It’s Not the Disability, It’s the…

(Photo credit: Wikipedia)

I’ve accepted that I can no longer walk, and I’ve adjusted to the constant fatigue and the failing memory. Kim and I have developed strategies for all sorts of activities of daily living, so that I can be showered, shaved, dressed, etc. Everything this damn disease has thrown at us so far we’ve handled, and pretty well if I do say so myself.

What wears on me, however, is this gradual, pervasive disease progression. Once or twice I’ve been able to temporarily slow it down, but it always comes back. Of course I’d like to reverse the path of this illness and actually get better. But that’s not necessary for me to enjoy a fulfilling and relatively stress-free life. If my condition would just stop deteriorating, I’d be perfectly content to live the rest of my life with my current level of disability, or even some greater level. But that deal is not on the table.

It’s this damn worsening disability, this insidious wasting away that threatens to shake my resolve. Whatever I do, it’s never enough. MS cannot be placated. It demands so much of me, and then it demands more.

You often hear, “It’s not the heat, it’s the humidity.”

I say, “It’s not the disability, it’s the progression.”

What Do I Do All Day? I Obsess over Our Finances

(Photo credit: Tax Credits)

This is the eighth in a series of posts about how a disabled person like me passes the time at home, now that I no longer work.

To say that I obsess over our finances may be too harsh. I’ll describe what it is I do, and you can decide what to call it.

My primary tool for managing our finances is a program called Quicken. I have 18 separate accounts in Quicken, including: savings, checking, cash, PayPal, various credit cards, mortgage, auto loan, etc. I periodically reconcile these accounts against statements from the various financial institutions. I don’t dread this activity. In fact it often leaves me with a warm, fuzzy feeling on the inside. The spending and income within those accounts is broken into approximately 80 categories like: Kim salary, automobile repairs, clothes, groceries, natural gas, Zach tuition, retirement plan contributions, federal taxes, etc.

Okay, obsess is beginning to feel more and more appropriate. But I’m just getting started.

I track additional aspects of our loans and investments, and our gas and electricity usage separately in Excel spreadsheets. Sometimes Quicken just doesn’t give me the level of detail that I desire (after all, I need to justify that MBA I spent years of night school completing).

I pay all of our bills electronically, using a variety of methods. In recent years I finally succeeded in ditching the traditional checkbook. That’s a good thing, since I am unable to write with a pen anymore, other than scribbling my name illegibly on the signature line.

In recent months I’ve had the pleasure of helping Amy manage her student loans, which will enter repayment status soon. I’ve offered to furnish her with her own copy of Quicken, but so far she hasn’t shown an interest.

Once a year, about this time, I also compile something I call “The Sturgeon Family Annual Report.” In this document I summarize income, spending, cash flow, insurance, loans, net worth, and more. Why do I do this? First, I can’t imagine how any family could keep its financial house in order without a periodic look at the big picture. Second, this report becomes available for Kim’s information if I should die, or for our kids information if we should both die. Third, it’s just great fun.

Fun? Sure. For example, because of this analysis I know exactly how much money we spent at our local pub, The Snow Squall, last year (only $979, it was an off year), or at Trader Joe’s ($551). Because of my obsession, I also know how much we spent on clothes ($1,359) and veterinary bills ($1,116).

I rely heavily upon this information whenever we face important financial decisions. However, I don’t use this data to manage or control our day-to-day spending. I don’t develop or attempt to enforce household budgets. We are both frugal by nature, Kim more than I, and so I don’t need to do much along those lines. I’m like Jane Goodall studying the great apes. I find our behaviors fascinating, but I only observe. I rarely engage.

Here are my other posts in this series:
      
1. I Watch (mostly) Quality Television 
2. I Digitize and Archive Family Photos and Videos 
3. I Read Books 
4. I Attend Courses at Top Universities (sort of) 
5. I Nap
6. I Blog
7. I Read Other People's Blogs

10 Things I Have Come to Understand in My 50 Years

(Photo credit: hfabulous)

I’ve learned so many lessons in my first half-century. I suppose this is true of every 50-year-old, but only a few of us have blog space to fill up with such ponderings. So, in no particular order:

1. Even if I were to die tomorrow, I win.

To have been born at all completely defies the odds. That’s why ever since my birth I’ve been living on bonus time, and so have you (since your birth). This continued existence of ours- it’s just icing on the cake.

