My iBOT Gets Recharged

Like a cat with nine lives, my iBOT wheelchair keeps cheating death.

For those of you not in the know, the iBOT is the most incredible wheelchair ever built. Unfortunately, due to bureaucratic red tape and insurance company cold-heartedness, this wheelchair is no longer manufactured or sold. A couple of years ago, the previous manufacturer, Independence Technology, stopped supporting it with parts and service. I’ve been holding my breath ever since.

Finally, a few weeks ago, my batteries began to fail. Other iBOT owners have toyed around with various companies that claimed to be able to recharge spent batteries. These attempts proved frustrating in terms of both product quality and customer service. I began to think that when my batteries failed my iBOT experience would be over. Not so fast.

I checked in at our users' group on Facebook called Save the iBOT to see if anyone had found a new battery vendor. A couple of folks had used a company in Washington, and one user had reported good results. I obtained the contact information and called Tom at Battery Pack Rebuilders. Indeed, Tom explained, he had rebuilt three sets of iBOT batteries and they all seemed to be working well. Even better, his fee for rebuilding batteries was lower than Independence Technology’s.

I explained to Tom that I had an important event coming up on August 20, and asked if he could expedite the turnaround. He said he could. In fact, he received my batteries on a Friday, worked on them on Saturday, and shipped them back to me on Monday. I have run them through an entire cycle and they appear to be functioning just as well as the batteries from Independence Technology.

There are still a million things that can go wrong with my iBOT, things that I won’t be able to fix. But for now, the iBOT lives to see another day, and this coming Saturday will be a very special day. Check back next week to read more about it.

To see me and my iBOT in action, check out my YouTube channel.

Read this good news about the next generation of iBOTs.

The iBot Lives!

This is the news we've all been waiting for. A little company called Toyota will partner with DEKA to develop and manufacture the next generation of iBot. Read the press release here, and be sure to watch the video embedded in the story.

To see video of my iBot in action, click here.

The Social Psychology Implications of iBot Stair Climbing

Yeah, you read that right. This subject is better suited for a PhD dissertation, but instead I’ll tackle it in a single blog post.

On Saturday night Kim and I went out to dinner with our friends Deb and Steve at the Snow Squall, a local bar and restaurant that we absolutely love. I made reservations for their dining room, as opposed to the pub section where I usually sit. This would require me to descend about four steps in my iBot wheelchair.

In years past I was able to climb stairs myself in the iBot, but I no longer have enough strength and dexterity in my arms. I require Kim’s assistance. We arrived at the Snow squall at six o’clock, and the crowd was thin. Kim guided me down the stairs without incident, and we settled in for a leisurely meal.

Throughout the dinner, more patrons arrived, and soon it was a full house. We finished an outstanding meal (Chef Heather cooks no other type), settled the checks, and prepared to ascend the stairs. Allow me to describe the scene, as I imagine it from the perspective of a random patron who dared to watch:

A dashing gentleman in a power wheelchair backs up against the bottom step. A woman, presumably his much younger wife (is he rich?), strikes an athletic pose behind him, one foot on the first step and the other foot on the second. The gentleman manipulates buttons and knobs on his wheelchair controller such that the seat rises a bit and then tilts to the rear. His wife grabs onto the top of his backrest and pulls. Some motor within the wheelchair engages and boosts the front wheels up and over the rear wheels, and the chair is one step higher. This process continues until the chair, its occupant, and its navigator are at the top of the steps, at which time the gentleman pushes more buttons and knobs, and the chair transforms back to normal. Their demeanor throughout the operation is nonchalant. Apparently, this is part of their routine – how they navigate through a disabled-unfriendly world.

Here’s the social psychology implication. There were perhaps forty people in the lower dining room and another forty in the upper pub area. At least half those people had a clear line of sight to me. Yet, as I scanned the crowd, only a couple of them observed me climb the stairs in my wheelchair. Nearly every one of those people must have been fascinated by my chair’s capabilities. Why didn’t more of them watch? I would have watched.

In our society, it is paramount that we not offend others, especially people who are disadvantaged. And we are on our best manners when we dine at an establishment where the meals cost more than $15. Most of the patrons were probably concerned that watching me climb the stairs would be offensive to me or would constitute an invasion of my privacy. Maybe they thought I hated being seen this way – that I already felt conspicuous enough, and their staring would only make me feel worse. Maybe they didn’t know what they thought, but it just felt wrong to look. Whatever the reason, most of these people either completely ignored me, or they only snuck a peek here and there. What a shame. What a missed opportunity! What a gross over-application of the duty to not offend.

