Once upon a time, in a faraway land called Happy Valley, there lived a good and honest sharecropper and his four capable sons, who were actually two sets of mirror-image twins. One set of twins was particularly sturdy and strong. They could stand up to anything. These brothers were so connected to one another that many considered them to be joined at the hip. The other twins were less strong, but more agile, and were best suited for complex farm chores. They worked hand-in-hand to assist the Farmer.

All of a sudden one of the particularly sturdy sons began to feel strange. He grew tired and listless. About a year later his sturdy twin began to feel the same way. They had each become lame. They continued to get worse and worse until after a number years they could not help out with the farm work at all. Luckily, the other set of twins remained healthy and used their agility to keep the farm moving.

About five years later, one of the agile twins began to feel weak, just like the sturdy twins had years earlier. And sure enough, after one more year, the other agile twin followed suit. Everybody slowly got worse over time. Today, the formerly sturdy and strong twins, who could stand up to anything, can’t move at all and must be carried everywhere. One of the agile twins can still move around a little bit but can’t accomplish much. That leaves all of the farm work for the healthier agile twin, but he is getting more lame every day.

So now the Farmer is relying on the semi-lame, agile twin and the goodwill of the farmer’s (lovely) wife to fertilize the soil, plant the seeds, and harvest the crops…of life.

The End (for now)

Cast of characters:

The sturdy twins – my left leg and my right leg
The agile twins – my left hand and my right hand
The Farmer – me

The moral of the story:

When things start to fall apart, you better make the most out of your remaining assets, and you better have a steadfast support system. “Buying the Farm” is to be avoided until all other avenues have been thoroughly exhausted.

Now that you’re privy to the subtext, feel free to go back and re-read The Parable of the Farmer and His Four Sons. It draws the arc of my life story these past ten years.

I defy you to name a more amiable and lovely 18-year-old than Libby, my niece. She is simply a joy to be around. Libby and her parents recently paid us a visit, and she introduced me to her Kindle, an e-reader sold by Amazon.com. I was aware of its existence, but I’d never seen one first hand.

I have always been a bit of a purist when it comes to books. To select my next book, I prefer browsing through Borders as opposed to searching on Amazon.com. Yet, the practicalities and the cost savings have made my trips to Borders few and far between. When I read a book I like to feel it in my hands. My eyes are calibrated for ink on paper. All of my finished books go on the shelf beside my Junior High Chess Championship trophy. “Hey everyone, look what I read.” E-books yield none of the pleasures described above (or do they).

After holding the Kindle in my hands, I was most struck by how thin and light it was. Also, I expected a typical computer type display – an LCD screen. But instead, the Kindle has this unique interface that reads as softly as the page of a book.

Libby showed me all the cool features, and taught me that Kindle books actually cost less than hardcover books (could I afford not to buy a Kindle?). Libby explained how she can order books and have them downloaded within sixty seconds, not delivered in seven days, and without shipping costs. In no time at all, I felt that old familiar pull I have for cool, new gadgets.  I would have a Kindle.

Here’s the deal.  Reading books and newspapers has become a physical challenge for me. I find hardcover books to be heavy, and I have trouble finding a comfortable position to set the book in so that I can turn the pages with ease. Toting books around to places like parks and waiting rooms is a chore.

Kim and I had been on a bit of a spending spree, however, what with the new power chair in my van and the new power bed in my bedroom. So I put the Kindle (a power book of sorts) on my mental wish list. It’s not expensive- like a TV set or a laptop computer- only $139. Maybe I would get it for Father’s Day, on my birthday, or at Christmas. Despite my reluctance to dole out the cash for a Kindle, I never stopped talking about it.

A couple of weeks after Libby’s visit, Kim volunteered to play in a charity basketball game – the teachers versus the kids at her middle school. There was also a raffle. Have I mentioned that Kim wins a lot of raffles and various other contests? We almost never pay for tickets to concerts, and we often dine for free. Back in 1986, when we were just starting out, she won a $1,000 shopping spree. We were so poor at the time that it felt like we had won the Powerball jackpot.

When Kim came home from the charity basketball game she sported a sly grin, having thought for the last 30 minutes or so how this would play out.  I noticed that she clutched a shopping bag in her right hand, and she said, “You are going to love me.”

I looked at the bag, and I began to imagine the possibilities. Often, Kim comes home from events like these with leftover goodies. “Chocolate?” I dared to ask.

“Oh no,” she responded, “It’s something much better than that.” I couldn’t, for the life of me, fathom what could be better than chocolate.

She reached in the bag and pulled out a box, of just the right size, with Amazon.com printed on the side. My heart rate jumped.

“No!” I said.

“Yes!” came her reply.

I opened the box and inside was a shiny new Kindle. I was more delighted than a child on Christmas morning.

