My Pet Peeves

If the video does not play for you, go to this link: http://www.youtube.com/watch?v=1diQG2Fz474

When Spouses Become Caregivers

Keep in mind that it's not only me. It’s Kim too. We’re both suffering from the effects of MS.

Sure, I'm the one who has the disease, the one whose central nervous system is dissolving day by day. I’m the one who can't work, who sits in a wheelchair, and who grows more dependent on others each day. But I'm not the only one suffering. My wife has decided to come along for the ride, and that makes me question her sanity just a little bit.

Make no mistake about it; this is a choice. Many marriages break up in the wake of an MS diagnosis. I prefer to think that MS either accelerates the inevitable, or becomes the last straw, in marriages that are already flawed. In strong marriages like ours, it seems inconceivable (but yet I know it isn’t) that a tragic medical diagnosis would drive a wedge between committed partners. My point is that Kim remains with me by choice, and for that I am grateful. I’m also in this marriage by choice. But let’s be realistic. If I wasn’t happy I wouldn’t exactly have other options. I don’t feel trapped at all, but I’m sure that others in my situation or in Kim’s situation do, and that is a sad thought.

We shouldn’t assume that all MS breakups are about heartless, healthy spouses leaving helpless, sick ones. Those of us with MS need to work hard at being easy to care for. Maybe I’ll ask Kim to author a future post about just what easy entails. I’m guessing I would get a passing grade in that regard, but not an A+, perhaps a B-.

Here are a few practical examples of how Kim's life has been affected by MS:

She no longer spends even a single night away from home. I need help getting into bed. I need help in the middle of the night. I need help getting out of bed. We should formulate a backup plan in case she becomes suddenly ill, unexpectedly injured, or just temporarily misplaced.

Kim is on her own when it comes to maintaining our household. All the chores, all the seasonal activities such as raking leaves and shoveling snow, all the minor repairs, everything that needs to be done to keep our house in good order, is accomplished by her. She is so damned frugal (cheap) that she won't hire anyone to help. She is so damned conscientious (anal) that she won’t do anything half-assed, even if she is exhausted.

In some marriages the opportunity exists for at least one spouse to consider risky, more fulfilling, or even more altruistic career paths at some point. Also, other couples enjoy at least the fantasy of one day picking up and moving to another part of the country or another part of the world and starting over. But none of those options are available to us anymore. We rely so much on Kim’s income and benefits that she is essentially restricted to her current employment situation, or only the most circumspect growth opportunities therein. It’s a good thing that she loves her job.

And here are a few, more intangible examples of how Kim's life has been affected:

She must, on occasion, wonder what my continued progression is going to mean for her. Is she going to be able to handle it? What will be expected of her? What if she falls short of what is required?

I may appear to be well-adjusted and content, and to a large extent I am. My physical needs are being attended to. But Kim must sometimes wonder if I’m not hiding something from her due to pride, shame, or concerns for her happiness (who, me?).

None of us knows what lies ahead in our lives- lightning strikes and cancer diagnoses come to mind- but for the spouse of somebody with a chronic disease like MS, this level of uncertainty is amplified, and so is the level of associated stress.

Disability introduces some interpersonal communications challenges. I'm guessing that Kim has conversations with herself like these:

• Should I offer to help with what he is struggling to do right now, or should I leave him alone so that he can accomplish it himself? Is this a time to intervene or a time to observe from a distance?
• If I dare to go out and have fun without him, should I feel guilty for leaving him behind? Is he really okay at home with Phoebe tonight?
• Mitch is capable of independently accomplishing what he’s asking me to do for him, although it would certainly be easier for me. Is this one of those times when I should push back, or would life just be simpler if I do what he asks? (From my perspective the identical situation might be viewed like this. I know I can probably accomplish this task by myself, but it will take a lot of energy and may cause significant frustration. Should I ask her for help or should I just suck it up and do it myself?)

So, the next time you see a couple where one partner is handicapped, I suggest you reserve as much or even more admiration and compassion for the caregiver as you do for the disabled person. One of them may be stuck inside a bottle, unable to escape. But the other one is peering into that bottle through clouded glass, trying to figure out what the heck is going on in there, and wishing she could slip her hand inside to help.

And how do I feel about this situation? I am so fortunate to have a life partner with as much empathy, energy, patience, courage, and love as Kim. You might think that having my wife become my caregiver would drain the romance out of our marriage, but I prefer to look at it this way. I am head over heels in love with my sexy caregiver, and we are embroiled in a steamy love affair. How cool is that?

The Health Impact Fund - An Innovative Approach to Medicine or a Pipe Dream?

“No problem can be solved from the same consciousness that created it. We must learn to see the world anew.” Albert Einstein

Governments, political bureaucracies that they are, simply are incapable of providing most goods and services effectively. That’s why capitalism has been relatively successful and communism hasn’t. I cringe whenever it is suggested that more government involvement is needed in order to solve a problem.