The fact is that I absolutely love to have people watch me climb stairs. I’m an iBot exhibitionist. I get off by demonstrating how technologically advanced my iBot is, how talented my wife is, and how cool I am about the entire process. But these people had no way of knowing this. How could they?

Maybe the responsibility falls squarely on me to let the potential audience know that they are more than welcome to gawk at us, engage us in conversation about it, and applaud enthusiastically at the conclusion of the show. The question becomes, then, how do I convey this message.

One option is for me to clear my throat and in a very loud voice announce, “May I have your attention please? May I have your attention please? I am about to climb these stairs in a wheelchair. This is something you have probably never seen before, and may never see again. I invite you to put down your utensils, grab your drink, and adjust your seats so you have a comfortable view. In no way will I consider your watching to be inappropriate. Frankly, I would be slightly offended if you didn’t watch. This is very cool stuff. There will be a brief question-and-answer period after I get to the top of the stairs.”

In a perfect world, devoid of unnecessary human insecurities and burdensome social constructs, this would be appropriate behavior. But, frankly, I don’t know if I have the cahones. What if everyone ignored me and just continued dining? What if I came off as needy and insecure? What if, what if, what if? No, I think I’ll forgo the opportunity to be an agent for social change, and just keep doing my thing without drawing attention to myself. It’s just too risky.


Note: For those of you who have not seen the iBot in action, click here for a video of us in Jamaica last year, or watch below.

Save the IBot Update: the FDA Gives Us Some Good News

You might call it an early Christmas present.

As I indicated in my previous iBot update, the FDA held a hearing on December 12 to consider DEKA’s petition to change the iBot medical classification. As I wrote in that post:

“…The iBot needs a new manufacturer. But first, the regulatory environment must be improved. DEKA initiated an application to have the FDA modify the status of the iBot from a Class III medical device to Class II medical device. This would significantly reduce the regulatory burden on the product…On December 12 a team from DEKA will meet with the FDA Medical Devices Advisory Committee (it would have been sooner but for the government shutdown)…If (the application) is eventually approved, DEKA will be in a stronger position to recruit new manufacturing partners.”

Now we have this news from the Department of Health and Human Services meeting notes: 

“…the panelists recommended a Class II designation for stair-climbing wheelchairs...”

Perfect!

There were two major regulatory impediments making it difficult for the iBot to be commercially viable. First, there was the Class III to Class II issue, which is apparently behind us. Second, there is the fact that Medicare will not reimburse patients for the iBot wheelchair. I don’t hold out much hope for changing the Medicare issue in the near future, but maybe I'm wrong. 

By changing the iBot from a Class III device to Class II Device, a potential manufacturing partner could relatively easily improve the iBot in a number of ways, and make it more marketable to more users. Perhaps these improvements could eventually make it so that Medicare would reimburse patients.

I know that DEKA, with an assist from Huey 091, is recruiting potential manufacturing partners, and what happened on December 12 in Washington can only make the iBot a more appealing venture. Hopefully, this will be enough to lure in somebody. Maybe there was a group waiting in the wings and they will come forward soon because of this decision. It's more likely that DEKA still has a lot of work to do, but they now have a better case to make with these companies.

How big of a deal is this decision? That remains to be seen. Perhaps it was too little too late, or perhaps it was just what the doctor ordered. Only time will tell which of these two clichés will apply.

Here’s a video of Alan Brown’s public testimony before the panel. Alan is an iBot user and a member of the Board of Directors for the Christopher and Dana Reeve Foundation. He is a strong advocate for the iBot and for wheelchair users in general, and a gifted public speaker. Please watch and enjoy.

If you're reading this through email click here to watch the video at YouTube.

Save the IBot Update and My Trip to DEKA

This picture shows Bill Clinton and Dean Kamen in the office of the president. Kamen is on his iBot. (Photo credit: Wikipedia)

The story of the iBot is a potentially heartbreaking one. This exceptional wheelchair, which can climb stairs, navigate difficult terrain in four-wheel-drive mode, and elevate its user up to eye level with standing people, is no longer being manufactured or sold. In fact, if nothing changes, maintenance and parts for the iBot will only be available through March of 2014. After that date, I don't know if my iBot will run 10 minutes or 10 years before a fatal malfunction occurs. Yet, not all hope is lost. Some very talented and dedicated people are still trying to save the iBot.

