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.

Bonus Time

My friend Keith ruptured his aorta a few years ago. The bleeding was slow enough and the medical attention he received was timely enough that he survived, despite the odds. If not for outstanding doctors, strength of will (his and his wife’s), and good fortune, we would've said goodbye to Keith years ago.

My mother-in-law was diagnosed with breast cancer about five years ago. It was a large tumor and she was given a 50-50 chance of survival. It could've gone either way. But due to her indomitable spirit, the support of her loving husband, and modern medical technology, Carole is still with us.

Congresswoman Gabrielle Giffords was shot in her head (in her freaking head!), point blank, by a deranged assassin. Yet she not only survived, but is growing stronger each day.

Keith, Carole, and Gabby are all living on bonus time.

It is heartwarming to learn about people who have cheated death. The heroes of these stories have each acquired a renewed appreciation for life, having come so close to losing it. In some sense don't we envy these folks? Don't we almost wish for our own near-death experience, so that we could stop taking life for granted, so that we would have legitimate grounds to cherish each and every day?

I'm here to say that we can all breathe this rare air without battling cardiac failure, overcoming cancer, or surviving a shot to the head. If you think about it, each of us is already operating on bonus time. Here’s what I mean.

First, every single one of our direct ancestors had to successfully survive their own birth, avoid childhood diseases and maladies, live to childbearing age, mate and produce an offspring before dying of disease, starvation, war, or attack by sabertooth tiger. And except for the last 50 or 100 years, all of our ancestors did this without the benefit of sterile operating rooms, Facebook, or Prozac. Consider the odds that each of our family lines has overcome, generation after generation, to win this tournament of life. Although we may not have cheated death as palpably as Keith, Carole, or Gabby, we have cheated nonexistence by a considerable margin.

Second, think about all of the people that could have been born instead of you, but never were. What if your parents had not met one another, but had fallen in love with (or at least had sex with) somebody else instead? The person that is you, with your unique genome, would never have been born. What if your mother, or her mother, or her mother, had come down with a headache (real or imagined) and hadn't been in the mood to procreate at the very second that she did. Because so much of who we are is the result of the random merging of genes from each parent at the split second of conception, if this moment had been delayed at all then some other child with different hair, a different personality, and maybe even a different gender would've been born instead of you. In the sense that you exist and all these other potential people don’t, you have been profoundly fortunate. Congratulations.

Third, think about all the close calls that you've survived, the first of which was your own traumatic and risky childbirth. Then think about how many times you’ve stumbled but caught yourself; how many times you almost crossed the street but at the last minute noticed a speeding car out of the corner of your eye; or on how many occasions you overcame any number of teenage and early adulthood risky decisions involving alcohol, drugs, and other dangerous behaviors. Frankly, thinking back, I'm amazed that I've eluded death for as long as I have.

By simply being alive enough to read this blog post you've overcome greater challenges than heart disease, cancer, or gunshot wounds to the head. You shouldn't be here. No one of us, by any statistical analysis, should be here at all. But we are. There is no need to wait for your own story of extraordinary survival. It’s already been written. 

Give yourself permission to embrace that same zest for life that Keith, Carole, and Gabby already have. Stop sweating the small stuff. Stop giving a damn what everybody thinks about you. Most importantly, stop putting off your dreams for another day. Start living them today, because the splendid adventure that is your life is a gift that so many other potential people never got the chance to experience. If nothing else, don't we owe it to them to make the most of our good fortune, to live life to the fullest?

And the size of the dream is not important- climbing all the great peaks in North America or trying to be a more considerate spouse. It doesn't matter. The same principle applies.

When you wake up each day, take stock of how incredibly fortunate you are to be here at all, remind yourself that you're already operating on bonus time, and then act accordingly.

Incidentally, reasons one, two, and three, above (the reasons why each of us are already operating on bonus time), are also appropriate responses to grumblings like “life is unfair,” and “nothing good ever happens to me,” and “what do I have to be thankful for?”

For a humorous and touching story of survival and renewed appreciation for life, watch this video clip.
 

I Surrender

(Photo credit: Wikipedia)

“I may not have gone where I intended to go, but I think I have ended up where I needed to be.” - Douglas Adams

I've reached (achieved?) several major milestones in my disease progression, such as:

• diagnosis
• informing my loved ones
• starting and stopping various treatments
• using a mobility aid (cane) in public for the first time
• installing hand controls for driving
• buying my first wheelchair (iBot)
• leaving the workforce
• qualifying for disability benefits

and now…

• surrendering my driver’s license

If you are a regular reader of this blog, you know that I saw this coming from a mile away. I’ve predicted several times that my left hand weakness would soon prevent me from operating my hand controls. But in the end, it wasn't only my left hand. It was the convergence of three separate impairments that did me in.

