I Keep Falling

Hoyer lift, used for lifting patients into/out of bed. (Photo credit: Wikipedia)

“Sometimes I wish for falling
Wish for the release
Wish for falling through the air
To give me some relief
Because falling's not the problem
When I'm falling I'm in peace
It's only when I hit the ground
It causes all the grief”

― Florence Welch

The type of wheelchair transfers I do are called “stand – pivot.” The reason that I can stand at all is because of the spasticity in my legs and Kim’s firm grip on the back of my pants, not because of actual standing ability. During this type of transfer there is a critical maneuver where I rotate 180° and land at my destination. It works pretty well, almost all the time.

But last Friday morning my legs lost their spasticity halfway through the pivot, and I started crumpling to the floor in slow motion. My legs were stuck in an awkward and painful position under my full body weight. “Pull me forward. Pull me forward!” I implored Kim. She was able to do that and I had a semi-smooth landing, face down on the carpeted floor.

Kim rolled me over and placed pillows under my head and under my knees. I was comfortable. We did the usual roll call of body parts and found that, once again, I had fallen without significant injury. She then went out into the garage to gather up the various pieces of our portable Hoyer lift. This would be the second time we had used this lift in the last year to raise me off the floor.

Did I mention that my daughter and her longtime boyfriend have moved into our house? There’s probably enough interesting material on this subject for a future blog post. Anyway, Nick heard Kim making noise while gathering up the Hoyer lift components, so he emerged from their luxury accommodations at the back of the house (which I fear are so cushy that they will never leave) so that he could help get me off the floor. The Hoyer lift is barely adequate for transferring a disabled person from a wheelchair to a bed, or vice versa. But this lift is not set up well for picking a large person off the floor. Therefore, Nick had to support my head and back while Kim operated the lift. Before long I was back in my wheelchair, only slightly battered and bruised from the ordeal.

Each of my transfers is now a near fall, except for the ones that are actual falls. I know that you are tired of reading about this sort of thing, and I am tired of writing about it, not to mention living through it. I realize that there are several choices for safer transfers. Instead of the stand – pivot, we can do the squat – pivot. Kim has been trained on this procedure. We can also use a slide board. I ordered one and it arrived last week. But these are merely incremental improvements. I’m inclined to make a dramatic improvement. What if there was a system that provided much safer transfers and actually allowed me to accomplish these transfers independently? How cool would that be? Well, there is such a system, and I’m trying to get my hands on one.

Stay tuned to this channel for further updates….

Here’s one parting quote on the subject of falling, by a man who ought to know.

“The greatest glory in living lies not in never falling, but in rising every time we fall.”  ― Nelson Mandela

An Argument from Love

“If you refuse to do it yourself, I’ll do it for you,” I threatened.

“Oh no you won’t!” Kim replied.

What had begun as a legitimate debate soon deteriorated into a test of wills.

Last week Kim received a letter from our primary care physician indicating that she was due for her annual physical. I informed Kim of the correspondence, and she was rather dismissive. “Yeah, whatever. I’ll make an appointment when they refuse to fill my prescriptions.” Yes, our doctor has been known to hold our prescriptions hostage if we don’t come in for a physical.

Kim’s attitude toward these annual checkups is not an uncommon one. Like so many people, she has no pressing health problems (that we know of) and is a very busy person. My understanding is that annual checkups are not as much fun for women as for men. I’ve seen the stirrups. Nevertheless, I just couldn’t let it go.

I argued that physical examinations are even more important as we grow older (perhaps an ill-advised tactic). I brought the letter over to her, and while channeling my inner male chauvinist (another ill-advised tactic) I demanded, “Call the doctor’s office right now and make an appointment.” I sat there, alternately staring down at the letter and up at her eyes, so as to indicate my resolve.

Unafraid, undaunted, and unimpressed, Kim pushed the letter back toward me and said, “No. I’ll do it when I feel like it.”

I slid the note back toward her and made that threat, “If you refuse to do it yourself, I’ll do it for you.”