Through my affiliation with Huey 091 and SavetheiBot.org I was introduced to Joe, the Special Projects Officer at DEKA Research and Development. DEKA is the company founded by entrepreneur and inventor Dean Kamen. They are responsible for such innovative products as the Segway transporter, the iBot wheelchair, and countless other devices that help people lead better lives.

I asked Joe if he could give me a tour of the DEKA facility, and he agreed. One day in early November Kim and I made the hour and half drive from South Portland, Maine to Manchester, New Hampshire.

I’m an engineer, and DEKA is all about that. They have almost 500 technical people on staff in Manchester. Kim is a Middle School Guidance Counselor, and she had only a passing interest in this tour. In fact, she was participating only as a favor for me, which was nothing unusual. Kim is a very generous person.

Joe greeted us when we arrived at DEKA, and introduced our tour guide, Sarah, who is Dean Kamen’s Chief of Staff. Joe indicated that Dean had wanted to meet us, but unfortunately he was out of the office on this day. (Did I mention that a couple of years ago I was almost personally introduced to another great inventor, Steve Wozniak?)

I asked if we were allowed to take pictures, even though I was pretty sure of the answer. Indeed, DEKA works on many top secret projects, and they don’t allow photography inside their facility. I get that.

First, Sarah shared the background story about Dean Kamen and DEKA, showing off a few of the early products he developed. This included a drug delivery system that later became the first insulin pump for diabetics, and a portable dialysis machine.

(Photo credit: Wikipedia)

We were then guided to the machine shop area of the facility, where they have a rare 3-D printer that works with metals. DEKA also operates a bank of more traditional 3-D printers that work with plastics (if any version of these machines can yet be considered traditional). A collection of products that come off of these devices was on display, and they were amazing. If you’re not familiar with 3-D printers, and why every home will have one in the coming years, read this article.

Sarah and Joe then introduced us to some of their more recent projects. Dean is concerned about the availability of potable water in Third World countries, so they developed a pair of products to address this issue. The Slingshot is a self-contained, highly efficient water purification unit that can be easily deployed anywhere in the world. DEKA is partnering with Coca-Cola to make these units available where they are most needed. The Stirling Engine is a self-contained generator appliance that can power a Slingshot and satisfy other local electricity needs using a variety of nonconventional fuels.

The Slingshot and the Stirling Engine are very cool, but the most impressive product we saw was DEKA’s prosthetic arm, called the Luke Arm. Development is being funded by the Department of Defense (DARPA). We met up with the Manager of Engineering, Stewart, who explained the project to us. It’s heartwarming to watch an amputee pick up grapes and place them in his mouth, or drink a bottle of water without crushing or spilling it. The goal is to make this technology available to war veterans with arm amputations, and eventually anyone who can benefit from this prosthetic device.

Our last stop on the tour was the iBot testing facility. Years ago DEKA created a series of indoor obstacles for the purpose of putting the iBot through its paces during development. There are ramps, curbs, stairs, and your worst nightmare of a bumpy walking path. But now it all sits idle, frozen in time while the fate of the iBot is determined. I’m glad we were shown this area, although I was slightly unnerved by its resemblance to a museum exhibit.   Yet, I find it telling that DEKA has not decommissioned this testing facility and reallocated the space to active projects. They obviously haven’t given up, and so neither should we.

After the tour was complete, we enjoyed a lunch with Joe and discussed the future of the iBot. Joe’s number one priority is to facilitate its rebirth. After DEKA developed the iBot in the early 2000’s they licensed the technology to Johnson & Johnson, who created a subsidiary called Independence Technology for the production, sales, and service of the iBot. Five years ago, about six months after I purchased my own iBot, Independence Technology announced that they were discontinuing production. This was due to low sales volume and, I can only assume, business unit losses.

(Photo credit: Esthr)

The primary reason for this product’s commercial failure was its onerous regulatory burden. For one thing, the iBot is categorized as a Class III medical device by the FDA, which means that extraordinary effort is required to obtain approval for any product modifications or enhancements. This places an undue burden on the development team and slows down or prevents improvements that consumers rightfully expect. For this and other reasons, the product underperformed in the marketplace, even though it has been a life-changing success for any individual lucky enough to own one, myself included.

