pulling the trigger at one point so that I could push a little harder with my torso to try to get the crosshairs more centered. Perhaps 6 or 7 seconds after first noticing the deer, I pulled the trigger.

BANG! I was completely startled. It had been years since I had shot my high-powered Browning 30-06 rifle, and I had never discharged it from the confines of my van. It was deafening! I was concentrating so hard on the task of lining up the sights and pulling the trigger that I'd forgotten just how loud things would get. The woods are so tranquil at that time of the day. The noise reverberated inside the van and throughout the woods, abruptly marking the boundary between two distinct time periods- the solitary and quiet hunt versus the hectic series of events that followed. 

The deer bounded to the left, out of the opening and into the trees, where I lost sight of it. Had I mortally wounded the deer? I couldn’t know for sure. I gave myself a 50/50 chance.

As had been the custom in my family for generations, in the aftermath of shooting at a deer, I immediately began texting with my cell phone. My brother and his son were at work, only 20 minutes away. I asked them to bring their flashlights and come search for the deer. I knew that they had been looking forward to receiving such a message, as I had looked forward to sending it. The terrain between me and where the deer was standing was not navigable by my iBot. So I just sat in the driver’s seat of my van and waited. I phoned the property owner to inform him that the gunshot he had just heard was mine.

While waiting for people to show up, I phoned my dad to update him on this exciting development. I was exhilarated by what had just transpired, but no more so than my 79 year old father. In years past, he was the consummate deer hunter. His experiences bridge the gap between an age when the harvesting of deer was critical to a family’s well-being (his childhood) to a time when very few people continue to pursue hunting at all. He has likely shot his last deer, and he feared that I had too (so did I). I gave him a quick synopsis of what happened so far, and told him that I would give him an update as soon as I knew the outcome. He indicated that if it turned out that I had missed the deer, he was thrilled that I had even had a genuine hunting experience like this.

Then I called my wife with the wonderful news that I would be late for dinner. I could tell from her voice that she was delighted.

The landowner showed up a few minutes later on his ATV. By now, it was nearly pitch dark. Two of his friends joined him and the three of them carefully approached the spot where the deer had been standing. I could see the beams from their flashlights moving in every conceivable direction, but I could not determine the nature of their discourse. Soon my brother and nephew and another friend showed up. I said to my nephew, "Those guys are looking at something, but I can't tell what. Go up there and find out if they're tracking the deer and give me a call!"

Once my nephew caught up with the others, he called me to tell me that I had definitely hit the deer, and they were tracking it. This was great news. I allowed myself to become optimistic.

I watched from 100 yards away as now six flashlight beams bounced through the woods. Finally, someone, I don't even know who, yelled and said, "we found her Mitch!” I was beyond pleased. I tooted my horn briefly to acknowledge my receipt of the wonderful news.

The deer was a mature doe. I had made a perfect shot through the heart, minimizing any suffering she may have endured. I cannot thank everyone enough for their support. Helping me to harvest a deer is a huge undertaking- the team includes too many friends and family to mention here. I appreciated that this was an extraordinary moment not only for me, but for everyone involved. One pleasing aspect of human nature is that we all like to see the underdog succeed once in a while.

IMG_2341Kim, my brother, his son and I processed the deer into vacuum packed freezer bags on Monday. Well, I watched and they processed. Each time we enjoy the lean, nutritious venison this winter I’ll take satisfaction that in some small way I am providing for my family- an evolutionary itch finally scratched.

As I stated in the opening of this post, true deer hunters are not supposed to get excited about harvesting a doe. Frankly, they're much easier to shoot than a buck. But I don't care. It felt so good to harvest any deer at all. Deer hunting has been such an important part of my life, and I seriously wondered if I would ever be successful again.

In addition to my feelings of gratitude, I am allowing myself the indulgence of a tiny bit of pride as well (I know, this can be a dangerous road). I'm proud that I decided to continue hunting even though I had not met with success since 2003, and even though I could no longer step in the woods. I’ve had to stop participating in so many activities, many of which I considered to be essential aspects of my life experience. But I'm proud that I haven't stopped hunting yet.

This was a very good day. There will be other good days to come, but in the midst of any future difficulties, I’ll always be able to fondly reminisce of that November afternoon when I shot a doe from a parked car.

Thursday, November 18, 2010

I Know This…I Believe That

I know that there should be a playoff system in College Football.
I believe that someday there will be one.

I know that I can become a better person.
I believe that I am on the right track.

I know I can lead a contented life, given my current circumstances.
I believe that this may not always hold true, however, as my disease progresses.

I know that I love my wife more than anything.
I believe that she understands this, even if I don’t say it often enough.

I know that modern democracy is superior to every other form of government so far conceived by mankind.
I believe that there must be a better way to govern, yet undiscovered- a government based on thoughtful, intelligent discourse rather than mind-numbing political rhetoric.

I know that one day we’ll cure MS.
I believe that it will be too late for me.

I know that I have many treasured friends.
I believe that I don’t foster these friendships as well as I should.

I know that the odds of winning the lottery are hopelessly slim.
I believe I still have a chance.

I know that questions of a moral nature are best resolved by choosing the path that maximizes human well-being.
I believe that eventually this concept will win the day.

I know that tomorrow the sun will rise in the east and set in the west.
I believe that each day has the potential to be an amazing one.

I know that, like everybody, one day I’ll die.
But first, I believe that I still have a bit of living left to do.

What do you know? What do you believe?

Saturday, November 13, 2010

Why the iBot is Spending the Night in the Garage

IMG_2326
IMG_2327
IMG_2328

I did a little wheelchair deer hunting today.  I got a stuck in the mud for a while, but the iBot came through for me.  Was Kim as impressed as I was?  Not really.