2. The fact that a belief is widely held does not make it a fact.

The earth is flat, 6000 years old, and is the center of the universe. Separation of church and state is wrong. Slavery is morally justified. Women should not vote. Separate but equal is a fair compromise. Tim Tebow may be unorthodox, but there will always be a place for him in the NFL.

3. Listening is more important than speaking.

I realize that this is in easy statement for an introvert to make (if any statement is easy for an introvert to make).

4. Having an open mind and being contemplative are assets, not liabilities.

For reasons I cannot understand, we apparently want our leaders to be opinionated and inflexible, and they must never flip-flop. At least that’s how we vote. In reality, the most thoughtful and effective leaders are the ones who are comfortable saying “I don’t know”, or “I’ll have to think about that” once in a while. My problem is, very few of those people show up on the ballot.

Thankfully, however, many of those people show up at my happy hour. So that’s something.

5. Similarly, most people think they know way more than they actually do about how the world works.

The human brain does not cope well with ambiguity. We therefore construct models in our heads of how the world works, creating the illusion of certainty and predictability. We feel compelled to bridge our knowledge gaps with reasonable assumptions, best guesses, and large helpings of complete bullshit. In most instances the knowledge gaps would be best left unbridged. The fallacies that result from these errant models are at the root of most conflicts in our society.

It is a sign of great intelligence to acknowledge one’s ignorance (if I’m not mistaken).

6. There is a fine line between confidence and arrogance.

The first one is appealing and represents a strength. The second one is ugly, and represents a weakness. I admire people with confidence, something that I often lack. I do everything I can to avoid arrogant people. Yet, I sometimes confuse one for the other. It takes careful observation and a certain amount of patience to be sure which one you’re dealing with.

7. We need each other.

We are social animals. Other than the occasional, functional hermit, every human being relies on a network of other human beings. The people who are most successful and happy in life are not so stubborn as to underutilize their network or so shortsighted and uncaring as to mistreat it. They cultivate their relationships, and realize mutual benefit.

People who spend an inordinate amount of time at home, such as disabled folks, often benefit from an online network too. But this can’t replace the need for face-to-face, in-person relationships.

I could to do a better job cultivating both of my networks.

8. “You make your own luck” applies primarily to the lucky.

It’s comforting to think of the world as a meritocracy – you get what you deserve. This idea is primarily espoused by two groups. First, there are those who have been the beneficiary of good fortune themselves. Second, there are those who hold on to the notion that there is a scorekeeper somewhere, doling out appropriate rewards and punishments despite the overwhelming evidence that bad things keep happening to good people and good things keep happening to bad people.

I accept the idea that a lack of effort lowers one’s chances of becoming prosperous, and that expending effort raises one’s chances. I certainly appreciate the importance of hard work and accountability (ask my kids). But I cannot accept the notion that people necessarily deserve their lot in life.

Admitting that our successes and failures are largely due to one form of luck or another allows us to have empathy for the less fortunate, and discourages us from idolizing the more fortunate.

9. We are stronger than we think.

Resilience is an almost universal human trait. People often don’t appreciate their strength until circumstances demand it. I’ve seen this time and again. I’ve lived this.

You will eventually discover how much you can endure and all that you are capable of accomplishing, if you haven’t already.

10. Things are generally not as bad as they appear to be.

“The reason people find it so hard to be happy is that they always see the past better than it was, the present worse than it is, and the future less resolved than it will be.” Marcel Pagnol

These are wise words to live by. But eventually things are as bad as they appear to be, and we die. Even then, see item 1, above.

Life Is a Little Better This Week

(Photo credit: Wikipedia)

On the whole, things get more difficult over time with progressive MS. But once in a while we stumble upon a new device, or a new procedure, which at least temporarily makes things better. That’s what happened this week.

Here’s some background. For many years, I have had to pee once or (occasionally) twice in the middle of the night. That was no big deal, until my legs stopped working. At first I would use whatever mobility devices I needed in order to help me get from the bed to the toilet.