The iBot needs a new manufacturer. But first, the regulatory environment must be improved. DEKA initiated an application to have the FDA modify the status of the iBot from a Class III medical device to Class II medical device. This would significantly reduce the regulatory burden on the product. The FDA received over 280 letters in support of this change, including one from me. On December 12 a team from DEKA will meet with the FDA Medical Devices Advisory Committee (it would have been sooner but for the government shutdown). After the meeting, we should have a much better idea of the viability of this petition. If it is eventually approved, DEKA will be in a stronger position to recruit new manufacturing partners.

I’ll let you know what I hear from the December 12 meeting.

The people at DEKA were extremely friendly and gracious. More than one of them commented about how much they enjoy seeing people like me benefiting from their invention – the iBot. I envy them in that sense. I never worked for a company where I felt I was making such a positive impact in the world (few people do). Also, their affection for Dean Kamen is palpable and infectious. He’s one of my personal heroes.

I can’t thank Joe, Sarah, and Stewart enough for taking the time to share their knowledge and their passion with us. In the end, Kim admitted to me that this trip was much more rewarding than she thought it was going to be. Although the tools employed at DEKA may be highly technical, the folks there are motivated by compassion for others, and it doesn’t take an engineer to appreciate that.

Note: for more information on the effort to save the iBot, please visit these sites:

America’s Huey 091 Foundation

SavetheiBot.org

Save the iBot (Facebook Page)

My iBot Videos

Bahamas 2012, #7: Taking the iBot to the Bahamas

I put together a short video showing how the iBot performed in the Bahamas. Check back in the coming days for my last two posts about our wonderful vacation. Enjoy.

Click for next post: Bahamas 2012, #8: Getting Home

Click for previous post: Bahamas 2012, #6: More Stuff We Did

Here are my other iBot videos:

Taking the iBot to the Beach

Taking the iBot to Two Lights State Park

Taking the iBot to Bar Harbor

Taking the iBot to Bug Light

Taking the iBot to Crotched Mountain

Save the iBot Update

As you may already know, the iBot, this life-changing mobility device, is no longer being manufactured. Why? It’s because of a complex set of circumstances generally having to do with too much government red tape and a pervasive attitude that disabled people do not deserve to live highly engaged lives – getting us from bedroom to bathroom to kitchen should be enough.

But we are not taking this sitting down. There are several efforts underway to save the iBot.

I help out with a nonprofit called America’s Huey 091 Foundation, which has so far purchased 23 iBots and provided them to disabled veterans. The Foundation feels so strongly about the life-changing effect that the iBot has on disabled veterans and civilians alike, that they have made it their mission to revive the iBot Program. They are working with the inventor, Dean Kamen, and a variety of other influential advocates, in an all-out blitz to get this done.

The Hallmark Channel has produced a new movie, called Cancel Christmas, which features a young, disabled boy who is given an iBot for Christmas. In fact, the Foundation helped the Hallmark Channel gain access to the iBot used in the movie. Of course, the cruel irony here is that nobody in the real world will find an iBot under their Christmas tree this year.  Nevertheless, this is a touching story, and America’s Huey 091 Foundation is working with the Hallmark Channel to capitalize on the buzz that the movie will create for the iBot.

Click here to view the outstanding, six minute documentary that America’s Huey 091 Foundation has produced. Although Cancel Christmas is a made-for-TV movie, the Foundation, with permission from Hallmark, is presenting Cancel Christmas in a number of theaters. The above referenced documentary will be shown in those theaters as well. Check the Foundation's homepage for local theater viewing times.

Click here for more information about Cancel Christmas, including viewing times on the Hallmark Channel.

To visit the iBot page at America’s Huey 091 Foundation click on the word “iBot” in the top menu of their homepage, or click here.

If you are so inclined, please donate generously to the Foundation, not only to help disabled veterans, but to help save the iBot for veterans and civilians alike.

Another organization, which is working hand-in-hand with America's Huey 091 Foundation, is SavetheiBot.org. My friend Max Burt is a tireless advocate, and an iBot user himself. Please visit this website or the associated Facebook group to learn more about our efforts to save the iBot, and to sign our petition.

Click here to visit my YouTube channel too enjoy some videos of me and my iBot in action.

And finally, click here to peruse my previous blog posts about the iBot.

