Wednesday, July 29, 2009

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 The iBOT breaks the mold, but the insurance companies continue to evaluate it with outdated metrics.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.

Wednesday, July 22, 2009

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.

Let's Get this Party Started

My legs are pretty much shot. My left hand is rapidly losing its dexterity and strength, and my right hand is starting down that road. My arms are still somewhat strong, but are getting weaker all the time. I can’t participate in many of the recreational or social activities that I used to. I can’t perform many of the basic functions that a person needs to perform to get through the day. I can’t even work for a living. I take a bunch of prescription drugs, sometimes of the experimental variety, because there is no know cure or even effective treatment for Primary Progressive Multiple Sclerosis.

The above litany is not a complete list of my MS symptoms. I've got more, but I'll spare you the complete accounting. My point being- if I don't mention it, don't assume I'm not experiencing it.

Bad luck, huh? Life is unfair, right? It must suck to be confined to a wheelchair. You might think that this would be so, but for me it is largely not the case. I have good days and bad days, but no more so than the average 45 year old man. I’m not happy that I have MS, but I am happy. I spend almost no time lamenting over what could have been, or regretting my misfortune. Because I enjoy my life as much as I ever did, despite its challenges, am I crazy, in denial, or am I on to something? I started this blog in part to explore those types of questions.

I believe that an individual's level of happiness is largely self determined. However, to be practical about it, we are also influenced by our own inherent personality traits and by our interactions with the world around us. Here are a few things that I have working in my favor- traits and experiences that just make it a little easier for me to live a contented life:
  • Good internal wiring. I have a favorable genetic makeup for dealing with situations like this. Thanks Mom and Dad.
  • I have an incredible support system. It starts with my wife, and includes other family, friends, and medical professionals. My support system also includes my online MS friends, almost none of whom I’ve actually met face to face.
  • I watched and learned as my mother endured similar challenges with incredible grace and courage. Her disability was due to a sudden accident when she was 35 years old and I was only 5. Her spinal cord injury was in her cervical spine. My primary lesion load (area of disease activity) is in my cervical spine, in almost the exact same location as my mother’s injury. The longer I battle this disease the more my symptoms resemble hers. I know. It’s freaky.
  • I have some level of financial stability. I'm not wealthy, but I might not be so happy if I was cold or wet, or worried about where my next meal would come from.
  • Although I'm often fatigued, I am not in much pain, and I rarely feel "sick".
  • I have widely varied interests. When I can no longer enjoy one activity, there is another activity on my list that I can take up (i.e., blogging).
  • I have the ability to enjoy sedentary pursuits. If this had happened to my hyperactive wife, for example, it would have been a significantly greater challenge.
I readily admit that I have a lot of things going for me that many disabled folks don’t have, evidenced by the list above. So I’m not here to say that I have a formula that every disabled person can follow to achieve true happiness. In fact I can't say with certainty that I'd still have this positive attitude under any circumstances. I'm just here to get the conversation going.

The reason I am blogging now, and never have blogged before now, is that as of May, 2009 I have lots of time on my hands and need something fun, interesting, and useful to help fill my day. After 8 years of getting up and going to work with MS, it finally got to the point where I could no longer do my job. If you have not read the About Me section on the right hand sidebar yet, please take a minute to do so.

Here are some desirable potential outcomes of this blogging adventure, in no particular order:

  1. I will connect in a variety of ways with people who I don't currently know.
  2. This blog will stimulate some interesting conversations on a variety of disability related topics.
  3. This blog will have any sort of positive impact on some of the folks who visit it.
  4. I will leave a legacy of writing that will outlive me, so that my descendants will understand what life was like for their disabled ancestor.
  5. The process of maintaining the blog will be in some way therapeutic for me.
  6. I will come to understand myself better.
  7. Those who know and/or love me will come to understand me better.
  8. I will advocate for the disabled community: raise awareness, articulate our plight, help facilitate change
  9. Some media giant will buy my blog and I will get rich. Ha, that is rich.
Here is one undesirable potential outcome of this blogging adventure:
  1. In the process of organizing, acknowledging, and posting my thoughts here, I will come to my senses and realize I’m completely screwed, and change the name of this blog from “Enjoying the Ride” to “Life Sucks- Why Bother?”.
Let’s just get this party started and see where it takes us. Thanks for visiting. My hope is that this blog will be more of a conversation than a presentation, so please feel free to use the "comments" option at the bottom of each posting to give feedback. Also, please feel free to share the link with anyone who you think might be interested.