I'm a free-market, small government, minimal regulation guy, but only to the extent that said free-market serves the needs of the populace. The pharmaceutical industry isn’t doing that, not by a long shot.

The failure of the pharmaceutical industry to meet our needs is not due to evil people or evil corporations. It would be so much simpler if it was. It's because of a broken system. The story goes that by maximizing profits and shareholder value pharmaceutical companies provide the most effective, lowest cost drugs, and make them available to the widest number of people. This model works for industries like computer hardware and athletic socks. Does it work for medicines? No.

I’ve railed here before about how our system of developing, testing, pricing, and delivering drugs is an utter failure. But my friend, Wheelchair Kamikaze, says is so much more eloquently. Please give his post a read, but then come back here for more!

Thomas Pogge, of Yale University, recently gave a Ted talk about this dysfunctional model. He does a credible job of describing the failings of the current system, and articulates the goals of a new one. He points out that most drugs are relatively inexpensive to manufacture. The significant income that the pharmaceutical companies generate from their patent protected drugs does make the shareholders wealthy, but it is also wasted on marketing, lobbying, litigation, and other non-value added activities.

Pogge suggests that if we were to redesign the pharmaceutical industry from scratch, we would have the following objectives:

- Patients would have access to important, existing medicines regardless of their country and income.
- Research and development investment would target the innovations that promise the largest health gains, not necessarily the greatest corporate profits.
- The entire system would be cost-effective so that money spent on medicines would achieve as much as possible for human health, as opposed to squandering money on non-value added activities.

The current system does a poor job regarding all three of these objectives. Pogge makes the point that it is unrealistic for us to simply pressure pharmaceutical companies to adopt more altruistic business strategies. They are operating in a free-market system, and have no choice but to meet their fiduciary duty to their stockholders within the constraints of the law. Otherwise they would go bankrupt.

Pogge proposes a solution called the Health Impact Fund. In a nutshell, this would be an endowment financed from tax revenues (can you see me cringing?) which would reward pharmaceutical companies based on the health impact of their drug on the global population. Pharmaceutical companies would sell the drug at cost, and would be rewarded from this fund rather than realizing profits as they currently do. Please watch the video below and visit their website for a more thorough explanation.

I like the theory behind the Health Impact Fund, but I'm afraid that it is fraught with logistical nightmares, too many to go into detail about in this post. But I hope that they prove me wrong, and I commend this group for offering a solution and for actually trying to raise money for a pilot program.

If not this idea, then what? How can we overhaul the pharmaceutical industry so that it serves the needs of the human population, without having it become a bureaucratic nightmare and just another failed government program? I don't think minor tweaks are the answer. I definitely don't endorse socialization of the pharmaceutical industry. I'm sure other proposals have been made on how to repair the pharmaceutical industry. If you know of any, please share them with us in the comments section.

What’s so damned frustrating is that we can’t seem to get out of our own way. We have a clear and urgent need. We have abundant talent in both the public and private sectors. But while we debate, posture, blame, and politicize, incalculable human suffering continues.

Trust me. I know.

Losses and Gains

As you know, I try to strike a balance here. I don’t sugarcoat my condition, but neither do I wallow in self-pity. As such, it seems appropriate to render an honest assessment of what I’ve gained and lost in the past year, and what changes may await me in the next couple of years.

Note that with my type of MS, the losses are not transient or reversible, but rather constant and permanent. Frankly, I hadn’t realized how rough a year it had been until I compiled the list.

And the gains? They can be fleeting or, with luck, they may last forever.

2011 Losses

• Driving (click here)
• Getting into bed unassisted
• Dressing myself, including footwear
• Reaching above my head (click here)
• Almost anything with my left hand (click here)
• Reading hardcopy books, magazines, newspapers
• Preparing my own meals and cutting the food in my plate
• Some washing/grooming tasks
• Most handwriting tasks
• Any hope for CCSVI success for me (click here)

2012 - 2013 Potential Losses (I’ll make a progress report in 12 months)

• Operating zippers
• The rest of my washing/grooming tasks
• The rest of my handwriting skills (signing my own name)
• Sitting up in bed, unassisted
• Transferring to and from my wheelchair unassisted
• Feeding myself
• A few things that I can’t even imagine (the devil you don’t know)

2011 Gains

• About 10 pounds (5 since Thanksgiving)
• A much more accessible neighborhood (click here)
• A wonderful new home (click here)
• Kindle e-reader (click here)
• Great vacation to western U.S. (click here)
• Long term disability benefits secured until age 65 and Medicare for life (click here)
• More new friends

2012 Potential Gains

• New power wheelchair for primarily in-house use (delivery this month)
• Saving the iBot (click here)
• Trip to Bahamas (February)
• Still more new friends
• Entire summer in new, more walkable neighborhood
• Stabilization of disease progression (unlikely, but possible)
• A few things that I can’t even imagine (like a Powerball win or an appearance on Ellen?)
• Another year above ground

Ralph Waldo Emerson once wrote, “We do what we must, and call it by the best names.”