Game-changing technological advances which significantly improve the lives of disabled people should not simply fade away because of correctable bureaucratic flaws. For those of us benefiting from this wonderful device, allowing the iBot to become extinct would be like over-regulating and under-supporting insulin pumps or prosthetic hips until they were simply no longer available. Would we let that happen? I don’t think so.

Taking the iBot to Crotched Mountain

Kim and I recently took a hike in the woods.

“But Mitch, aren’t you in a wheelchair?”

Yes. Yes I am.

Please visit the Crotched Mountain Foundation to learn more about their accessible hiking trails.

Please visit www.savetheiBot.org for more information about how to help save this life-changing wheelchair.

Click here (and then scroll down) to read my other iBot posts. 

Click here to view my other iBot videos. 

Click here to win a million dollars.

Neighborhood Excursion #1 – Bug Light Park

I posted here and here about our recent move to a more walkable neighborhood. I plan to make a series of slideshows and/or videos where I share different excursions that I take in my new neighborhood, using my iBot wheelchair. Here is the first such slideshow, my excursion to Bug Light Park (not Bud Light). The one-way trip from my house to the park took 18 minutes. The video, however, is less than 5 minutes long.

Enjoy.

For Every 100 People That Walk by Me When I'm in iBot Balance Mode…

… I bet 30 of them think something like, “Wow, that is strange, but I’m going to carry on as if it’s nothing interesting at all. Must…not…reveal…amazement.” And they’ll say this to themselves for a wide variety of reasons: too cool, too shy, too polite, fugitive from justice.

When I’m zipping around in balance mode in my iBot, it’s quite a site. I have to believe that more is going through people’s heads than they let on. This post is my best guess as to what 100 average people are actually thinking when they walk by me.

If you’d like to see me in action, check out this video.

20 of these people that walk by me are mothers or grandmothers, and they straddle that fine line between sympathy and pity. "Well isn't that nice. The poor cripple at least has a fun buggy to drive around.” Their maternal expressions give them away.

10 say to themselves, “Cool wheelie!” And a few of those folks are even good enough to utter that phrase out loud. Unfortunately, it's probably the most common comment I hear. Sigh.

9 of them say to themselves, "I think I've heard of that wheelchair somewhere, but I've never seen one. Cool. I should say something to him…oops, too late. He's gone.” Then their thoughts return to whence they came…“I wonder why my cat’s butt goes up in the air when I pat her. If nobody buys a ticket to a movie do they still show it?” I can distinguish these individuals by their vacant stares.

8 of them are adolescents and teenagers who all think, “He’s so lucky. I want one of those!” Knowing what turmoil awaits them in the coming years, especially the girls, I don’t think I would trade places with them even if I could.

I suppose about 7 of them really and truly don't see me as out of the ordinary at all. They are completely preoccupied. If they're contemplating a potential cure for cancer, good for them. If they are replaying the latest episode of Jersey Shore in their heads, well that's just sad.

Based on the reactions of mothers with small children, who represent about 6 out of 100 people I encounter, they probably think to themselves, “Danger…unidentified object defying laws of physics…must …protect…offspring,” as they urgently pull their children well away from my path, the very act of which generates more injury and fear than I ever could have. It’s instinctive, though, so I get it.

In my mind, also referred to as my little dream world, 5 out of 100 are gorgeous women who think, “My goodness, I must have that handsome man in that sexy wheelchair.” But, alas, they always go home frustrated, as I’m a happily married man.

Another 4 out of 100 people that I run into are physically disabled themselves. You might think that because of our common challenges these folks would be more likely than others to show an interest in my unusual method of mobility. But this is not the case. Of these 4 people, 2 of them do not react to me in any way, and think to themselves, "Showoff!" The other two think, "Lucky bastard. I wish I had one of those chairs." Maybe they don't consider me to be one of them at all. Perhaps there is a secret handshake or password of which I was never informed?

And with about 1 person out of 100, I don’t have to wonder what they are thinking at all, because they come right up to me and engage me in conversation about my iBot. If I'm not in a big hurry, or in a bad mood, I try to make the effort worth their while.

Then there's the one-in-a-million person who would think, "Cool, a wheelchair exactly like mine!" In the two and half years I've owned my iBot, I’ve not yet encountered such an individual, although they are widely rumored to exist, as are unicorns and pharmaceutical companies who want to eliminate diseases rather than simply treat them for the rest of your life while making obscene profits all the while. But I digress…

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.

Taking the iBOT to Bar Harbor

Check out my latest iBOT action video.  To see my other iBOT videos, look on the right-hand sidebar of my blog.  Enjoy!

