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.
Why the iBot is Spending the Night in the Garage
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.
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.