Friday, November 5, 2010

I've Been Faking the Whole Wheelchair Thing

M51_Van_Seat_400For over two years I’ve been perpetrating a fraud by posing as a full-time wheelchair user. It’s a big, fat lie, and I need to come clean. Since July of 2008 I've been an iBot user, but only in the past couple of weeks have I actually become a wheelchair user, and then only part-time.

If you read my posts (here first, then here) about how I was almost scammed as I shopped for a power wheelchair recently, you know that I've been looking for a backup for my iBot. About two weeks ago my new Invacare Pronto M51 was delivered, and I've been using it frequently around the house in order to save wear and tear and battery life on my iBot. As you may know, the iBot won’t be around forever (click here for an explanation). Just yesterday, for the first time, I decided to venture outside of my house in the M51- a real wheelchair. Yikes.

I expect that when most people "come out" in public for the first time in a wheelchair, it is a traumatic experience. And I expect that the primary reason for said trauma is that many people regard wheelchair users with either apathy or pity. They literally and figuratively look down on us, no doubt comforting themselves with thoughts like, "I'm glad that's not me."

But I didn't go through that ordeal in July of 2008. I didn't go out in public in a wheelchair. I went in an iBot, and that's quite a different thing.

IMG_1935Whenever I operate my iBot in public, I try to do so in balance mode (depicted at left), for several reasons. First, it's practical. Communicating with people eye to eye makes sense. But mostly I operate in balance mode for non-practical reasons. When I’m zipping around on two wheels people don’t look at me with pity. In fact, in an implausible twist of fate, they sometimes look at me with envy. I realize they don’t want to be disabled, but they appreciate that they’re in the presence of a cutting edge device, and I’m the pilot. As my friend Max Burt pointed out to me, when you are in balance mode in an iBot it gives you personality. You are doing more than just getting around. You're getting around in style. This is not a frivolous consideration. Projecting a little personality is good for the soul.

But back to my other wheelchair…yesterday my son was scheduled for day surgery at a local hospital. My wife was working, so I volunteered to accompany Zach. The batteries on my iBot were running a little low, so I decided to venture out into the cold, cruel world in a mere wheelchair, rather than in my iBot. I was finally going to stop faking it. I was going to be a real wheelchair user for once.

So how did it go? I had mixed results. Since I was usually sitting in a waiting room or sitting by my son’s bed, there really wasn't a lot of opportunity to be in balance mode anyway. There were no surprise stairs to climb or curbs to navigate- no beaches either. I was just another cripple zipping around an accessible hospital in a wheelchair, not projecting my usual personality, and not attracting comments every five minutes.

IMG_0546The only functional shortcoming of my wheelchair was evident in the cafeteria. I was sitting too low to get a good look at the food being offering at the buffet, and so I ended up with a rather horrible cashew chicken dish. In order to wash away the taste, I decided to go back and get some dessert. I couldn't reach the handle on the soft serve ice cream dispenser, so I had to ask a gentleman to help me out. I didn’t particularly like asking for help, but, well, the ice cream washed away both bad tastes.

My first public wheelchair experience wasn't too bad, but I think I'll stick with my iBot in the future. I’m just not the same without it.

Monday, November 1, 2010

Political Advertising- Make it Stop!

Election count
(Photo credit: Coventry City Council)
I know this blog is supposed to be about leading a contented life as a disabled person. But there is something else I'd like to write about today, if you will indulge me.

Here in the United States we have a big election tomorrow. It's what we call a midterm election, so we're not voting for President, but we are voting for just about every other possible position in federal, state, and local government.

I'm not here to advocate for any particular candidate or political party, but rather to publicly protest about how absurd the process has become. I understand that it's better than the alternative – not being able to choose your own representative government. But we've been doing this for over 200 years now, and it is getting worse, not better. 

Specifically, I'm here to complain about political advertising on TV. As a disabled person who sits at home all day, I tend to watch a lot of television. I try to pick out the quality programming, but I must admit that sometimes the TV is on in the background for no reason in particular (like right now, for example).

In the last couple of months, my television viewing experience, and more importantly my enthusiasm for tomorrow’s election, has been raped and pillaged by incessant political advertising. It would be one thing if the commercials were informative, well done, or even creative. But they are not. They are absolutely mind-numbing.

In response to this deluge I conducted a scientific study of the candidates’ advertising. My extensive data analysis indicates that if a negative claim is made against an opponent, there is a 99% chance that said claim is at best distorted and at worst completely fabricated. The data further reveals that if a positive claim is made about a candidate, there is an 80% chance that said claim is at best distorted and at worst completely fabricated.

I have scientifically established, therefore, that negative advertising is less informative than positive advertising, and that positive advertising is far less informative than no advertising at all. Because of this, as I finalize my voting decisions today, I will award “bonus points” to the candidates who inundated me with the fewest commercials (but I’ll give more bonus points for lack of negative commercials, as they are the worst kind).

OK, maybe I didn't really conduct a study, but I bet my percentages are pretty damn close to the truth.

I can think of only one good reason why candidates spend so much money on television advertising. It must work. I would be ashamed of myself if I let the content of these commercials influence my vote in any way (other than my bonus point system). We should listen to debates, meet with the candidates, hash things out with our friends and neighbors, but we can’t let these fraudulent commercials sway us! Since many of us apparently are duped by this disinformation, then I must reluctantly conclude that we are a weak-minded society, prone to manipulation. Shame on us.

But it doesn’t have to be this way.
 