Save the iBOT

Imagine for a moment that you can’t walk.  Don’t worry- it’s just pretend.  Then, imagine that one day you discover a device that gives you a higher quality of life and greater independence. Because of this device you once again go places and do things that usually only walking people can. You became re-integrated into the fabric of society, the everyday comings and goings of healthy people.  How would this change your life?

Then, imagine that after only a few years, the device no longer exists.

When we discover something that reduces human suffering and makes the world more accessible, it should not simply fade away because of red tape and bad government policy. But that’s exactly what is happening. The iBOT is fading away.

But there is a group of people working to change that. How can you help? First, join the Facebook group called Save the iBOT, which was founded by my friend Max Burt, an iBOT user from the UK. Soon, this group will be launching a website with more information about how you can join the effort. Once the new website is up and running, you’ll see announcements on Facebook and here at Enjoying the Ride.

Help us save the iBOT, because shouldn’t humanitarian progress be a one way street?

To read about my iBOT experiences, click here.

Soldier Gary Linfoot

Alan T. Brown, iBOT user and activist.

iBOT inventor Dean Kamen

Two videos of me in my iBOT:

 

My Disabled Cruise Story - Chapter 2 - First Port of Call

I’ve been asked several times what my favorite part of the cruise was. I can’t decide. Here are some candidates:

• breathtaking scenery
• clear, blue water under puffy white clouds and equally blue skies
• people-watching (the beautiful ones, of course, but also the interesting ones)
• bar hopping without driving or going out in the weather
• great food, in abundance
• being pampered
• free ice cream
• blackjack
• great theater-style entertainment
• a guy playing the guitar and singing any song you know
• a different guy playing the piano and singing any song you know
• the architecture, decorations, and furnishings onboard
• meeting new people (both crew and passengers)
• a different, exotic port of call each day, but need to unpack only once
• knowing that my wife is having as good or maybe even a better time than I am

I had all this at my fingertips on the ship, without needing to bother with my handicapped van or a jacket, hat, or mittens even once. It was just so easy, available, and accessible. This was one of those rare vacations that I didn’t feel like I needed another vacation to recover from the first one.

I remember that when I was at the rehab hospital being qualified as an iBOT owner, I told the therapist that I doubted I would spend much time in balance mode. I was afraid it would freak people out when they saw a 220 pound man elevated to normal height zipping toward them on two wheels. I suspect I was right about the freaking out part, but I was definitely wrong when I assumed that I wouldn't use balance mode often. I choose balance mode every chance I can when I’m out in public. I love it. I've become an iBOT exhibitionist.

I spoke to Independence Technology, the manufacturer of the iBOT, about a minor maintenance issue a few weeks ago. While making small talk, I mentioned that I would be going on a cruise soon. About 10 minutes after I hung up the phone, the representative from Independence Technology called me back.

She said, "Since you indicated that you are going on a cruise I am obligated to inform you that you absolutely CANNOT use the balance mode on the cruise ship. The ship's swaying will cause a malfunction in the gyroscopes that control the iBOT in this mode."

I responded, "Duly noted. However, I must tell you that I've done a lot of things in the iBOT that you've told me not to do, and I’m going to try out balance mode on the ship as well."

She was pleasant- just doing her job.

I attract a lot of attention at the shopping mall, downtown, or at the grocery store when I'm up in balance mode. But, for whatever reason, the level of attention was two or even threefold during the cruise. People stared shamelessly at me. They came up to me and posed questions. They asked my permission to take photographs of me. They asked where they could buy an iBOT for grandma (they can’t). They spoke in hushed tones to one another about me and my wheelchair as if I couldn't hear them. I loved it.

For Kim, in addition to the wonderful items I listed in the opening, there were all sorts of athletic activities that she could take part in both on the ship and at the ports of call. On Tuesday morning, as the ship was docking at Labadee, Haiti, Kim decided to try out the surf simulator on the cruise ship. She chose to use a boogie board. Below is the video.

At about 10 a.m. on Tuesday we walked down the dock from the ship to the Royal Caribbean resort in Labadee, Haiti. Labadee is a manufactured little town- a la Disney. You don't get to see the real Haiti at all, but that’s probably a good thing.  Below is a video we took from the ship.
 