First, as expected, my withering left hand was having difficulty operating the brake and gas lever of my hand controls. I was increasingly compensating for my weakness in a couple of ways. I would habitually overuse the cruise control function, so as to rest my left arm more often. Also, I would routinely place the vehicle in park when I was waiting at a red light, again, to rest my left arm. I had learned to ignore the protesting horn toots I heard if I was too slow getting off the starting line on green lights.

Second, I needed to be able to transfer from my wheelchair to the driver’s seat. I am aware that some disabled drivers operate their vehicles directly from their wheelchairs, but I didn't want to do that. In February of this year it was becoming nearly impossible for me to transfer from my wheelchair to the standard driver’s seat, so I invested part of my tax refund in a power adjustable driver's seat, which made the transfer easier. In the last couple of months, though, my transfers were becoming problematic again, even with the power adjustable seat. This expensive adaptation only bought me eight additional months of driving.

The third challenge was one that I had not mentioned here before, and that I wasn't even aware of until the last month or so. I used my right hand and arm to operate the steering wheel, by gripping something fondly referred to as a suicide knob. Of late, however, it had become increasingly difficult for me to make 90° turns as required at intersections, because of weakness in my right arm and hand. On my last couple of drives I even found myself briefly letting go of the gas lever with my left hand to assist my right hand in turning the steering wheel at intersections. This caused me to unexpectedly decelerate when negotiating certain right and left hand turns – sometimes at busy intersections. It would only have been a matter of time before somebody rear-ended me.

I'm aware that there are more extraordinary driving accommodations that I could still employ. For example, I know that I could drive using a joystick-like device. If my disability was stable- if I wasn't constantly getting worse- then incorporating these adaptations might make sense. But enough is enough. It's time to let it go.

So it was the confluence of these three factors that led me to the decision that I'd been dreading for months, maybe even years. However, because of changes that we've made in our lifestyle, most notably because of relocating to a very walkable neighborhood, this loss may not be as bad as I had once feared. The experience might be less than traumatic.

Why am I not more distraught? Have I compensated that well or am I simply becoming proficient at coping with loss? Probably a little of both.

This long anticipated day is finally behind me, and I didn't injure or kill anyone in the process. I didn't even have a fender-bender the entire 6½ years that I drove with my hands. I'm comfortable that I gave up driving neither prematurely nor belatedly. (Even if I did, would I admit it?)

There are several public transportation options available to me from my new house. I'm going to start trying them out. Rest assured that I'll report back here regarding the experience.

So how do I feel about this loss? I’m experiencing several emotions, but chief among them is simply relief.

There. Done. Moving on.

My Disability Status

(Photo credit: Wikipedia)

In the United States there is a progression of steps that one must go through to fully transition from a healthy worker to a disabled non-worker with benefits. In my case I was fortunate enough to have private disability insurance through my employer in addition to government disability insurance (Social Security).

In May of 2009 I stopped working and began the process of applying for both of these programs. Despite the horror stories I had heard, I qualified without difficulty. That was a mixed blessing. I certainly dreaded an ugly appeals process and maybe even being required to return to the workforce with my tail between my legs. But getting so easily approved was confirmation that I was, well, a hurting unit. That was the mixed blessing part. I wrote about my initial disability approvals here.

My private disability insurance is two-tiered. For the initial 2.5 year period I only needed to establish that I could no longer perform my current occupation. After the 2.5 year period, which ends this month, I would be required to meet a higher standard. I needed to prove that I could no longer perform any occupation for which I was qualified. This summer, well ahead of the deadline, my private disability insurance company buried me with a mountain of paperwork that my doctors and I needed to dig out from underneath.

We completed our documents, sent them in, crossed our fingers, and held our breath. A few short weeks later, we get the "good news" that I am so disabled that I can't perform any occupation. As such, the insurance company is going to provide me with a monthly stipend until I'm 65 years old. Unless I get better, which is almost certainly not going to happen, this portion of my income will be the status quo for the next 17 years.

The other milestone that occurred 2.5 years after my last day of work, rounded off to November 1 of this year, is that I now qualify for Medicare, which is the public sector insurance most closely associated with elderly people in the United States, but also available to disabled people. So now I have low-cost medical insurance through the federal government. Not bad.

In terms of coverage, Medicare is very similar what I've always had through my employer, with one exception. My old insurance would only pay $3000 toward a power wheelchair, which is a ridiculously small amount. Therefore, my inside-the-home wheelchair, as opposed to my iBot which is primarily my outside-of-the-home wheelchair, is a very basic unit without many of the features that full-time wheelchair users should have. Now, with Medicare, I can own a power wheelchair that will in fact meet the needs of someone who spends 16 hours a day, seven days a week in a seated position. I just began that approval process, and I'm expecting a shiny, new wheelchair for Christmas (give or take a couple of weeks).