I'll make my informed voting decisions based on how I feel about the candidates’ ability to represent my family’s interests, with adjustments made for how I was treated as a consumer of their advertising.  The only way we can stop the insanity is to demonstrate to the next round of political candidates that mudslinging and tacky advertisements will not produce the desired outcome.  All television commercials of the current style, even the positive ones, are a waste of our time and an insult to our intelligence.  Make it stop!

Can I get an amen?
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Sunday, October 31, 2010

Two Excellent CCSVI Interviews

LIJV stenosis 01Click here for Dr. David Hubbard, Neurologist, San Diego, CA

Click here for Dr. Torre Andrews, Interventional Radiologist, Seattle, WA

Tuesday, October 26, 2010

I Was Interviewed by HealthCentral.com

The interviewer, Lisa Emrich, maintains the blogs Carnival of MS Bloggers and Brass and Ivory.  To read the interview click here.

Monday, October 25, 2010

Fall in Maine

Here is a photo montage I threw together.  Enjoy. 

Fall in Maine 2010

Saturday, October 16, 2010

Some Things I Miss (and a Few Things I Don’t)

Little Boy Pee
(Photo credit: nepolon)
Some Things I Miss

1. Standing up to pee
You ladies may not appreciate this, but the ability to stand up and pee five to ten times a day (depending on beer consumption rate), without dropping your pants and with at least a fair chance of hitting your target, is perhaps the greatest single advantage of being a man. If you can’t stand up, then you can’t stand up and pee. I miss that (ironically, I no longer miss though).
2. Going under the radar
It may be difficult to believe that somebody who chooses to balance on two wheels at the supermarket gives a damn about blending in. It's not that I always want to blend in, or even that I often want to blend in. It's just that I’d like to be able to go under the radar once in a while. When you're in a wheelchair, be it a traditional wheelchair or especially an iBot, you always stick out like a sore thumb. Celebrities also suffer from this dilemma. But they can work around it with a hat and a pair of sunglasses. I tried it. Doesn’t work.
3. Typing
untitled Dragon NaturallySpeaking is a wonderful program. It allows me to put words to a page and navigate around my computer hands-free. However, I really miss typing, for a few reasons. First, our house has an open layout. Therefore, when I'm dictating to my computer everybody within earshot knows what I'm saying. I like my privacy during the writing process. Also, I don't know how many times I’ve started talking to the computer and my wife or kids have responded, "What?" Second, I had a pretty decent respiratory cold last week and didn't feel like speaking to anyone, let alone my computer. Third, Dragon is only about 95% accurate. Sounds pretty good, right? Keep in mind that a typical blog post is about 1000 words. That means I have to find and repair about 50 errors in each post.
Although Dragon NaturallySpeaking is a wonderful thing, it’s just not the same as typing.
4. Breaking a sweat
I can't remember the last time I broke a sweat. It's impossible for me to move my muscles enough to cause my core temperature to rise enough to require my body to cool itself through sweating. Also, it's uncomfortable for me to be in an environment where the ambient temperature is high enough to cause my body to sweat (without exercise). It’s not that I actually miss sweating. It’s that I miss getting exercise and spending time in the heat.
5. Having a career
I was not a workaholic, and I'd be lying if I said I loved going to work each day, but having a career was at times fulfilling. I always played an important role in the companies I worked for, and people seemed to want me on their teams. I miss the feeling of usefulness that came with my career. And the money. I miss the money too.
6. Being away from Kim
LONDON - JUNE 10:  (UK TABLOID  Actress Heathe...Don't misunderstand. If you've been reading this blog you know that I love my wife dearly, and that even before my disability we spent most of our free time together. However, there were certain activities that I enjoyed which required that I be away from my wife. Some of these activities, such as going away with the guys for a hunting or sports weekend, are not practical for me anymore. I need Kim’s help just to get through the day now. Similarly, Kim used to get away for professional conferences and the occasional ladies weekend. She can still do that if we make certain arrangements, but it's definitely not as easy as it used to be.
7. Playing sports and games
When I was diagnosed at age 38, I wasn’t playing in any men’s sport’s leagues. But I was active. I could shoot a little hoops, play catch, ping pong, bean bags, billiards, Wii, foosball, etc. I was competitive, and won my share of contests. Online cribbage and Pigskin Pickem’ just don’t satisfy my need for play and competition.
A Few Things I Don’t Miss

1. Golf
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. (Don’t send me links to handicapped golfing websites.)
2. Dancing
I always hated dancing. Now I can’t. Ha ha. (Don’t send me ideas for ways that I can dance in my iBot.)
3. Swimming
I could swim enough to keep from drowning, but it’s an activity I never enjoyed. We had swimming pools in two of our houses, and they were wonderful for the kids. I may have jumped in 5 or 6 times per year. I never found that the discomfort of having water get in my eyes and up my nose, or the initial temperature shock, were enough to warrant the meager benefits. I don’t miss swimming. (Don’t send me links to handicapped swimming sites.)
4. The bullshit part of my career
Pointy-Haired BossAs I mentioned above, having a career was a partially rewarding experience, which I partially miss. However, I cannot count the times that I had to deal with absolute bullshit at work. The problem was not tyrannical bosses. Most of them were excellent mentors and all-around good eggs. But that didn't stop them from asking me to do stupid things, for stupid reasons. More often than not this was the result of upper management feeling the pressure to meet month-end, quarter-end, year-end, or even minute-end goals. Satisfying this urge usually required the temporary (and legal) suspension of good business practices. Instead, we adopted poor business practices that would arbitrarily divert revenue away from the next business period, and place it in the current business period, even if this maneuver did not make customers happier or improve the long term health of the company. By playing this game, we set ourselves up to begin each business period already in the hole. Guess how we’d get out of it. That’s right. Near the end of the business period we’d again suspend good business practices so as to steal from the next period. Once you start playing this game it becomes self-perpetuating, an endless loop of jumping through hoops. Fulfilling? Not to me.
Other times I had to deal with bullshit from unreasonable customers, unreliable suppliers, or unnecessary labor unions. Throughout my career, the bullshit factor was often high enough to leave me with a bad taste in my mouth. As a result, my jobs were just jobs, not passions. If I had it to do over again, my primary criteria for deciding upon a career path would be to minimize the bullshit, knowing that I could never completely eliminate it. (Don’t send me links on how to overcome my disability and reintegrate into the workforce.)
Things I Expect to Miss a Year from Now