The front half of Labadee was perfectly accessible, with concrete sidewalks. However, toward the back of the resort I had to follow a sometimes hilly dirt road. For many wheelchairs, both manual and power, this would have been problematic. Of course, it was no problem for the iBOT in four wheel drive mode.

Kim tried parasailing in Labadee, and loved it. While she was flying around over the cool, blue waters, I explored the resort. Just a month earlier I had undergone experimental MS surgery for a condition called CCSVI. Many people who have had this procedure reported an almost immediate improvement in one very common MS symptom – heat intolerance. Haiti was about 90° and very humid that day. I was able to confirm, with certainty, that my heat intolerance has not improved one bit.

The left side of my body has always preceded the right side in terms of progression. What happens (or more appropriately, what no longer happens) on my left side today will be echoed by my right side six months or a year later. But what about my left side? Does it have a preview of what is to come? It does, in the form of heat sensitivity. The way that my body feels when my core temperature is elevated is actually a window as to how I’ll feel at normal body temperatures about a year later. Does this make sense? If not I’ll be happy to provide a table, chart, or spreadsheet with more detail.

Because my right hand is less disabled than my left hand, I have the iBOT set up so that I control the joystick with my left hand, leaving my right hand free for, well, everything else. However, due to the uncomfortably hot weather, and the fact that I had already used my left hand on the joystick a lot that day, as we were heading back to the ship my left hand became too fatigued to operate the joystick. I had to reach over with my right hand for a while to give my left hand a rest.

When we got back to our cabin it was clear that I had overdone it that day in terms of exposure to the heat. Kim got me a cold washcloth to put on my face and I lay down on the bed for a couple of hours. By the time we went to dinner, however, I was fully recovered (I still had MS though).

Dinner was, of course, wonderful. After dinner we went to the top deck and enjoyed views of the northern coastline of Haiti as we cruised west towards Jamaica. Later that evening I won $112 on blackjack. Any guesses on whether I held on to those winnings all week?

Oh, and the iBOT balance mode worked flawlessly the entire week. Apparently, iBOTs don’t get seasick after all.

To be continued…click here

Piano bar guy

parade on the royal promenade

main dining room

favorite pub onboard

Check Out My New Video of Two Lights State Park

In the top right hand corner of the page...enjoy.

Or watch it here. 

This is Not My Mother's Wheelchair (Part 2)

So the iBOT story does not have a happy ending...for now.

In December of 2008 I received, along with all the other iBOT owners, a most unwelcome letter. Due to the fact that the iBOT was not selling at an acceptable rate to support the business model, Independence Technology ceased production and sales of the device. Thankfully, they will support the iBOT with service and parts for a period of five years.

The letter indicated that a key reason for the failure of this business was that insurance companies, including the government owned entities like Medicare and Medicaid, were not reimbursing patients for these chairs. Independence Technology has not provided a firm number, but estimates are that they sold only a few hundred iBOTs. I've been all over the country in my iBOT for a year now, and have not yet happened upon another iBOT.

There are a few people, including Dean Kamen the inventor, who are lobbying Congress to rescue the iBOT by having Medicare and Medicaid reimburse qualified patients for the purchase of iBOTs. If Medicare and Medicaid comply then the private insurance companies may follow suit. Even then, there's no guarantee that the parent company of Independence Technology, Johnson & Johnson Inc., will restart the iBOT business. But it seems likely that either Johnson & Johnson or somebody else would jump at the chance to produce this life changing product if sales can be at least partially subsidized by the insurance companies. It's a difficult time to be lobbying the government to spend more money though (or is it, given all the stimulus spending).

In fairness, I should mention that the iBOT is not for everyone. Only a trained clinician can determine if the iBOT is a suitable fit for a particular patient. However, a large portion of the disabled community would be able to take advantage of this wheelchair if it was again available.

The iBOT represents a huge leap in technology. This is not tweaking. This is not optimizing. This is revolutionizing. It puts disabled individuals in a position to function in a world that is still, and will always be, largely inaccessible. The insurance companies have formulas to determine the value of a wheelchair. There are no factors in their equations for the benefits that the iBOT provides. The iBOT breaks the mold, but the insurance companies continue to evaluate it with outdated metrics. The iBOT is not the most expensive wheelchair in the marketplace. Medicare and Medicaid will often reimburse patients for much more expensive chairs- chairs that meet their narrow criteria.

