In the top right hand corner of the page...enjoy.
Or watch it here.
Friday, August 28, 2009
Saturday, August 22, 2009
An Easy Way for People with MS to Get Involved (healthy readers may just want to skip over this one)
From the NARCOMS website:
“The purpose of the Registry is to speed the development of new therapies and healthcare services by facilitating research in these areas and reducing the time and cost of research studies. Individuals with Multiple Sclerosis are invited to enroll in the Registry through direct mailings, MS centers, support groups, and the NARCOMS Registry webpage. Enrollment involves filling out a questionnaire and mailing it or submitting it online to the Registry Administration Office. Participants are assured that strict confidentiality will be maintained and that their names will not be given to anyone without their permission. The questions asked are regarding demographic information, MS-related medical history, immunologic and symptomatic therapies, health care services used, and a series of patient-assessed performance scales that reflect disability in eight domains of function.
Benefits of Participation
· You are helping to provide the information needed to learn about the variations of MS in a very large group of patients and to monitor the progression of the disease
· You help us monitor the effects of various treatments. Your information may be providing ideas for future research
· You will be receiving the printed version of the MSQR free of charge (note from Mitch: this is an outstanding publication)
· You will be informed of recent studies and their results
· You will be notified of clinical trials in which you may be eligible to participate”Click here to sign up.
Sunday, August 16, 2009
How to Interact with a Disabled Person: 101
I am overwhelmed by how helpful and pleasant most people are when they encounter me in public. Just last week I was zipping through a crowd of people rather quickly in my power wheelchair . My friend remarked, “you could hurt somebody the way you drive.” She was right. “But,” I rationalized, “even if I run over an innocent bystander and knock him to the floor, once he realizes it was a wheelchair guy that did it, he’d probably just dust himself off and apologize to me.”
Even though people are generally very considerate, I thought it might be helpful for me to provide some pointers about interacting with disabled people when you meet them in public (or at least if the disabled person you meet is me):
cripple disabled person!
I invite readers to leave their horror stories, pet peeves, and general feedback in the comments section.
Even though people are generally very considerate, I thought it might be helpful for me to provide some pointers about interacting with disabled people when you meet them in public (or at least if the disabled person you meet is me):
- If you've read my earlier posts you know that I have a high-tech wheelchair. If you'd like to know how it works, and I'm not in a big hurry for some reason, I'll probably tell you everything I know about it. However, I would appreciate it if you don't cause a scene. Please don't yell out in the middle of a busy shopping mall, "Earl! Earl! Get over here! You've got to see this! This chair is the freakiest thing I’ve ever seen!" This really happened to me last week.
- If you are so inclined, feel free to offer me assistance with tasks. However, if I say "that's okay, I have the door" then please don't open the door for me anyway and just get in my way and turn what was going to be a slick maneuver into a pileup in the doorway. In many situations I wholeheartedly welcome offers of assistance like this. So please don't take the other extreme and assume that any offer of assistance will be considered some sort of insult. My advice is to offer assistance if it feels right, but be prepared to step away if your offer is kindly refused.
- Personally, I find it okay if you ask me "why are you in a wheelchair?" It gives me a chance to advocate for my favorite disease. I want everyone to know what MS is, what it can do to an otherwise healthy person, and that folks with MS are normal people trapped inside a failing body. MS is a disease, but it is also a cause, and I am always looking for opportunities to talk about my cause. I doubt that all disabled folks welcome this question as freely as I do though, so proceed with caution.
- On a related note, unless we are close friends please resist the urge to give me advice on how I can be fixed. Most of the time a person is in a wheelchair because of serious injury or illness. However, I don't know how many people have, upon learning that I have MS, blurted out the fact that they know the cure for MS because of a friend or relative’s experience, and here it is! In contrast, an acceptable conversation starter would be, “did you see the news story about Treatment X, which is supposed to help MS?” Maybe I didn’t see it, and thank you for bringing it up. I have no doubt that your heart is in the right place, but remember that there is a 99% chance that I know way more than you do about why I am broken, and what I can and cannot do about it. I’ve spent hundreds of hours studying this.
- Do kindly step out of my way if I am attempting to navigate through a crowded room. Again, do not go overboard and draw unnecessary attention to me by shouting at the top of your lungs, “Make way! Wheelchair coming through!” or similar. I am hereby publicly apologizing for all the toes I already have, or may in the future, run over.
- Most disabled folks welcome the sentiments of concern, respect, and appreciation for what we are going through, but deplore the sentiment of pity. “I don’t know if I would be handling this situation as well as you are,” is OK. “Keep fighting the good fight,” is acceptable. "You poor thing. I feel so bad for you," is not good.
- Please don’t talk over my head to the person that is with me, as if I am a child who cannot understand you. I know you don’t do this on purpose, but it is really annoying.
- When you are in a conversation with a group of people, please try not to stand in front of me, blocking my line of sight to the rest of the group. Try to open up the group into a circle so I can see everyone, and they can see me.
- A couple of months ago I was preparing to leave a restaurant, and sat before the exit trying to determine the best strategy for getting through those big heavy doors. Sure enough two young men zigzagged around me and barreled out of the restaurant without even asking if I could use some help with the doors. If you see a disabled person pausing in front of a door, then there's a good chance that they would appreciate somebody holding the door open for them. After the doors slammed behind the two young men I threw my arms out in disgust, a pure reaction, and a waitress saw me and opened the doors for me. I was a little embarrassed that I had reacted in that demonstrative way. I don't feel "entitled" to help from everyone who comes along, but the situation just struck a chord with me.
- Finally, if your small child points at me and says things that would be inappropriate for an adult to say, please don’t be embarrassed. They can’t help themselves. I generally find that if I give them a big ol’ smile I’ll get one right back.
I invite readers to leave their horror stories, pet peeves, and general feedback in the comments section.
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.
http://www.ibotnow.com/home.html
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
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.
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:
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:
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.
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:
- I will connect in a variety of ways with people who I don't currently know.
- This blog will stimulate some interesting conversations on a variety of disability related topics.
- This blog will have any sort of positive impact on some of the folks who visit it.
- 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.
- The process of maintaining the blog will be in some way therapeutic for me.
- I will come to understand myself better.
- Those who know and/or love me will come to understand me better.
- I will advocate for the disabled community: raise awareness, articulate our plight, help facilitate change
- Some media giant will buy my blog and I will get rich. Ha, that is rich.
- 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?”.
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