1. Driving

2. Cutting my own steak at dinner (note from future Mitch: true as of 11/15/10)

3. Getting in and out of bed unassisted
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Sunday, October 10, 2010

Evil is Lurking Out There- the Rest of the Story

IMG_2213Post Script: This cyber criminal is now using the name Kimberly Locke.  

In my previous post I told the story of how a cybercriminal posed as a handicapped person in an attempt to either steal money from me or commit identity theft, or both, while I was trying to sell the used wheelchair depicted on the right. Now I have the rest of the story.

The last email I told you about was this one:
Image representing PayPal as depicted in Crunc...Dear Mitchell Sturgeon,
My name is Richard Wilson. I'm a PayPal representative in charge of your transaction with Tracy Grubbs.
Kindly reply to this message if you have any question regarding this transaction and I will be happy to help you.
We thank you for being an asset to PayPal and we hope to serve you better in the nearest future.
Sincerely,
Scott Thompson
President
PayPal Inc.
Soon after I received this email:
Image representing PayPal as depicted in Crunc...Image via CrunchBase
Dear Mitchell Sturgeon,
You have an Instant Payment of $2,230.00 USD from Tracy Grubbs (quitmincy001@gmail.com).
Payment Details
Purchased From:Mitchell Sturgeon
Transaction ID:8S380593UR606674N
Item #Item TitleQuantityPriceSubtotal
Not Available
Power Wheelchair- Invacare
1$1,730.00USD  $1,730.00USD

Shipping & Handling via World Wide Speed Post to 03276
(includes any seller handling fees)$500.00USD
Shipping Insurance (not offered):--
Sales Tax :$00.00 USD

Total:$2,230.00USD
Additional note:
I have made the payment, so I have forwarded your details to the Shipping Company who will pick up the item, please send the pick up cost to them as we discussed and arrange with them  the pick up date and time. Thanks.
Shipping Information

Address:Tracy Grubbs
20 Dearborn Rd. Apt. 1.
Northfield,
NH
03276.
USA

Shipping Method:The item will be picked up from the seller's Location by World Wide Speed Post Agent.
Address Status:Confirmed
If you have any question regarding the pick up, please contact the Delivery Company speeddelivery@deliveryman.com or your buyer.
Thank you for using PayPal!
The PayPal Team.
PayPal Email ID PP1268.
And then this one:

email_newUser_hdrtxt_600w161h
PayPal Safety Measures Against Online Fraud!
Dear Mitchell Sturgeon,
We have received an order from one of our customer to make an instant payment of $2,230.00USD to your PayPal account. The payment has been made successfully and the money has been credited to your PayPal account but you will not have access to it. However, since this money is meant for a purchase or a service that involve a Shipping Company.We have to receive a confirmation that you have sent the pick up cost to World Wide Speed Post before the money will be available for spending. This is due to the large increase in the rate of the online scams recorded last year (2009). We have changed some of our rules and regulation to make sure our clients, are safe from scam, PayPal in conjunction with The FBI and The IFCC has invented certain preventive measure to ensure the safety of our customers.

Such measure are:
1. Once a payment is made,A confirmation Email will be sent to the seller that the payment has been made to state the transaction details which has been sent to you. Also a confirmation is sent to the buyer that the money has been deducted from his or her account. So once you get this mail,You should take necessary action and get back to us with the confirmation that you have sent the pick up cost to the shipping company. Once we have confirmed the information provided with the shipping company, the money will be available instantly.
2. Once a payment is made and it has been approved by PayPal, such transaction is Sealed (because both seller and buyer must have come to a conclusion before payment is made by the buyer) so therefore neither the buyer or seller can cancel this transaction or ask for the returned to the buyer's account. Also, this is where we generate our income, because the more transaction made through PayPal, the more we generate our Income.
3. Failure to abide by these laid down safety measures by PayPal may leads to suspension from PayPal and further more invitation to an interrogation with the F.B.I
So can you see we are very considerate about the safety of both buyer and seller.
Note: that the pick up cost has been included in the payment.
Thank you for using PayPal
Isn’t it ironic that the cybercriminals were using fear of fraud as a tool to attempt to commit fraud.  So if you see these types of sham PayPal emails, know that they are fraud.

I also, supposedly, received direct emails from Tracy, like this one:
Hi,
I wondered why I have not heard from you regarding the pick up cost. I will like you to update me if you have sent the pick up cost to the shipping company and schedule pick up date and time? and if you have not I need to understand what is still delaying you. Get back to me ASAP. Thanks.
I was tempted to respond with either a scathing email, trying to shame them, or some email that would string them along just for fun.  However, I decided instead to just ignore their emails…they'll figure it out soon enough.

The good news is that today I sold the wheelchair to a live human being who was clearly disabled and will make great use of the chair.  She paid in cash.  End of story.

Be careful out there.
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Friday, October 8, 2010

Evil is Lurking Out There

Most Evil
Image via Wikipedia
Post Script: This cyber criminal is now using the name Kimberly Locke. 