“Oh no you won’t!”

“Try me.”

“It doesn’t matter, because the doctor’s office will never let you.”

“I guess we’ll find out, won’t we?”

I did it. I contacted the doctor’s office and they allowed me to make an appointment for Kim, no questions asked. I felt like the secretary to an important person.

My important person became steaming mad. “What you just did is not okay.”

Kim determined that my punishment was approximately one hour of the silent treatment. The tension in the room was palpable, but eventually it dissipated. Since that time we have made our respective cases to several impartial people, but few are foolish enough to choose a side. We each stand by our original positions.

As I began writing this account of the confrontation, I had to ask myself why I felt so strongly that Kim should make an appointment sooner rather than later. As I said, I didn’t suspect that she had any particular, underlying medical problem. That wasn’t it. Of course I have immense love and compassion for my wife. That was obviously a major factor. Given my own medical situation, I’m more aware of the effect that health problems can have on a person’s life, and the importance of frequent and open communication with your medical team. I go to these appointments with a long list of issues, many of which are addressed at least to some extent during the checkup. These experiences definitely influenced my desire to have Kim hurry up and schedule her annual physical.

But if Kim wasn’t both my wife and my caregiver, and I didn’t depend on her so completely for my personal well-being, would I have been so insistent? In the heat of the argument I truly felt that I occupied the moral and altruistic high ground. But was I also motivated by self-preservation, at least a little?

Like so many arguments, this one was a mosaic of legitimate concerns and questionable tactics. There were plain statements and hidden agendas, genuine concerns and shameless posturing. Even though intentions were good, communications were flawed. In the end, however, this was above all an argument from love, and that’s the most important thing.

Potpourri

It’s becoming more and more difficult for me to don my winter coat, even with assistance, especially the part where I try to stuff my arms into the sleeves. So I bit the bullet and ordered this ridiculously expensive winter Cape, which has no sleeves. Once I try it out, I’ll give you a review (picture on right). Who else wears a cape: Batman, Superman, the magician at your child's birthday party.

Marie Suszynski at Everyday Health published a column called Nine MS Myths, Busted. Myth 2, “Everyone with MS Ends up Severely Disabled”, and myth 9, “Everyone with MS Will Quickly and Steadily Get Worse,” are sadly ironic for me. But the rest of the items are pretty sound. Thanks to Stu's Views & M.S. News for this link.

Apple’s iPhone has an abundance of accessibility features. Click here for a summary.  I also came across this article in USA Today a couple of days ago: Five Things You Had No Idea Your IPhone Could Do. I'm going to try #1, and I've already started using #3. (sorry Al)

Maintenance and parts support for the iBot will expire on March 31. I know people are still working on saving the iBot, and I have my fingers crossed. I wasn’t aware that Dean Kamen brought the iBot on the Colbert Report way back in 2006. Watch this clip – very entertaining. Thanks to Cynthia and Charles Riordan for the link.

Here’s a TED talk that everyone with a brain disease, like MS, or anyone who knows someone with a brain disease should watch. Siddharthan Chandran: Can the Damaged Brain Repair Itself? I have little doubt that medical researchers will find a way to repair the damage done by neurological diseases, but will it be soon enough for people like me?

Finally, I wanted to let you know that I have been asked to write another “Men with MS” column in the magazine MS Focus. It will be in the spring issue, and I’ll let you know when it comes out.

Some Things I Miss (and a Few Things I Don’t)

Things I Miss

1. Walking (obviously) 

As a wheelchair user, I’m not only missing out on little slices of life due to accessibility issues. I’m also denied the many health benefits of walking. Every so often I stumble upon an article highlighting the importance of getting up and moving, like this one: Too Much Sitting Linked to Chronic Health Problems. I’ve grown to despise these reprimands. I get it already! Eventually, they all read the same to me – “Get up and walk, you lazy piece of shit, or suffer a horrible, untimely death.” 

Sigh. 

