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

I 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?

Merry Disabled Christmas 2010

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!

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.

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 .

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?

Why the iBot is Spending the Night in the Garage

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.

I've Been Faking the Whole Wheelchair Thing

For 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.

Whenever 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.

The 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.

Political Advertising- Make it Stop!

(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?

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.

Fall in Maine

Here is a photo montage I threw together.  Enjoy. 

Fall in Maine 2010

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

(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

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

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

As 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

Evil is Lurking Out There- the Rest of the Story

Post 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:

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 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:

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.

Evil is Lurking Out There

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:

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!

I am More than My Genes

(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.
.

I’ve Become an Expert Funambulist

(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.

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

“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.

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.

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.

25 Steps to a Happy Life (part 2 of 2)

In the previous post I introduced my "pearls of wisdom," presenting and briefly discussing the first 10 items on that list. Here are the remaining items:




11. Speak kindly; refuse to engage in hurtful speech. Act kindly; refuse to engage in cruel activities. Think kindly; refuse to engage in mean thoughts.

Of these, “speak kindly” is the most often ignored. Think how many times you’ve been with friends and someone has spoken poorly about a person who was not present. I still get caught up in that sometimes, but I’m improving. I’ve grown to find these conversations boring.

The most challenging of these is to “refuse to engage in mean thoughts.” Although I consider this is a worthy goal for purposes of maintaining inner peace, our unexpressed or un-acted upon thoughts have little impact on others. Our words and actions are what count.

12. Let stuff go. Just let it go.

We spent so much time rethinking and regretting our mistakes, and the mistakes of others. We need to just let stuff go, and move on – no small feat.

13. You have no control over the behavior of others.

As someone who has been a husband, a parent, and a manager for much of my life, I can attest to both the truthfulness and frustration of this statement. We want to believe that our influence over people will result in behavioral changes in a direction we desire. This happens once in a while, usually not because it's what we want, but because it's what the other person wants.

14. Replace “I don’t have time for that” with “that is not a priority,” and see if it still holds water.

Although it doesn't seem this way, we all have a lot of time on our hands. We just have difficulty managing it. Ideally, we spend adequate time on our highest priorities and less time time on our lowest priorities. Most of us, myself included, fail miserably at this allocation task.

When you say that you don't have time for a certain activity, in essence what you are saying is that this activity is not a priority. In an effort to make sure that you are not avoiding high priority activities under the guise of not having time for them, try substituting the phrase "that is not a priority" when you would usually say "I don't have time for that," and see if it still makes sense.       

15. Serve others.

I'm certainly doing more of this now that I have abundant time on my hands. I manage my daughter’s college expenses for her (student loans, etc).  I help out with a nonprofit called CCSVI Alliance.  I take time to share my experiences as a disabled person at this blog.  “Serve others” is a concept that pertains to close, personal relationships as well as to society in general.

16. Forgive others.

When you forgive others their transgressions, you're not only making their lives better, but your own as well. Carrying around anger and seeking revenge are high prices to pay for someone else's mistake.

17. Do one thing at a time.

This is a requirement of mindfulness. Stop multi-tasking. Ha! Try to sell this concept to anyone under the age of 30.

18. You are not in charge, but you are not helpless either.

It is liberating to admit that we cannot control events or others reactions to those events. Yet, it would be unsettling if we thought we had no influence at all. We have influence, but we must accept our considerable limitations.

19. Suffering is caused by attachment to desire. Desire is wanting something you don’t have.

Again, this flies in the face of modern American culture, where the object is to keep up with the Jones, or to die with the most toys. It's a senseless game. Study after study has shown a weak or even negative correlation between material possessions and happiness. On the other hand, I’d rather be rich and miserable than poor and miserable (or does that statement only reveal my lack of understanding of this concept?).

20. Envision an outcome, only in order to set a direction. Don’t invest in the outcome; invest in the process.

Outcomes are often outside of our control. However, the processes that we employ in order to move toward a goal are within our control, and it's the processes themselves that often provide fulfillment.

21. All we have is right now. Live it!

As someone with a highly uncertain future, staying in the moment is deeply important to me, and something that I work on constantly. I try to live each day as if it could be my last. Of course as a matter of practicality, this is impossible. But it’s the process of working toward this goal that matters.

22. You only have so much capacity for empathy. Conserve it for the important stuff. 

The best way to stop feeling bad for everyone’s misfortunes is to stop watching television news. At least 50% of the local and national news is designed to make you feel bad about stuff: accidents, fires, wars, global warming, recessions, starving children…there is no end to it. If you at least get your news in the paper or online, you can skip over the items that you don’t need to be concerned with. Yes, the world is full of horrors, but being reminded of that in daily doses at 6:00 in the morning, noon, and 5:00, 6:00, and again at 7:00 in the evening is not helping you to lead a happy life.