I’m predisposed to consider Life to be a wonderful thing. I can’t defend this perspective with a rational argument. It’s just how I’m wired, and I’m grateful for it. I suppose the alternative type of wiring would be depressing. It's so easy to worry all day, every day, about overpopulation, pollution, global warming, and the general decline of civility. If ignorance is bliss, then my inclination to see the good in the world must be evidence of my naïveté. I'm okay with that.

But there are definitely pockets of Evil all around us. I tend not to spend too much of each day thinking about terrorists and maniacal dictators and child molesters, but I know they are out there. And in the past few days I came to face to face, in a cyberspace/virtual manner, with true Evil.

I recently determined that I needed a backup power wheelchair- to supplement my iBot. Long story short- I bought a used one, but soon realized that it was actually too small for me. So I put it up for sale at craigslist.org (and a couple of other places).

A few of days ago I received an email inquiry about the wheelchair:
Hi,
I'm interested in buying this item, and I'd like to know if its still available for sale?can you give me more details about it?like how long you have been using it? Did you bought it new?(are you the first owner, did you get it from someone trustworthy) Is it still in good working condition? Not trying to be rude here, but there are tons of crappy items out there and don't want to be stuck with something in bad condition. Can you provide me more pictures of it? Finally what's your last price? Get back ASAP.
Thankx.
Tracy
Three things stood out to me about this e-mail. First, my advertisement included four photos of the wheelchair from various angles. How many more photos did this person need? Second, I felt like saying "You don't get to ask me what my best price is. Make me an offer and see how I respond. That's how a negotiation works." But I didn’t. Third, the typing/spelling and grammar was terrible, but not completely unusual for this type of communication. Here was my response:
Tracy,
Yes, I still have the chair.
I bought it a couple of weeks ago, not knowing that the seat was too small for me. It's like I went to the store and bought a pair of pants without trying them on :-)
The guy I bought it from said that his mother had passed away recently, and had used the chair for only 5 - 10 hours. It looks to be in great shape, and operates well, so I have no reason to doubt him.
I live in Scarborough. Where are you located?
I asked $1625 with the intention for taking an offer of $1500. Let me know if you'd like to see it. Attached is one more picture.
Mitch
So far, so good. The next day I received this response from “Tracy”:
Hi,
Thank you very much for the details. So Sad im buying this for myself(im an handicapped and I need this to make my life more better again), for this reason, I will not be able to come and see it, but I will take your word that its in good condition. Just to let you know that you will not be responsible for shipping and handling. I have made an arrangement with a shipping company who will come to your location for pick up. Kindly provide me your full address, so i can forward it to the shipping company to calculate the cost of pick up for me. Please get back to me as soon as possible.
Notice that she didn’t answer my question about where she lived. I was starting to smell a rat, so I asked Kim, via email, if my concerns were justified:

Kim,
What could be wrong with this? What are the risks of me giving my address?

And Kim replied:
Gretchen just searched your name in Scarborough online, and got our home address and home phone number. No risk in you giving it out now :-)
When we put Tracy Grubbs into the search, the closest one out of the 16 listed was in South Carolina.
I would make sure we have all $$ up front prior to letting the wheelchair go.... maybe she could use PayPal instead of a check???
This made sense to me. Proceed with caution, but continue to proceed…I emailed her my home address. Then I received this email from “Tracy:”
THank you so much. I have forwarded the address to the shipping company so they can calculate the pick up and delivery cost for me to make the payment. I'm sure they will contact you soon. I would like you to know that the payment will be made via PayPal, All you have to send me is your paypal email address so I can make the payment immediately. Also I will be including the pick up cost with the total payment so you will help me send it to the shipping company via Western union money transfer as soon as you receive the payment from paypal. I would have done it myself but I'm an handicapable, i cant walk and thats why i need this to make my life more easier again, I will appreciate your help here.
Please note that I will include additional $80 for the western union charges to send the pick up money to the shipping company.
Now things were definitely getting weird, and I began to assume this was probably fraud, but decided to proceed with care, so as not to miss out on a potential, although unlikely, sale. I was confident that I could not be scammed. That was a mistake. I replied:
Tracy,
I'm glad you are moving forward with the purchase. My PayPal email address is the one we're using right now.
I'm not clear on this shipping situation. Why can't I just hand a check to the company when they come to pick up the unit? Or why can't I pay via credit card or PayPal? I've never used Western Union.
Mitch
Her response, which did not answer my shipping questions, was:
Hi Mitchell,
I have made the payment now as promised. You will be receiving the payment confirmation message from paypal regarding the payment. The shipping company wants $500 for pick up and delivery. So I made a total payment of $2,230. $1650 for the Chair, $500 for the shipping company, and $80 for whatever Western Union will be charging you to send the money to them. Please let me knw as soon as you send them the money ASAP. thank you.
Hmmm. I read this email on my cell phone, and needed to wait until I got home to see if the money was really in my PayPal account. I was doubtful. Then, almost immediately after Tracy’s email, I received an official looking email, complete with PayPal logo, which read:
Image representing PayPal as depicted in Crunc...Dear Mitchell Sturgeon,
My name is Richard Wilson. I'm a PayPal representative in charge of your transaction with Tracy Grubbs.
Kindly reply to this message if you have any question regarding this transaction and I will be happy to help you.
We thank you for being an asset to PayPal and we hope to serve you better in the nearest future.
Sincerely,
Scott Thompson
President
PayPal Inc.