A few years ago, instead of dragging my sorry ass all the way to the bathroom, I began to sit up on the side of the bed and empty my bladder into a hard plastic, portable urinal. I would then swing my feet back up into the bed, and fall asleep. In the morning, I would empty the urinal into the toilet. That was so much easier, and it made my life better. But it didn’t last.

Eventually I began to lose the ability to swing my feet back up into bed without some assistance. This meant that every time I emptied my bladder in the middle of the night, I had to wake up Kim so that she could lift my feet back up into the bed. This was our standard procedure from about 12 months ago until about 6 months ago. Then, it also became difficult for me to execute the first portion of this maneuver, getting my feet off the bed and sitting up without assistance. I would have to wake Kim to help me both before and after I emptied my bladder. Between her two tasks, she would sometimes use the bathroom herself. Other times she would crawl back into bed for a short time. Once in a while she would just stand there and stare at me, silently inferring, “Hurry up. It’s the middle of the night, you know.”

I worried about how I would manage if Kim wasn’t next to me some night. But more importantly, and more urgently, I worried about her ability to get a good night’s sleep. Once she expended the physical effort associated with helping me, Kim’s sleep pattern was significantly interrupted. She felt tired the next day. I felt guilty.

I knew that some men were able to use a urinal while lying in bed. I just couldn’t figure it out. The biggest challenge was that water, or pee for that matter, runs only downhill, never uphill. So I obviously couldn’t empty my bladder into a urinal if I was lying flat on my back. If I rolled on my side I sunk down quite far in the mattress, so far in fact that if I stuck a hard plastic urinal against myself I was asking water to run uphill. I very much wanted to find a way to make it work, but I couldn’t, until last week.

Once a year or so I bring in my favorite occupational therapist, Maren, to help me figure out new and creative ways to accomplish everyday tasks after a year’s worth of disease progression. Last week was one of those times. We talked about a lot of things, and eventually the subject of nighttime urination came up. We tossed around a bunch of ideas, and that night I gave it a try, very much afraid that if I screwed up it could be messy.

By using a particular kind of soft, flexible urinal, and positioning my body only partially lying on my side, and elevating my upper body a certain amount using the hospital bed features that I have, it worked! Now, for the last week or so, I’m able to empty my bladder without getting out of bed or even sitting up on the side of the bed. That makes it easier for me to get back to sleep. More importantly, Kim is able to snooze right through my nocturnal activities, like she used to years ago.

I’m sorry for subjecting you to a discussion of bodily fluids. But this minor procedural change represents a meaningful improvement in our lives, leaving us happier, more well-rested, and more likely to be awesome each and every day.

Some What-If Scenarios

 (Photo credit: Wikipedia)

I see no benefit in wishing that things had turned out better. That’s a waste of time and an emotional drain. However, I do have an active, albeit MS-addled brain, and lots free time on my hands, and so my mind wanders. I find myself imagining, just for the fun of it, how things might play out under different circumstances. For example…

Question one: What if Kim had come down with MS instead of me?

This would have been a disaster. I am so much better suited to have MS than Kim is, and Kim is so much better suited to be a caregiver than I am. Don’t get me wrong, Kim is a tough cookie and would have found a way to cope with MS, had she contracted it. But she has no love for sedentary activities and has difficulty relaxing. In contrast, many of my interests are sedentary, and I’m quite adept at kicking back and taking it easy. Furthermore, Kim is a natural caregiver – it’s in her DNA. I think I would have been an adequate caregiver, but I don’t possess her rare combination of empathy and energy.

It’s best for each of us, and for our marriage, that it worked out the way it did.

Now let’s ramp the discussion up a notch to another subject I allow my mind to ponder at times. Warning – some of you may consider this second scenario borderline morbid, in which case I advise you to stop reading here (I’m talking to you, Carole).

Question two: Imagine if Kim and I were the last two people on a sinking ship. There’s only room on the rescue helicopter for one more of us, and the other will certainly drown. Who should be saved?