For a wonderful discussion of the evolution of "empathy," click here. 

23. Spend time with people who are different from you.

And do that with an open mind. See what you can learn from them. Consider the possibility that your culture, or your circle of like-minded people, may not have everything right.

24. Be creative and have crazy ideas. Take risks.

You only get to live life once, and as one who is beyond the halfway mark, I'm here to tell you that it goes by fast. If we spend all of our time in our comfort zone, never venturing outside to consider new ideas or push existing boundaries, then we’ve wasted a precious opportunity. Dare to be creative. Entertain crazy ideas. Don't be afraid to take risks. Remember to forgive yourself, and forget the pain, when you fail. I'm convinced that life is so much more enjoyable when it is lived this way.

25. Life hasn't promised us anything. Life doesn’t owe us anything.

The odds are so incredibly stacked against any individual actually being born. Consider the chain of events that lead to your birth. Every direct ancestor of yours had to survive childbirth, live to at least puberty, and successfully procreate.  The offspring of that activity then had to meet with the same success. This had to happen innumerable times, and it had to happen to a great extent before the advent of modern medicine. Not one single ancestor broke the chain of success.

For much of human history, the odds of this success were poor for any given individual, let alone for an entire line of ancestors. When you think about it this way, we are so extremely fortunate to have ever been born that life doesn't owe us anything at all. Just by having been born at all, we are forever indebted to life. This renders every day and every experience a bonus, a gift. If you enjoy one day of happiness or 100 years of it, you win.

26. Pick up after yourself.

27. Stop being such an asshole.

The last two items were added by my wife. 

25 Steps to a Happy Life (part 1 of 2)

(Photo credit: Steven Betts)

…or something like that.

Although my progression from a healthy person to a handicapped person was slow and steady, my transition from a working person to a legally disabled person was abrupt, like jumping off a cliff. One day I was working. The next I was retired, probably for life, at age 45. That’s just the way the system works. I’m reminded of the old saying, “It's not the fall that kills you; it’s the sudden deceleration at the bottom.” I was decelerating in a hurry.

But it didn’t have to be that way. This transition was an opportunity for me to reevaluate what was truly important, and consider how life should best be lived. I had a lot of time on my hands to ponder such intangibles, so naturally I came up with a list. I’d like to share this with you, not because I think I have it all figured out, but because I have the time for this type of introspection, and maybe you don’t.

I call the list my "pearls of wisdom," and I review it on a regular basis. I don't simply read down through the list, but instead pause at each item and ask myself, "How am I doing on this issue?" As you might expect, I'm doing well on some and not so well on others. This is a living, breathing list which I update frequently. It’s not perfect, and I know that it’s missing some wonderful pieces of wisdom, but I find it helpful nonetheless.

You may notice that many of these items are borrowed from Zen philosophy. I regard Buddhism as a bizarre religion, yet within it I’ve found many practical lessons for enjoying a happy life. Here's my list, with some commentary:

1.  Eliminate physical and mental clutter in your life. Simplify, simplify, simplify.

I surround myself with gadgets. I have computers and phones of all shapes and sizes. I have televisions and MP3 players and DVD players. I have stereos and indoor/outdoor thermometers and a robotic wheelchair and so many more things. I'm addicted to techno-crap. I know this isn't good for me, but like a heroin user, I crave my next fix.

    I don't know if I'll ever get better at this, but I put it on my list in hopes that one day I will.

2.  Live fully in the present moment. Do not dwell on the past or the future.

It is so natural for me, and I’m guessing for you as well, to replay past mistakes and regrets over and over in my mind. Also, I continuously look forward to the next significant event on my calendar- a trip, party, sporting event, etc. My mind shouldn’t be focused on events of the past or future. Instead I should be concentrating on the here and now.

3.  Work on being mindful all the time.

To be mindful means to be totally focused and engaged in what is happening around you at the moment- not distracted with thoughts about anything else. Take notice of everything- the sights, smells, tastes, sounds, and feel. Don’t let your mind wander from the task at hand (no matter how boring it might be).

4.  See each incident for what it is and don't carry any expectations forward to apply to any other incidents.

Human nature compels us to identify patterns, even where none exist. “Because he was mean to me once, he will be mean to me in the future.” Or, “Because this person of such and such heritage was lazy, all others of his heritage must be lazy too.” Well, maybe these statements are true, but quite likely they are not. Our tendency to over-generalize results in missed opportunities.