Now this is where the cybercriminals really got sloppy. He told me in his opening sentence that his name was “Richard Wilson,” but signed the e-mail “Scott Thompson.” And I really didn't think the president of PayPal would be concerned about my little transaction. I became quite certain that when I got home, there would be no $2,230 deposit in my PayPal account, and indeed there was not.

I found a PayPal email address to report fraud, sent off copies of these emails, and received this response from the real PayPal:
Hello Mitchell Sturgeon,
Thanks for forwarding that suspicious-looking email. You're right – it was a phishing attempt, and we're working on stopping the fraud. By reporting the problem, you've made a difference!
Identity thieves try to trick you into revealing your password or other personal information through phishing emails and fake websites.
To learn more about online safety, click "Security Center" on any PayPal webpage.
Every email counts. When you forward suspicious-looking emails to spoof@paypal.com, you help keep yourself and others safe from identity theft.
Your account security is very important to us, so we appreciate your extra effort.
Thanks,
PayPal
It's been about 48 hours since I last heard from the cybercriminals. I expect that since I did not respond to the official-looking PayPal e-mail, complaining about my lack of payment, they are done with me. They didn't get any money from me, but in retrospect, I’m not sure that was their only objective. They got my mailing address, which as Kim stated is public knowledge. They got my PayPal e-mail address, which shouldn't allow them to do anything. Nevertheless, if their job is to build an identity-theft portfolio for me, they just put together a couple pieces of the puzzle. I thought that I only needed to be careful enough to not lose money or my wheelchair on this transaction, but that may not have been the game. It may have been an identity theft game instead.

It's easy to see in hindsight that I should not have provided any of this information, but it was less obvious to see in real time. These identity thieves tend to work on the more expensive products advertised at places like craigslist, because they know they can string us along longer due to the potential of a significant sale.

Let’s review the red flags. No single red flag necessarily should have indicated to me that this was a fraud, but the combination certainly should have:
  1. Poor spelling and grammar- points to potential offshore criminals.
  2. No indication of the buyer’s location or address.
  3. Buyer asking to proceed ASAP.
  4. Buyer indicating that she will take care of shipping and asking for my shipping address.
  5. Buyer telling me that they will use PayPal, instead of asking me if that is the preferred method of payment.
  6. Buyer mentioning the use of Western Union.
  7. Shipping cost being a nice round number of $500.
  8. Buyer avoiding answering any of my questions.
  9. Poorly written letter from PayPal, with name change from opening to closing, and trying to get me to think that the president of PayPal was writing to me directly.
I proceeded as far as I did with these people due to my supreme confidence that I could not be scammed. But they are pros. We may have been playing different games. I was confident the wheelchair would not leave my possession without cash in my hand. In retrospect, I should've stopped this as soon as I smelled any kind of foul odor.

As a result of my folly, I decided to sign up for an identity protection service at about $15 per month. I certainly didn't need this expense, but it may be money well spent. I also changed my PayPal email and login information. I won’t be changing my home mailing address though :-).

It’s one thing to pull a scam, but to pretend to be a handicapped person, and try to steal from a wheelchair user? That is beyond reproach. How do these people sleep at night? They must be a different sort of person than you or I.

I'm so disgusted by this experience that I'm almost… angry, but not quite. My internal wiring overrides that urge. It was a learning experience for me, and I simply want to share it with you.

I’m not going to let this episode change my outlook on life. That would be a victory of sorts for the criminals. I still think the world is a wonderful place, even if that means I’m ignorant or naive.

Oh, does anyone want a nice wheelchair for $1,500? Heck, I’ll take $1,200 now. It reclines!

IMG_2212
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Thursday, September 30, 2010

I am More than My Genes

Animation of the structure of a section of DNA...
(Photo credit: Wikipedia)
I spend a lot of time thinking.

I think about things like what came before the Big Bang? If the universe is finite, then what is beyond its borders? How should I best take advantage of the gift of life? What is the allure of reality TV? What makes me me?

Consider that last question for a moment. What makes me me?

First, let's go back to the beginning.  I am the product of my parents’ chromosomes combining to create my unique DNA. Although we tend to inherit the traits of our ancestors, the process by which an individual’s genetic code is formed has a degree of randomness to it. What if things had gone just a bit differently on that fateful day when I was conceived? Would I still be me? What if Dad had decided to have one more sip of his drink?  What if Mom had to sneeze?  What if a butterfly flapped its wings in China?  If anything had changed that day, then the random process of my DNA creation would have been ever so slightly altered.

If I had blue eyes instead of brown, intuitively I would say that I am still me. Eye color is incidental to who I am, not essential. If I was 5’ 7” tall instead of 5’ 11”, I would still be me. But what if my IQ was 20 points higher or lower, my hair color was blond instead of brown, I didn’t have a genetic predisposition to MS, my build was slight instead of husky, and I tended to be rash and emotional instead of logical and calm? When, in this continuum of differences, would I cease to be me and become someone else instead?

Of course this is just a thought exercise, because I am who I am, genetically. My DNA does not change. It was established at conception. But I love to ponder questions like this, nevertheless. I can’t help myself.

Now let's look forward from birth, to try to answer the question “what makes me me?” My DNA is a blueprint for who I am, but because my body and my brain are also influenced by experiences and environment, my DNA does not determine exactly what I will look like or how I will behave throughout my life. For example, a person's DNA would not account for a missing finger from a lawnmower accident. A person's DNA would not completely account for psychological damage from abuse. So if we are more than our genes, then what are we, and what do we call it?

Sebastian Seung is an MIT researcher who is pursuing this philosophical question from a neuroscientist’s perspective. If these sorts of abstract mysteries intrigue you, you might enjoy the video, below. If you are too busy feeding the baby, looking for a job, or trying to figure out if your spouse is cheating on you, I understand and accept that you simply may not give a damn.