This may be my last iBOT, because they may never be manufactured again, and because my continued disease progression may eventually make it impractical for me to operate one. Until I received the fateful letter, whenever someone stopped me and asked about the chair I spoke to them with as much conviction as the inventor of the iBOT or the CEO of Independence Technology would have. I was a huge advocate, and I spoke from my heart. Several folks questioned me about the iBOT on behalf of loved ones who were wheelchair users, and I felt great satisfaction in revealing this wonderful option to these families.

Now it's different. I still explain the chair's functions to folks, and tell them how it has changed my life. However, I don't do it with the enthusiasm that I once did, knowing that at some point in the conversation I'll need to explain to them that this device is no longer available. I don't want this to be the last iBOT for me, and for them. I sometimes imagine a day when I’m no longer stopped in the supermarket and asked how the heck I do that- because it just won't be that uncommon to see a wheelchair user zipping through the aisles on two wheels.

Great technological advances are not supposed to go away because of logistics, or red tape, or politics. It will be a tremendous shame if the iBOT just disappears. Here are a few websites and other links about the iBOT, and about the effort to breathe life back into this amazing invention.

http://www.ibotnow.com/home.html

http://disabilities.suite101.com/article.cfm/the_end_of_the_ibot

http://wheelchairrevolution.blogspot.com/

http://www.goibot.com/

Alan Brown Youtube

This is Not My Mother's Wheelchair (Part 1)

When you can't walk, how the heck are you supposed to get from point A to point B?

In early 2008 I was alternating between an electric scooter and two forearm crutches in order to get around, depending on the distance that needed to be traversed. Over time I found myself using the scooter more and more and the crutches less and less. I realized that I was using a part time device, the scooter, in a full time capacity. A power wheelchair is much better suited for full time occupation. I know this, because my mother spent the last 39 years of her life in a power wheelchair.

So I began researching my options. Eventually I stumbled on the most amazing wheelchair- the iBOT 4000. I contacted Independence Technology, the manufacturer, and they brought a model to my house for a test drive. After the test drive I told my wife, with certainty, that I would somehow own one of these. The list price was about the same as a new car. Independence Technology, my primary care physician, and my neurologist all helped me petition my insurance company. The insurance company agreed to pay for exactly zero percent of the cost of the chair. It was deemed "not medically necessary". Heck, they wouldn’t even cough up the amount that they would have paid toward a traditional power wheelchair. Since there was no stopping me on this one, in July of 2008 my family and I pulled together the money and I bought the thing.

So what’s the big deal about the iBOT 4000? The iBOT is a wheelchair developed by Dean Kamen, the same gentleman who developed the Segway Personal Transporter, the first wearable infusion pump, and a bajillion other items that help improve people's lives. The iBOT has four operating modes. In standard mode the chair looks and acts like any other rear wheel drive wheelchair. This is the mode I use at home.

In 4-wheel drive mode the chair can navigate rough, uneven terrain. I have excellent traction on ice and snow, as well is in the rain. I can hike with my wife on many of the scenic trails along the coast of Maine, and I can go to the beach. In this mode I can actually climb up and down sidewalk curbs if there are no curb cuts where I want them to be.

In balance mode the chair operates on only two wheels, maintaining my balance while simultaneously raising me up to standing height (but still in a sitting posture). This mode is depicted in the image at the top of this posting. I can move about in balance mode, or stand perfectly still. My height is adjustable so that I can see eye to eye with people between 5'4" tall and 6’ tall. When I'm in this mode out in public people can't help but stop me and ask me how the heck I am doing this. I give a variety of answers ranging from “seven on-board gyroscopes” to “magic” depending on my mood and who is asking.

The fourth mode is the stair climbing mode, depicted below. Yes I can climb stairs- up and down. If the stairs have a solid railing I accomplish the climbing by myself. If the stairs do not have a railing then my wife is trained to assist me. How many stairs, you ask? I can climb stairs until the batteries go dead or the cows come home, whichever happens first.


I've taken the iBOT with me on business trips at least a half dozen times in the year that I've owned it. The chair folds up nicely and stows away with the checked luggage on a plane. I've gone to beaches and parks, private homes, my daughter’s upstairs apartment, and old inaccessible restaurants. I use the chair all day, every day. It does everything it's advertised to do and a little more. It's a miraculous device.

This is my first wheelchair. I've never owned a traditional chair. If the iBOT ever becomes unavailable to me, that loss will have a negative impact on my lifestyle. It would represent a significant step backwards in terms of my personal accessibility to the world around me.