I would insist that Kim go on the helicopter. She, being the empathetic person that she is, would insist that I go. Many people in committed, loving relationships would behave similarly. So, although these would be noble gestures on our parts, they would not be particularly unusual for the circumstances. But I would have reason and logic on my side, instead of merely love, duty, and compassion.

Here’s what I mean. If Kim were to live and I were to die, yes she would be left without the love of her life. But she would most likely enjoy a long, active, independent, healthy life, and one freed from the burden of caring for her devilishly handsome, but significantly disabled husband. She would almost certainly remarry, probably to a doctor, lawyer, or wine sommelier. However, if I were to live and Kim were to die, I would be left without the love of my life and without my primary caregiver. I would likely endure a shorter, more difficult life than Kim would, and I would (will) suffer one health problem after another. I would be completely dependent on paid caregivers who may or may not treat me with the TLC that Kim does and would not necessarily have sex with me. It’s conceivable that I could remarry, but I wouldn’t be exactly the most eligible widower in town, iBot wheelchair or not.

I’m not being heroic or romantic here. I’m being practical. Therefore, Kim, I don’t want to hear any argument from you in the unlikely event that we find ourselves in a sinking boat scenario. I’ve already stated my position clearly; now get your ass in that helicopter!

Two clarifications:

First, I’m not saying I wouldn’t want to live if Kim were to die. I would find a way to marshal on. It just wouldn’t be pretty.

Second, I am by no means implying that my life is not worthy, that Kim would be better off without me, or that the lives of disabled people are less valuable than the lives of healthy people. I’m only making an assessment based on the scenario presented and an honest appraisal of our probable futures.

Readers, do your minds ever wander in this way, or is it just me?

Losses and Gains 2013

It’s that time of the year again. Each January I take a moment to assess what I’ve gained and lost in the past year, and what changes may await me in the coming year. As you know, I try to strike a balance. I don’t sugarcoat my condition, but neither do I wallow in self-pity.

This is the third consecutive year I’ve conducted this self-appraisal and blogged about it here. Mine should by no means be considered a typical disease progression. With MS, there is no such thing as typical. Each person’s experience is unique, but at least now you’re intimately familiar with one person’s narrative. If you’re so inclined, feel free to review my 2011 and 2012 assessments.

Remember, with Primary Progressive MS the losses are not transient, but are permanent, barring any unforeseen advances in medical technology.

So, how did 2013 treat me? Unfortunately, the temporary reprieve I enjoyed in 2012, which I credited to intrathecal methotrexate treatments, didn’t last. In 2013 my disease progression resumed. Here are the highlights:

2013 Negatives

• More difficulty eating – not the swallowing part (although this is a problem for some people with MS) but the holding onto the utensils part and the getting the food from my plate to my mouth part.
• More difficulty transferring – wheelchair to bed and back, wheelchair to toilet and back, wheelchair to iBot and back
• More restless leg syndrome and spasticity, requiring increased pharmacological involvement. Note that these could be secondary effects – not so much direct symptoms of MS but rather of the result of sitting in a wheelchair all day. Either way, I wouldn’t have this problem without MS, so it makes the list.
• More difficulty with grooming tasks such as brushing my teeth, shaving, showering, etc.
• More difficulty with the keyboard and mouse

2013 Positives (I took the liberty of including nonmedical issues in this list)

• Insurance is paying for two physical therapy sessions per week, indefinitely.
• We purchased a new central air-conditioning system (heat sensitivity is a major issue for people with MS).
• Kim installed a new patio and outdoor fireplace in our backyard (grass is no friend of the wheelchair user).
• Enjoyed a vacation in Jamaica.
• Kim threw me an incredible 50th birthday party.
• Our teams won all of the Red Sox and Patriots games that we attended. Kim and I were present at Fenway Park when they won the World Series at home for the first time since 1918.
• I made several new friends (like Susan and Joe, for example).
• I had an article published in a magazine for the first time.
• My readership continued to grow at enjoyingtheride.com.
• Enjoyed a tour of DEKA Research and Development.
• Our daughter finished her Master’s degree (and moved back home until she finds that first “big girl” job).