Note that this talk is designed for a general audience, not an audience of other neuroscientists.


If you did watch the above video, consider this with me. Since I have a brain disease, how has it reshaped my connectome? And if “I am my connectome,” as Seung hypothesizes, then who would I have been without MS? I’ll never know.
.
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Monday, September 27, 2010

CCSVI Alliance Update

CCSVI%20Alliance%20Logo%20NoTag%20LineYou may recall that I volunteer a bit for a charitable organization called CCSVI Alliance.  What have they been up to?  They have been busy!

Seven months ago a small group of passionate individuals formed CCSVI Alliance with a clear mission: to educate patients with research-based information, to provide tools for patients to advocate for themselves, and to support the medical professional’s exploration of chronic cerebrospinal venous insufficiency (CCSVI).  CCSVI Alliance has accomplished much in its first months as a professional organization -- please see the summary below and share it!

Over the coming months they will continue to work hard as they complete their strategic plan, raise funds to enhance CCSVI Alliance and fund CCSVI research, and expand on existing efforts to educate patients and support medical professionals.

Your interest and support has been key to all that has been accomplished and I hope you will join in financially supporting CCSVI Alliance, inviting your friends and family to also contribute and continue to spread the word about their important work.  Donations may be made on-line at the "Helping the Cause" page of http://www.ccsvi.org/ or by sending a check to:

CCSVI Alliance, Inc.
22 Tommys Path
Northford, CT 06472

Here is the quick update on what has been accomplished in their first seven months together!

Educating Patients & Supporting Medical Professional Exploration

*      Launched website http://www.ccsvi.org/ on July 2011
  • Original analysis of published materials for those new to CCSVI and those well versed (medical content reviewed by professionals)
  • Exclusive interviews with professionals and patient profiles
  • Comprehensiveness, design, and quality praised by patients and professionals worldwide
*      Brought together medical professionals
  • Made connections across disciplines to advance research in CCSVI on behalf of Hubbard Foundation, International Society of Neurovascular Disease (ISNVD), and Society of Interventional Radiology (SIR)
*      Served as key resource for CCSVI community
  • Met with professionals at the Annual MS Consortium meeting – June 2010
  • Participant/speaker at the Symposium on Testing and Treating CCSVI, Brooklyn, NY – July 2010
  • Guest member of Endovascular.org – participating in an interactive online forum focused on CCSVI where medical professionals learn from each other
  • Asked to participate at the International Society of Endovascular Therapy (ISET) in 2011
*  Sharon Richardson, President, will be a participant in the town hall meeting along with Dr. Michael Dake, Dr. Salvatore Sclafani, and Dr. Paolo Zamboni.

Building a Professional Organization

*      CCSVI Alliance, Inc. – organized  February 2010; non-profit status received May 2010
  • Legal documentation by Skadden, Arps, Slate, Meagher & Flom LLP (services donated)
  • Branding and Identity by Onoma LLC, Identity & Media Design (services donated)
  • Public Relations by Crenshaw Associates (services donated)
  • Formation of Patient Advisory Board (PAB)
  • Executive Director (TBA) – identified outstanding candidate based on consultations with other disease non-profit executive directors and Board members
In addition, the logo of CCSVI Alliance was recently recognized by an international expert in the use of identity as a tool in marketing and managing!  (For details visit www.identityworks.com/probono/CCSVI.htm.)  We are working hard to create a professional and respected organization that can promote CCSVI.

Thank you for all you’ve done to assist CCSVI Alliance!  We look forward to your continued support, input, and assistance in helping us reach our goals.

To read about my personal CCSVI diagnosis and treatment experience, click here.

Wednesday, September 22, 2010

I’ve Become an Expert Funambulist

English: Young performers at Circus Juventas d...
(Photo credit: Wikipedia)
From Dictionary.com:
fu·nam·bu·list [fyoo-nam-byuh-list]
–noun
a tightrope walker.
Those of us with chronic diseases hear conflicting advice on how we should best cope. On the one hand, we need to move beyond denial, accept reality, and make the best of our situation. On the other hand, we’re advised to never give up, stay positive, and hope for a cure. So which is it?

In my humble opinion, and I have some experience now in this regard, people with chronic diseases need to do both. They need to prepare for the worst by accepting their condition and making the most of whatever time and/or abilities they have left. But wait! Simultaneously, they need to hope for the best by remaining open to new treatments and staying abreast of current research. Walking the fine line between accepting reality and hoping for a miracle is a precarious balancing act.

A well-intentioned friend said to me a few months ago, "If you don't have hope then you have nothing, right?" I had to disagree. Although I still have hope, I don't think I rely on it. If I had no hope that my condition would some day stabilize or even improve, I wouldn't necessarily be left with nothing. I would be left with acceptance, and that's something.

Here’s another high wire act I’m navigating. I've chosen to write this blog in order to raise awareness of the issues facing people with disabilities. So I need to be sincere, forthright, and sometimes even blunt. Beating around the bush or painting a falsely positive picture won’t convey a clear message to the readers. Yet, there is a line that I don't want to cross.

On the one hand, I am compelled to lay bare the unadulterated truth about disabled life, or at least my disabled life. On the other hand, one of the least admirable of human traits is self-pity. I hope I've provided enough commentary here about my intent to live a positive, useful, and even happy life (to the extent possible), that my circumstances do not come across as miserable. Even my parenthetical statement in the previous sentence raises the self-pity red flag, but I'll ignore it. This is indeed a fine line.