5.  You have already succeeded. You are where you are supposed to be. You have nowhere to go. You are already there.

This concept flies squarely in the face of modern American societal norms. We are all about self-improvement, identifying our weaknesses, re-inventing ourselves, etc. Yet, this item suggests a completely different tact. I can’t quite accept it as written though. Maybe there is some happy medium, where we are not totally complacent, but neither are we obsessed with self improvement.

Interestingly, this piece of Zen wisdom is inherently contradictory. If I am already where I need to be, then why am I studying Zen philosophy and seeking higher wisdom? Interesting paradox… 

6.  Live a life without apology (except when you truly have something to apologize for).

My friend Katja turned me onto this article:

    http://www.peertrainer.com/how_to_live_without_apology.aspx

This is a different way of stating the Zen concept in item 5 (You have already succeeded. You are where you are supposed to be…). In this case the author of the article talks about how we don't need to seek other’s approval, and apologize when we don't meet their expectations. Excellent concept.

7.  Give your feelings a chance to happen. Hear them out and then let them move on. Do not let them control you. Your thoughts and feelings come and go. They are not you.

This all makes sense to me, sort of. We can't be consumed by our thoughts and feelings. Yet, if we are not our thoughts and feelings, then what are we? I haven't figured that out yet.

8.  Practice moderation in all things.

Ya, right. I still watch too much TV, and surf the Internet too often. But I eat less and drink a lot less alcohol than I used to. Progress…

9.  When you are with the person you love just be there in total awareness. Be present in the moment without assuming or expecting anything.

This is the application of items 2, 3, and 4 to personal relationships.

10. You are not dependent on one another. You and the person you love are two self sufficient people who chose to travel through life together. One of you does not complete the other.

Ah, this is a loaded one. Modern romantic love concepts, which have not been around all that long in the grand scheme of human evolution, would have you believe that individuals are incomplete and lost until they find their soul-mate. Together, the two individuals merge into a single entity, and no longer exist independently.

At the risk of being labeled an unromantic person, and I have been more than once, I’m intrigued by the Zen approach to romance and love. “I am whole. You are whole. Let’s walk together, hand in hand.” Sharing your life’s journey with another, if it is the right person, can make life so much more enjoyable and meaningful. It has for me.

To be continued….

My MS/Disability Library

(Photo credit: Wikipedia)

I'm not a voracious reader, but I am a steady one. I always have a book going.

In the nine years since my diagnosis I've read a number of books about MS and other disability issues. Below is a list. I didn’t comment on each book in the list. Frankly, I can't remember the content of most of them. This bothers me. The section of my brain in charge of remembering the contents of books or movies doesn't work very well. Same deal with the section that is supposed to remember people's names, or a funny joke. I don't know if this is an MS (multiple sclerosis) or an M.S. (Mitchell Sturgeon) thing, but it's definitely a thing.

Please email me titles, along with your impressions, of other MS or disability related books. Click on my email icon on the top right-hand side of my blog. I'll summarize these in a future post.

Here’s my list:
 
Waist-High in the World, A Life Among the Nondisabled
Nancy Mairs 1996

Although this book was written well before I even knew what MS was, the story still rings true. It's a memoir, describing the author's journey from the time of diagnosis until the onset of significant disability. Although things were different in medical terms 10 or 15 years ago, the manner in which Ms. Mairs has dealt with the disease shows timeless strength and courage.

Fall Down Laughing: How Squiggy Caught Multiple Sclerosis and Didn't Tell Nobody
David L. Lander 2000

This is the first of several books on my list of the celebrity memoir type. Strangely, the writing quality of these non-writers is usually pretty good. I suspect heavy editing. Only Montel Williams admits to having a co-writer (see below). Their story isn't in-and-of-itself any more compelling than mine or yours. Yet, let's face it, it's more interesting to read about celebrity experiences than it is to read about Average Joe experiences, all else being equal. We are a society that loves our celebrities.

The only interesting point I remember about this book is how strongly David Lander felt that he needed to conceal his disease in order to survive in the acting profession. Unfortunately, he may have waited too long, as people started making assumptions to explain his poor walking (they thought he was a drunk).

Alternative Medicine and Multiple Sclerosis
Alan C Bowling 2001

This book was given to me by my neurologist, who has been consistent from the beginning in admitting that he has very few weapons with which to combat my primary progressive multiple sclerosis. I found this book to be well-written and well researched, but frankly I'm just not an alternative treatment kind of guy (says the guy who just had CCSVI treatment).

Meeting the Challenge of Progressive Multiple Sclerosis
Patricia K. Coyle, June Halper 2001

Multiple Sclerosis, Current Status And Strategies for the Future
Janet E. Joy, Richard B. Johnston, editors 2001

This virtual encyclopedia of all things MS came out of the Institute of Medicine, via the National Academies Press. Unfortunately, so many things have changed since 2001 that this book has become out of date. Hopefully an updated edition is in the works. Frankly though, things are changing so fast in the MS world these days, I don't know if a comprehensive book can ever be published without finding itself almost immediately obsolete. This is a good thing. The lack of change that we used to see in the MS world wasn't working for us.