2014 Potential Losses (if my disease progression continues these may be the things that I lose next)

• More of my personal grooming and self-feeding tasks
• The ability to transfer to and from my wheelchair, unassisted (the next step here is an overhead lift system – very expensive and cumbersome)
• A few things that I can’t even imagine (the devil I don’t know)

2014 Potential Gains

• Saving the iBot (March 31, 2014 is our “mobility cliff”)
• Still more new friends (despite my lack of social skills, they keep coming)
• More writing success at blog and elsewhere
• Stabilization of disease progression (unlikely, but possible)
• A few positives that I can’t even imagine
• Another year above ground- still preferable to the alternative, by far

I'll need to discuss with my neurologist whether or not to continue with intrathecal methotrexate treatments. I’ll let you know how that goes.

I appreciate that many of you are emotionally invested in my journey, and so I wish I had better medical news to report. Primary Progressive MS is a tough disease – not easily tamed. But life remains good, and I still have so much to be grateful for. I’m not happy about my disease progression, but I had no illusions that the plateau I enjoyed in 2012 would last. In fact, at this time last year I wrote:

“By no means am I assuming that my disease stabilization will continue, but it’s a bit like winning a sports championship – nobody can take it away from me. My 2012 MS Success trophy now sits prominently on my mantle, to the left of the trophy for Stuffed an Entire Peanut Butter Sandwich in My Mouth that I won in seventh grade, and to the right of the trophy for Made a Move on the Freshman Girl with the Nice Ass and Playful Personality that I won in tenth grade.

Nobody can ever take these accomplishments away from me.”

There is no 2013 MS Success trophy. But I meant what I wrote last year. I’m doing okay. Really.

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.

Memories: The Ghosts of Christmas Past

From time to time I will post Memories, where I describe some facet of my life before MS. I hope you enjoy these digressions.

Growing up, our Christmases were right out of Currier and Ives: cold and snowy weather, traditional holiday treats, family, gifts, mistletoe.  I remember those Decembers fondly and miss them terribly.

In grade school, on the last day before Christmas vacation, a local radio station would record each homeroom class singing a different Christmas carol, often of the religious variety – it was a nonissue in those days. On Christmas Eve, at the appointed time, we would huddle around the radio at home and listen for our song. It was played only once, so you had to be ready.

My parents hosted what they called an Open House on Christmas Eve. To me, it was just a big party that started in the afternoon and lasted until late at night. My mother, a quadriplegic, was universally loved in our town. She had been through so much pain, yet had endured it with uncommon grace and good spirit. I think a major reason we had such a strong turnout each year was because people just wanted to be around Vernice, especially at Christmastime.

The guests would enter our house amid great fanfare. Most would bring something delicious and homemade. But the favorite visitors were the ones who placed a fifth or half-gallon of Jack Daniels under the tree for Dad. My father was a social, happy drinker. I never considered that he had a drinking problem, and looking back I still don’t. In fact, I enjoyed being around Dad when he was into the Jack and water. He was a purist in this regard. If you insisted on soda or some other mixer, you were served Jim Beam, a lesser grade of bourbon.

When I was a young boy the adults would shuffle me off to bed at a decent hour, employing the old adage, “The sooner you get to bed and to sleep, the sooner Santa will come.” But, in fact, although I may have gone to bed I would often lay awake for hours listening to the loud, alcohol-fueled conversations drifting down the hallway from the kitchen and living room. I loved to eavesdrop on the stories that I was otherwise not allowed to hear. Christmas Eve was the most educational day of the year for me.

When I was in high school, and Kim was my girlfriend, there was another aspect of Christmas Eve that worked out very well for us. Danny and Darlene, neighbors from across the street, would come over to the party for a couple of hours. During that time Kim and I would babysit their two sleeping children. Danny and Darlene had a water bed. Enough said?

When I was in college, my brothers and other people my age became the late-night partiers, staying up long after my aging parents. I wonder if Mom and Dad eavesdropped on our loud conversations and became educated about things that they otherwise wouldn’t have.

Then one year, out of the blue, my mother told me that there would be no more Christmas Eve open houses for the next seven years. I was incredulous. “Why?” 