Here's a third high wire act of mine. Throughout the day there are several activities that are more difficult for me to perform than they used to be. These activities are congregated around the morning and evening time. Getting up, taking care of my grooming issues, dressing, and generally preparing for the day are no small tasks. Then, in the evening I have to undo what I did in the morning. There are certain steps that I still complete with ease. Other steps I can no longer complete. But the steps I'll address here are the ones that I can sort of still complete.

Take for example, removing my trousers. I can unbutton them okay, and I can stand for the 2 seconds it takes to get them down from my waist to below my knees. Then the fun starts. Since I can't move my legs, how do I get the trousers that are bunched around my ankles all the way off? I’ve devised intricate steps where I inch the trousers off little by little until I reach the point where I can just pull on both pant legs and complete the task.

Some days this goes well, and some days this goes poorly. Maybe Kim is standing nearby, and maybe she is elsewhere. On the one hand, I want to remain self-sufficient. On the other hand, I can become frustrated, and it is so easy to ask her for help. I walk the fine line with my trouser removing, and with 100 other tasks, between trying to maintain my independence and knowing when it makes sense to ask for help. The kicker, with a progressive disease, is that the line keeps moving. Oftentimes, a task that I am able to complete today, I’ll struggle with tomorrow and forever after. Imagine a tight rope walker uncertain of exactly where his next step should be.

Those are just a few examples of how I’ve become such a proficient funambulist, but not the kind that anyone would pay money to see. My high wire acts do not entertain spectators, yet they are no less perilous than the ones carried out by circus performers. Maybe I’ve got it all wrong. Perhaps I could sell tickets for people to watch me conduct a Google search to determine if Bee Sting Therapy is a cure or a scam, look over my shoulder as I proofread my blog drafts, or sit on the edge of my mattress and watch me struggle to put on my flannel pajamas?

Or maybe a reality TV show...cameras stationed all over my house.  I'm calling the networks.
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Wednesday, September 15, 2010

CCSVI Diagnosis and Treatment Log Entry #11 – Six Month Report

IMG_0323 “The truth does not change according to our ability to stomach it.” - Flannery O'Connor

Here’s a bit of truth: CCSVI treatment didn't work for me.

I saw no improvement in my condition from the treatment I received on March 17, 2010. But that didn't surprise me. I wasn't looking for improvements in my symptoms. I was only hoping that I would stop getting worse. Now that six months have passed, I can state without reservation that my MS has continued to progress at the same slow, steady rate that is has since my diagnosis nine years ago.

This is difficult for me to report, for several reasons. First, I know that my friends and loved ones hoped that this treatment would benefit me in some way. Second, I know that the larger MS community holds its breath for good news from those of us who were among the first treated, because every success story brings hope. Third, I really thought this might work, and I am deeply disappointed that it didn’t.

So how do I feel about CCSVI, given its failure to address my disease progression? I am only one data point- a damned important one to me- but still only one data point. Dr. Gary Siskin, who has treated over 100 patients, recently commented that approximately 1/3 of his patients see a significant improvement, 1/3 of his patients see a modest improvement, and 1/3 of his patients see no improvement at all. I obviously fall into that last group.

IMG_0320 Our understanding of CCSVI is only in its infancy: how it’s related to MS, how to treat CCSVI, and how people with various types of MS react to the treatment. The complex network of veins that drain the central nervous system has never been studied from this perspective. It will take many years and many clinical trials before we develop a thorough understanding.

I remain confident that when all is said and done, CCSVI will be considered the most important discovery, ever, for the treatment of MS. And if a relatively simple procedure helps so many people, instead of pumping toxic, exorbitantly expensive drugs into our bodies day after day, year after year, so much the better.

What then, is next for me? Because there is nothing else that is at all promising for people with PPMS, and because both my mind and my gut tell me that this is a game changing idea, I still believe that CCSVI treatment is my best chance. Perhaps the impact from my treatment in March will be felt later. Perhaps, although he is an excellent physician, my doctor overlooked something during my venogram. Perhaps, as we learn more about CCSVI, new techniques will be discovered that can help people like me. I expect that I’ll undergo another venography procedure sometime in the not-too-distant future, just to make sure that we haven’t missed something.

If I turn out to be wrong, and CCSVI is a bust, I won’t lament the time I spent pursuing it for myself, or advocating it for others. It’s not like I have any better medical options to chase. The opportunity cost of my pursuit of CCSVI is nil.

IMG_0302 I plan to remain heavily involved in the CCSVI world. I must admit though, all of the positive stories that I read about online and watch on YouTube do wear on me. I know that I should feel nothing but joy for every person who benefits from CCSVI treatment, and I do. But sometimes, overlaid with this joy, is a tiny bit of resentment because I didn't benefit myself. I’m not proud of this, but I’d rather acknowledge these feelings and deal with them than deny their existence. 

Interwoven with that tiny bit of resentment, is the notion that a minority of the MS community would prefer that I remain silent about my poor outcome. They only want to hear the good news, and they fear that admissions like mine only serve to embolden the CCSVI detractors. Most MS patients, however, want people like me to relate my treatment experiences no matter the outcome, and that’s what I’ve decided to do. For a more detailed discussion of the battle between supporters and detractors of CCSVI treatment, click here.

Here’s my message to the wider MS community, and my friends who are working so hard on CCSVI issues: I am sticking with you. I am advocating for you. I am celebrating your successes. In return, please continue to listen to and acknowledge the disappointment that approximately one third of us feel when CCSVI isn't the answer.

Here’s my message to my friends and loved ones: my medical challenges are daunting, but my emotional health remains strong. I welcome and appreciate your support, whatever form it may take.

And here’s my message to myself: Keep telling the truth, and keep searching for the truth, even if it is sometimes difficult to stomach.