The Kindle has been everything I hoped it would be. It has reinvigorated my passion for reading. I can read wherever and whenever I like. The Kindle fits nicely in the pouch of my wheelchair, and I can take it with me wherever I go. Best of all, the only physical requirement is that I can wiggle my right thumb ever so slightly in order to operate the Kindle and turn its virtual pages. That should be doable for a while.

I went online and found a protective case that doubles as a stand. See the photo to the right.

I especially appreciate the combined benefit of these two new toys- my Kindle and my Power Bob bed. After all, isn’t reading in bed one of life’s finer pleasures?

Why is it that two particular types of retailers treat consumers as if we are complete idiots? Yes, I’m referring to auto dealerships and discount furniture stores, and their inane commercials. Although they annoy me to no end, I have been known to purchase items from these establishments if they have a great deal. I even bought a car once from a dealer who called himself Jolly John.

In New England, the discount furniture market is utterly dominated by a chain called Bob’s Discount Furniture. Bob’s commercials are produced as if three-year-old children are the target market for his sofas and dining room tables. But this guy is taking his quirky persona all the way to the bank. He owns more than 40 stores, and if he’s not near you on the east coast yet, he soon will be. As a result, he lives quite comfortably, thank you.

So what does this have to do with me (notice how almost all of my blog posts have something to do with me)? Here’s the deal. Once I’m in bed, I am kinda stuck there in terms of what positions I can easily get myself into. I can’t sit up to watch TV or read. I can’t raise my knees up and prop something against them. I can’t easily shift from lying on one side to lying on my back to lying on the other side. I just can’t get comfortable. This is where Bob comes in.

After watching a particularly absurd commercial, it occurred to me that one of his products might render my time in bed much more enjoyable (okay, my adolescent readers, let’s pause right here so that you can get your get your giggles out of the way). The product is called the Power Bob bed. The Power Bob can automatically raise and lower your head and feet. You can get this bed in king-size such that each half of the bed, mine and Kim’s, can be operated independently. The Power Bob gives you most of the benefits of a hospital bed, without the loneliness.

So we bought the Power Bob, at a price well below that of the national brands, and set it up in our bedroom. Wow, what a wonderful investment!

I make use of the Power Bob in two primary ways. For the first time in years, I can go to bed early or stay in bed late and enjoy television or reading, by raising the upper half of my body using the power Bob.

Also, if at any point during the night I start to get uncomfortable from lying in one position too long, I can raise my feet a couple of inches, or my head a couple of inches, and that seems to help. The Power Bob is doing for me in bed what a wheelchair does for me out of bed. It gives me a little mobility, and a little mobility is a good thing.

Kim loves the new bed too. It’s so much more comfortable for her to sit up using the Power Bob than to prop herself up using a pile of pillows behind her head. Maybe everyone should have a Power Bob. If I ever run for public office perhaps I’ll borrow from the Herbert Hoover campaign slogan: “A chicken in every pot and a Power Bob in every bedroom!”

I was unsure how my disability income would be taxed, so I erred on the safe side and had Kim withhold more money from her paycheck than any reasonable person would. As a result, we received a rather large tax refund. We’ve since adjusted Kim’s withholding, so that we should have only a small refund next year, and each of her paychecks will be a bit larger going forward.

So, what should we do with the refund money: pay off credit card, home equity, or other debt; invest in an IRA; help the kids with college costs; or go on a cruise? Those are all good options, but we had another idea.

As I’ve mentioned in numerous posts, I probably won’t be able to drive my adapted van much longer. In fact, if we had not taken action last week, I was almost ready to hang up the keys for good.  But the critical problem isn’t (yet) with my left hand which operates the adaptive driving controls in the van.  It’s that I’ve become too weak to safely and smoothly accomplish the elaborate dance of transferring from my wheelchair to the driver’s seat (and back).

I’ve always known that I could have a power driver’s seat installed. Such a seat slides all the way in to the center of the van and rotates 90° so that I can easily transfer from my wheelchair to the driver’s seat, and then push a couple of buttons to place me squarely in the driving position.

I’ve avoided investing in this seat though, because I thought my left hand would be the reason I would eventually stop driving, and I didn’t want to spend the money unnecessarily. That was the thinking.

It’s funny how your perspective changes when facing the imminent loss of something like the ability to drive, especially when you have a wad of cash burning a hole in your pocket. As you may have already surmised, I spent the tax refund on a new power driver’s seat for my accessible minivan (see photo at top). I’ll now be able to continue driving until my left hand becomes too weak.

Down the road, will I look back on this purchase as money wasted? I will if I stop driving due to left hand weakness sooner rather than later. But I hope that I’m able to continue driving for a while.  If I’m so fortunate, I’ll consider this an appropriate use of a financial windfall in order to preserve my independence for a while longer. Only time will tell.