There is one disconcerting aspect of Medicare that I'd like to address here. As I explained above, there is a waiting period of 2.5 years after you stop working due to disability until Medicare kicks in. That was an inconvenience for me, but I was able to bridge the gap because Kim has private, family medical insurance available to us through her employer.

However, what if I had been the sole employed member of our family? What if Kim was a stay-at-home mom? What would we have done? This 2.5 year waiting period is something that I just cannot get my arms around. If someone goes on disability, it is almost certainly because they have a severe medical condition that requires significant, urgent, and expensive care. Yet, if the individual is no longer employed, which he isn't if he is going on disability, then he has no affordable, private medical insurance and he has no public medical insurance. This is just crazy!

I have a friend, let's call her Jill, who has progressive MS and is the only member of her family with medical insurance available through her employer. By all rights she should no longer be working. Continued employment can't be good for her advanced MS. Yet she feels she has no choice, because if she goes on disability then there will be no medical insurance for herself for 2.5 years, and no medical insurance at all for her husband and children. This is just crazy!

Now that I have my permanent, private disability insurance approved, and now that I have Social Security income and Medicare, my situation appears stable until I reach age 65. At that point I will lose my private disability insurance, but Social Security and Medicare will stay with me until I die, hopefully at a ripe old age, and hopefully cured of MS (ha, ha, good one Mitch).

I may be overly optimistic. Given the budget cuts that are being considered by our federal and state governments, I could very well see my public sector benefits erode over time. But I have a suggestion. Let's find ways to balance our budgets that don't further disadvantage the most vulnerable members of our society. Wouldn't that be nice?

My Withering Left Hand

When I started down this path 11 years ago, I knew nothing about MS. I didn't know anyone who had it. I didn't know how it could affect a person. Now, unfortunately, I’m a bit of an expert.

MS manifests itself differently in each person, but for me it has been a left-to-right and a bottom-to-top disease. Problems started in my left side and moved to my right side over time. Problems started in my legs and moved up over time. About three years ago, when both legs had become nearly useless, my upper body started to show the effects of the disease. Now my legs are dead weight, and the left/right game is being played out above the waist. My left hand is severely disabled, and although my right hand is far from healthy, it's hanging in there.

Given that I'm right-handed, I feel fortunate that this will be the last man standing, so to speak. Of course nobody asked me 10 years ago, but if they had I would've preferred that my right hand be the final appendage voted off the island.

So what's going on with my left hand? It functions kind of like a pair of pliers – a very weak pair of pliers. For example, I can't grab a bottle of beer and drink it with my left hand, but I can pry my fingers apart, plop a bottle of beer in my lap, and keep it in place for a few minutes with my left hand. Now that's useful!

I can't use my left hand to help me open bags or bottles or cans or boxes. Those become single-handed tasks. It’s of no use to me for washing or grooming. I don't use my left hand at the dinner table. It lies passive at my side. I'm able to make some use of my left hand for helping me to zip up a jacket. I can sometimes grip the bottom of my coat just enough to hold it down as I use my right hand to pull up the zipper. But I fear that this ability is short-lived.

Luckily my left hand is securely connected to my left arm. Although I can't lift my arms above my head, for tasks below my neck my arms are still relatively strong. I can enlist my arms to raise my body enough to transfer from wheelchair to bed, wheelchair to wheelchair, or wheelchair to toilet, for example. When I do this, I again make use of my left hand like a weak pair of pliers. If my left hand can grasp something it tends to anchor my arm enough so that I can accomplish the transfer.

I use a standard, no frills, power wheelchair in the house. It's more maneuverable than my iBot, and this allows me to save miles on my iBot and hours on its batteries. This chair only requires that my left hand can wiggle the joystick ever so slightly, and I'm still able to do that. Controlling my wheelchair with my left hand is preferable, so that my relatively capable right hand is available for all other tasks. The operation of my iBot, however, requires more hand dexterity and strength, because of all the buttons and knobs that I must manipulate in order to take advantage of the various modes of operation. Almost a year ago I relented and moved my iBot controller from the left side to the right side. Because my good hand is otherwise occupied, there’s no zipping down the sidewalk while enjoying an ice cream cone in my iBot.

This is all well and good, but the horrible part about MS is not so much what it has already done to you, but what it might still do. I look at my left hand and I know I'm seeing the future of my right hand. Despite the fact that I have a loving support system, adequate financial resources, and a resilient (if not sunny) disposition, and even though I won’t be the first person to ever face such hardship, it’s shit like this that keeps me awake at night.