So what do we call this? Life, I guess.

It’s still way better than the alternative.

Saved by the iBot

If I would just stay home then I wouldn’t get in so much trouble. But what fun would that be?

As I wrote about here, every Holiday Season my wife and I try to get out and enjoy one of the many wonderful Christmas-themed shows in the greater Portland area. This year we scored tickets to the hip-cool Nutcracker Burlesque at the St. Lawrence Arts Center, located in an old church that has been converted to an intimate, 110 seat theater.

When we arrived at the playhouse, me in my iBot and Kim in her f**k me boots, we were led directly to the wheelchair lift. "It's easier if I close the door at this level, and go operate the lift from the upper level. Is that okay?" asked the manager. We nodded and smiled.

Now that I’m recalling these events, and with the benefit of hindsight, I realize that she seemed a bit unsure of the operation of the lift from the get-go, hoping for the best but fearing, well, complications.

We could see her in the glass window of the door one level up. She turned the key and we started slowly moving up the elevator shaft. After a few seconds, we stopped.

“Don't worry,” she quickly exclaimed. "Everything is all right. Just one second…"

Well, the seconds turned into minutes. Other people were called to look over the situation. They were all profusely apologetic and concerned for our state of mind – being essentially trapped in an elevator. We tried to put everyone at ease so that they could concentrate on the technical challenges at hand instead of worrying about us. As all of my disabled readers can attest, when you leave the confines of home and venture out into the disabled unfriendly world beyond, you better be mentally prepared for bumps in the road.

Finally, the theater manager admitted defeat, cursed at the lift, and told us that she was calling the elevator company. The show was due to start in a few minutes, so Kim and I became creative. Kim has always been very athletic, and we could see that by standing on the half walls on the side of the lift, she would be able to pull herself up onto the second floor landing. We thought that reducing the cargo weight in the lift was worth a try. So Kim, boots and all, climbed up to the next level. The lift still wouldn’t move, up or down.

Then we realized that the lift was actually closer to the main floor than to the second floor. I began to envision a situation where if I could separate myself from the iBot, a group of people might be able to lower the iBot down onto the main floor, and then somehow assist me afterward. I took control and started giving orders, asking for a stool that I could transfer to from the iBot (there didn’t seem to be enough room for a chair). They hurriedly found one and lowered it down the shaft from the second floor. Kim and the theater manager helped transfer me from the iBot to the stool. Step one was complete.

We then powered down the iBot and put it in freewheel mode. Kim, the theater manager, and two stagehands carefully lowered the 290 pound iBot from the lift onto the main floor. Step two was complete.

But there I sat atop a tall stool, on a lift two feet above the main floor. I asked if they had a shorter chair that I could transfer to from the high stool. They did. Step three was complete. After examining the situation, it appeared that if I could execute an assisted slither half-twist or maybe a compound free-fall 180, perhaps I could transfer from the chair and stick a landing squarely in the waiting iBot. It worked. Greg Louganis, Shaun White, or Nancy Kerrigan would have been proud. Step four was complete.

You might ask why I was using the lift at all if I was in my iBot, which is a stair climbing wheelchair. Two reasons. First, we typically use the stair climbing function only if there is no good elevator, lift, or ramp available. Except when I’m in one of those iBot exhibitionist moods, we don't necessarily like to draw attention to ourselves. Second, I hadn’t practiced good iBot battery management in preparation for this outing, and hence my charge was a bit low. Stair climbing is a battery intensive operation. But we were left with little choice. We had to ascend the stairs or go home.

Have I mentioned how much I love my iBot?

Kim guided the iBot up the stairs with practiced ease, and we entered the theater lobby. Because the show was almost ready to start, there was only a small group of amazed onlookers. The theater manager was extremely apologetic. She offered me complimentary drinks and snacks. We had just finished dinner at a nearby restaurant, so I declined the snack. The wheelchair accessible bathroom was at the other end of the dysfunctional wheelchair lift, so I declined the beverages too, although at that point I certainly could have used a drink. Kim accepted a glass of wine.

The will call comped our tickets, but because we enjoyed the show so much we left a donation on our way out. As we were exiting the theater quite a crowd of patrons gathered around the stairwell while Kim expertly directed me and the iBot down the stairs to a chorus of oohs and ahhs. I still had enough battery life to get home. All in all, it was a pleasant evening out on the town.

I know how tight money is with non-profits these days, but I’m confident that the theater will now invest in repairs/upgrades for their ailing wheelchair lift. I hope to make a return visit someday. I recommend that others give the St. Lawrence a look as well. The venue is unique; the talent is eclectic; and the people are friendly.

If I had been in a traditional power wheelchair, the night would have ended on a sour note.  But instead, I was again saved by the iBot, this life-changing mobility device, and we were able to enjoy our evening out. Unfortunately, as you may know, the iBot is no longer being manufactured. For information about how you can help save the iBot, click here.

Have I mentioned how much I love my iBot?