My father was a shift foreman at the paper mill. He worked a rotating schedule called the southern swing. They knew that for the next seven Christmas Eves he would be working the 3 PM to 11 PM shift, and so there would be no parties. I was heartbroken. That tradition was my favorite part of Christmas. Sadly, everyone in town moved on and developed new Christmas Eve traditions, and my parents grew old. The Christmas Eve open houses never resumed.

And now having written this piece, I realize how very much I miss my parents, all of my friends and relatives who are no longer with us, and this simpler time in our lives. The ghosts of Christmas past do indeed haunt me. 

Wheelchair Winters

note: click on any of the photos to enlarge

Snowfall in this part of Maine begins in December and can linger through early April – a full third of the year. Before I was diagnosed with MS I had no sympathy for the snow haters. My mantra was, “If you don’t enjoy the winters in Maine, then you shouldn’t live here.”

Those of us from northern climates have fond childhood memories of the snow. If you want to witness joy in its purest form, take some children with lots of energy and imagination (which is almost every child), gently toss them into a fluffy, white snowbank, and watch what happens.

From grade school through college, winter was all about downhill skiing for me. There were no major ski areas near our house in Lincoln, but we were a short drive from a short mountain, called Mount Jefferson. There were maybe eight trails; one clunky, old T-bar; and one rope tow. We didn’t care. We had a lot of fun anyway. Unlike at the large ski areas that most people frequent, skiing here was a very intimate experience. We kept running into the same people all day long, and all winter long. Naturally, Mount Jefferson became the setting for much of my clumsy romantic maneuvering, almost always for naught.

In college, Kim and I purchased season’s passes to Sugarloaf Mountain, a major resort in Western Maine, about two hours away from the University of Maine. We paid $110 for the discounted student pass. During one winter I was completing an internship at a paper mill not far from Sugarloaf, so Kim hitched rides there with Cookie and Shostak, my fraternity brothers, and we would meet for the weekend.

After college, we moved to Ohio and Vermont for a few years and continued skiing sporadically. Soon after we moved back to Maine I took up snowmobiling, and my skis only gathered dust in the basement from that point forward.

Driving my snowmobile down a freshly-groomed trail on a cold, crisp morning was the closest experience I ever had to flying. I don’t mean flying like a plane. I mean flying like a bird.

When I was in that zone, crafting seamless turns at the maximum safe speed, or just slightly above, there was nothing like it. Puttering along at a slower pace and taking in the scenery was nice too, but that was not the experience I craved. My ideal ride was at once sublime and exhilarating: reading poetry while hanging on the edge of a cliff…eating crème brûlée in a hurricane.

I was hopelessly addicted to the endorphin rush of high-performance, cross-country snowmobiling. But it ended in 2008, when I could no longer operate a snowmobile because of my MS. This may have been for the best anyway. Being a husband and father, I didn’t need to wrap myself around a tree in the Maine wilderness at 100 mph. And so I became one of those people who I had pitied and scorned for most of my life. I no longer had any use for the snow, yet I continued to live in Maine.

I’m quite sure Kim and I won’t follow my own advice and live elsewhere. Reason #1 is that summers here are perfect for a person with MS – nice and cool because of ocean breezes. Reason #2 is that Kim’s career is here. Reasons #3 through #100 are the family and friends who we live among. We’re not going anywhere.

Two winters ago the weather was freakishly warm, and it rained when it should have snowed. I was free to cruise the neighborhood in my wheelchairs, with no ice patches or snow banks in my way. If this is global warming, I thought, then bring it on. Last winter turned out to be unusually cold and snowy, including one storm where we received 32 inches of snow. If this is global warming, I thought, then no thank you. The picture to the left is what poor Phoebe woke up to that morning. How was she supposed to go pee?

I understand that the implications from global warming are not straightforward. Climate change may have been more responsible for the cold and snowy winter than it was for the freakishly warm one. Who knows? However, if our trend is toward more winters like two years ago, and there are fewer fluffy, white snowbanks and frigid temperatures in my future, I’m not going to complain.

Don’t worry. I’ll still do my part to save the planet by voting for alternative energy projects, reduced carbon emissions, etc. But at the same time, I’ll be secretly hoping for rainy winter days.

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