When the Road Turns, Inspirational Stories by and About People with MS
Margot Russell 2001

The Art of Getting Well, A Five-Step Plan for Maximizing Health When You Have a Chronic Illness
David Spero 2002

Lucky Man: A Memoir
Michael J. Fox 2002

This is the first of Michael J. Fox's two memoirs. His life certainly makes a compelling story, Parkinson's disease and all. I've often said that the MS community needs a Michael J. Fox – a big-time celebrity activist for his or her disease. Maybe Julia Roberts or George Clooney. I would accept any member of the cast of Seinfeld, but they are getting a little old for an MS diagnosis. 

Multiple Sclerosis, A New Journey
Richard C. Senelick 2003

When Walking Fails, Mobility Problems Of Adults with Chronic Conditions
Lisa I. Iezzoni 2003

Climbing Higher
Montel Williams with Lawrence Grobel 2004















Blindsided, Lifting a Life Above Illness, A Reluctant Memoir
Richard M. Cohen 2004

Richard Cohen, a well known journalist in his own right, is the husband of TV personality Meredith Vieira. Not only has he fought multiple sclerosis, but also two bouts with cancer. This book is an excellent read.

Curing MS, How Science Is Solving the Mysteries of Multiple Sclerosis
Howard L. Weiner 2004

I hate the title of this book. Maybe from the perspective of a big-shot doctor who has dedicated his life to unraveling the mysteries of multiple sclerosis, it was time to write a book. However, from the perspective of a long-suffering multiple sclerosis patient who has received zero benefit to date from the medical community (unless my CCSVI treatment worked), I just don't see it. This is a good read for MS historians (if such a thing exists), or for fans of Dr. Weiner (if such a thing exists). Excuse me if I'm a little sour about Dr. Weiner, but he is publicly trashed my favorite MS theory, CCSVI, so I don't have much use for him right now.

Barrier Free Travel, A Nuts and Bolts Guide for Wheelers and Slow Walkers, Second Edition
Candy Harrington 2005

Candy is a wonderful disability travel writer. She also publishes a quarterly magazine called Emerging Horizons, and maintains a blog called Barrier Free Travels.

Yoga and Multiple Sclerosis, A Journey to Health and Healing
Loren M. Fishman, Eric L. Small 2007

This book does a decent job of presenting a variety of yoga poses that readers can choose from depending on their level of disability. After reading this book I practiced a few of the poses daily, for a number of weeks. I guess I'm just not a yoga guy, because it's been quite a while since I've practiced any of these poses.

Multiple Sclerosis, Your Legal Rights. Third edition
Lanny Perkins, Sara Perkins 2008

This is a must-read for all MS patients, addressing issues such as: insurance, debt, disability, taxes, family law, discrimination, etc. 

Living with Progressive Multiple Sclerosis, Overcoming the Challenges, Second Edition
Patricia Coyle 2008

This was given to me by one of my favorite physical therapists, Judy Sweeney. You can read about Judy here.

101 Accessible Vacations, Travel Ideas For Wheelers And Slow Walkers
Candy Harrington 2008

It was because of this book that my wife and I enjoyed an incredible Caribbean vacation in April of this year.

Always Looking Up, The Adventures of an Incurable Optimist
Michael J. Fox 2009

This is Fox's second memoir – probably not as compelling as the first, but I did manage to get through it and was happy that I did.

Primary Progressive Multiple Sclerosis, What You Need to Know
Nancy Holland, Jack Burks, Diana Schneider 2010

Multiple Sclerosis Manifesto, Action to Take, Principles to Live by
Julie Stachowiak, 2010

I am currently reading this book. My friend, the Wheelchair Kamikaze, recommends it. 

I’ve also borrowed a book or two from the local library. Here are a couple titles that I recall:

As for Tomorrow, I Cannot Say: 33 Years with Multiple Sclerosis
Diana Neutze, 2002

The style of writing and level of intellect of this author is very similar to Nancy Mairs, the first author in this list. If you like one, I think you'll like the other. I do. Ms. Neutze still maintains a blog called Living with multiple sclerosis.

Caddy for Life: The Bruce Edwards Story
John Feinstein, 2005

In the strictest sense this is not a disability story. It is certainly not an MS story. It's an accounting of the graceful passing of well-known golf caddy Bruce Edwards, from ALS. If you're a golf fan, this is a heart wrenching story and a must-read.