Many disabled people don’t have the financial resources to be faced with spending decisions like this, so I’m not complaining. I’m just explaining. When you have a chronic, disabling disease you’re forced to make absurd financial decisions regarding how much to spend on purely temporary efforts to preserve mobility. What price freedom?

When Kim and I were both working and pulling in decent salaries, I didn’t hesitate to purchase snowmobiles, ATVs, guns, or other rednecky apparatus. Life is short, right? But now that my financial contribution to the family pool is much smaller, and so is the size of the pool itself, I sometimes feel guilty about spending money on disability equipment which will improve my quality of life (for a while) but that I don’t absolutely need. It’s just another dilemma- courtesy of my favorite little disease.

As I’ve written here before, although it is unfortunate that I need these assistive devices, the days that I’ve accepted crutches, a scooter, or a wheelchair were actually very good days.  Suddenly, I can do something better than I could do it the day before.  So I’m not regretting that I require a power driver’s seat, but I’m instead celebrating the fact that I’m still driving, and that it’s even a little easier for me today than it was yesterday.  

Oh, and I bought a new camera too, which I can mount on my wheelchair. Check back here for photos and videos.

(Photo credit: circulating)

How many times have you wished for a crystal ball? It’s human nature. We long to know what the future holds.

But what if you already understood that your prospects were bleak? Would you want to know precisely how bleak, or would that serve no useful purpose? Unfortunately, I’m not given a choice, because my crystal ball shows up once or twice a year, and when it does I am powerless to look away.

I don’t get very ill, very often. But once or twice a year I’ll come down with a fever that usually lasts 24 to 48 hours, and it knocks the crap out of me. That’s because when my body temperature rises my MS symptoms are exacerbated.

I’ve learned that my condition when I have a fever foreshadows my condition at normal body temperature after another six months or a year of MS progression. Frankly, I’d rather not know. The news is never good.

In fact, I was visited upon this past week by my crystal ball, due to a chest cold. I learned just how much more difficult simple tasks like eating, dressing, and transferring from my wheelchair will be in the coming months. It was a fairly unsettling preview.

I hesitate to burden you with this somewhat gloomy post, but I think it’s important to remind everyone just what a crappy disease MS is. If you’ve read this blog for very long, you know that I’m a relatively upbeat and well-adjusted guy. I think I’m handling my challenges well. So don’t worry, none of that has changed. I’m just being straight with you.

You may have heard prominent neurologists or pharmaceutical reps say that “it’s a great time to have MS,” or that “MS is a highly treatable disease.” This may be the case for some people with MS, but it isn’t the case for those of us with advanced, progressive MS (except for better wheelchairs and easier internet navigation tools). We have no treatment. We have no cure. MS just sucks more and more every passing year. We cannot, as a patient population or as a society, be satisfied with the pace of medical research on MS.

A strange thing happened when my fever retreated last week. I didn’t so much lament my uncertain future as I celebrated my return to my current “normal,” which I have a renewed appreciation for.

I’m not exactly sure how we’ll get through each day a year from now, but I’m confident we’ll figure something out.

I wrote two posts earlier, here and here, about the five houses that Kim and I have owned so far. With the last three houses, MS has been or at least should have been a factor in what type of home we purchased. Now, here we go again. MS is once more the impetus for a change in our living arrangements.

Where we live now is acceptable, just not optimal. The house itself is well adapted for wheelchair use. I have ramps, wide hallways and doorways, and a roll-in shower. The problem isn’t the house itself; it’s where the house sits.

Soon, I will no longer be able to drive. I gave up driving with my legs a couple of years ago, when they became too weak to operate the brake and gas pedals. Now that my arms are failing in a similar fashion, I won’t be able to manage my hand controls for much longer.

Once I can’t drive a motor vehicle, living in suburbia will become a bit confining. I’d like to live in an area where I can use my power wheelchair to call on restaurants, parks, stores, and yes, even a bar now and then. Throw in a hospital, library, or chocolate factory, and that might just seal the deal. In order to meet this goal, I’ll need to move from the suburbs to the city. That means no more barbequing, campfires, or even dogs (I can’t walk a dog multiple times a day).  Life is full of tradeoffs, especially a life with MS. 

As we evaluate various urban neighborhoods, we want to make sure that a given condo or house is in an area with a high density of the types of establishments I’m looking for. There is no wheelchairability index that I am aware of, but there’s something almost as good. There is a walkability index. Granted, just because a neighborhood is considered very walkable does not mean it is wheelchair friendly, but at least it gives me an indication.

To find the walkability index for any address in the country, all you have to do is enter in the street address, city, and state at http://www.walkscore.com/. Within a few seconds you’ll see a walkability rating between 0 and 100, as well as a map showing all the establishments that went into the scoring algorithm. The walkability rating at my current house is a putrid 12 out of 100. This puts it in the “car–dependent” category. Some of the neighborhoods we are looking at have walkability ratings in the 80s, which is “very walkable,” or in the 90s, which is a “walker’s paradise.”

The good news is that I can be patient, theoretically, because my house is suitable, just not ideal. But in practice, this isn’t really the case. My wife brings many admirable qualities to our marriage, but patience in situations like this is not her strong suit. Now that we’ve initiated the search process, she is scouring the earth to find new housing, and she won’t rest until she does. So I have a feeling this will happen sooner rather than later, if for no other reason than the preservation of my dear wife’s sanity.

Isn’t it ironic, though, that somebody who can’t even walk a single step would be so interested in living in a walker’s paradise?

I’m fascinated by quotations. It’s one thing to make your point in a paragraph, a chapter, or a book. But it’s quite another thing to thoroughly articulate a philosophy in only a sentence or two.

Happiness is not achieved by the conscious pursuit of happiness; it is generally the by-product of other activities. – Aldous Huxley

I’ve heard it said in so many ways- in order to find contentment you need to stop consciously searching for it. Live a good life, and with luck, happiness will come to you, probably in a form you did not expect.

Those who agree with us may not be right, but we admire their astuteness. – Cullen Hightower

Ignorance loves company!

The nice part about being a pessimist is that you are constantly being either proven right or pleasantly surprised. – George F. Will

I wouldn’t call myself a pessimist, but rather a skeptic or a realist, which are just gradations of the same perspective. For example, many MS patients hear about potential treatments and instantly make the leap to HOPEFUL. I, on the other hand, prefer to maintain a healthy skepticism about potential treatments like CCSVI. I research the issue. I even submit to the treatment, all the while accepting that it may or may not work for me. In this way, my skepticism will either be proven (consolation prize), or I’ll actually see some benefit (grand prize). But I won’t get my hopes up, only to have them come crashing down. Although I am motivated by a general sense of hope, I am careful not to go “all in” on any specific prospect.

Half of the modern drugs could well be thrown out of the window, except that the birds might eat them. – Dr. Martin Henry Fischer

I like this quote because it speaks to my growing dissatisfaction with the medical establishment, especially the pharmaceutical industry. Big Pharma does exactly what they’re designed to do, which is to maximize profits instead of patient well-being. So it’s not the companies that are broken; it is the system. The companies endeavor to meet their fiduciary responsibility to shareholders, within the constraints of the law- end of story. It’s just that, and I hate to say this as a committed free-market advocate, capitalism simply is not the appropriate instrument to provide patients with the best drugs, treatments, and cures. Yet, I fear the situation would only be worse if the government ran the pharmaceutical industry. What a dilemma.

Most advances in science come when a person for one reason or another is forced to change fields. – Peter Borden

Today, interventional radiologists and other vascular specialists, because of CCSVI, are interested in what has always been considered a neurologist’s disease- multiple sclerosis.

Seek simplicity, and distrust it. – Alfred North Whitehead

Occam’s razor is a principal which recommends selecting the competing hypothesis that makes the fewest new assumptions, or in essence, offers the simplest solution. This speaks to the first half of the above quote.

Yet, common sense and human experience tell us that if something is too good to be true, perhaps too simple, then we should distrust it. This speaks to the second half of the quote.

I love quotes like this, only five words long, which shed light on an essential human paradox.

The fact that an opinion has been widely held is no evidence whatever that it is not utterly absurd; indeed in view of the silliness of the majority of mankind, a widespread belief is more likely to be foolish than sensible. – Bertrand Russell

Everyone knows that multiple sclerosis is an autoimmune disease, or is it? The popularity of a hypothesis does not render it legitimate.

Too many people are thinking of security instead of opportunity. They seem more afraid of life than death. – James F. Byrnes

This is another quote that speaks to a basic conundrum of human existence. If we live our lives too conservatively, we may avoid the great negative results but also the significant positive results. Each individual seems to be preprogrammed with one tendency or the other. Due mostly to my internal wiring, and perhaps somewhat due to my personal experiences, I am uncomfortable with too much safety and more inclined toward taking what I consider a reasonable amount of risk. To each his own.

There is a theory which states that if ever anybody discovers exactly what the Universe is for and why it is here, it will instantly disappear and be replaced by something even more bizarre and inexplicable. There is another theory which states that this has already happened. – Douglas Adams

I have a particular interest in the “why am I here” quotes, especially humorous ones.
And I’ll leave you with this unsatisfying quote:

1. Never tell everything at once. – Ken Venturi