I also miss out on other health benefits. According to this article entitled Mental Benefits of Walking, putting one foot in front of the other reduces mental decline, lowers Alzheimer’s risk, improves sleep, lightens the mood, and can even serve as a form of meditation. 

I enjoy accompanying people on their walks, although it just isn’t the same for me as it is for them. But please, continue to invite me along. 

2. Helping out 

Whenever someone encountered difficulty, it was in my nature to step in and help out. Kim couldn’t reach something on a high shelf; I would get it for her. Neighbor got stuck in her driveway during a snowstorm; I pushed her car. Friend bought a new dishwasher; I helped him carry it into the house. Today I am only a powerless bystander. I realize that I’m still helpful in other ways. For example, I manage our family finances and dispense husbandly and fatherly advice, perhaps too liberally. And I understand that I’ve taken on new roles with my MS advocacy. But I miss being able to just step in and lend a hand when needed. 

3. Typing 

Dragon NaturallySpeaking is a lifesaver. It allows me to put words to a page without the use of my hands. However, I still miss typing, for a few reasons. First, our house has an open layout. When I'm dictating to my computer everybody within earshot knows what I'm saying, and that doesn’t work for me (other than the most mundane tasks such as responding to a straightforward email). Second, I had a pretty decent respiratory cold last week and didn't feel like speaking to anyone, let alone my computer. Third, Dragon is only about 95% accurate. This may seem impressive, but keep in mind that a typical blog post is about 1000 words. That means I have to find and repair about 50 errors in each post. 

Although Dragon NaturallySpeaking is a wonderful thing, it’s just not the same as typing. 

4. Spontaneity 

There a lot of things I can no longer do. The remaining activities all require a certain amount of planning, or unusual attention to detail, or both. Travel, dining out, going to the ocean, even having sex, requires forethought and preparation. Sometimes, knowing that there is planning to be done is enough of a barrier to discourage the activity altogether. I’m engineery, so let’s not pretend that I ever led a carefree life of whimsy. But I do miss the modest amount of spontaneity I used to enjoy. 

5. Having a career 

I was not a workaholic, and I'd be lying if I said I loved going to work each day, but having a career was personally fulfilling. I always played an important role in the companies I worked for, and people seemed to want me on their teams. I miss the feeling of usefulness that came with my career. I also miss the travel, and the money. 

6. Being away from Kim 

Please don’t misunderstand. If you've been reading this blog you know that I love my wife dearly, and that even before my disability we spent most of our free time together. However, there were certain activities that I enjoyed which required that I be away from my wife. Some of these, such as going with the guys for a hunting or sports weekend, are not practical for me anymore. I need Kim’s help just to get through the day now. Similarly, Kim used to get away for professional conferences and the occasional ladies weekend. At the moment we have no procedure in place for anyone other than Kim to be my caregiver. We should, but we don’t. Kim and I can’t be apart for even a single night. 

7. Playing sports and games 

When I was diagnosed at age 38, I wasn’t playing in any men’s sport’s leagues. But I was active. I could shoot a little hoops, play catch, ping pong, bean bags, billiards, Wii, foosball, etc. I was competitive, and won my share of contests. Online cribbage and Words with Friends help, but they don’t satisfy my need for play and competition. 

But I Don’t Miss

1. Golf 

MS gets the credit for rescuing me from a game that cost too much money, required too much time away from my family, and left me miserable more often than not, except for that hole in one. (Please don’t send me links to handicapped golfing websites.) 

2. Dancing 

I always hated dancing. Now I can’t. (Please don’t send me ideas for ways that I can dance in my iBot.) 

3. Swimming 

I could swim enough to keep from drowning, but it was an activity I never enjoyed. We had swimming pools in two of our houses, and they were wonderful for the kids. I may have jumped in 5 or 6 times per year. I never found that the discomfort of having water get in my eyes and up my nose, or the initial temperature shock, were enough to warrant the meager benefits. I don’t miss swimming. (Please don’t send me links to handicapped swimming sites.) 

4. The bullshit part of my career 

As I mentioned above, having a career was a partially rewarding experience, which I partially miss. However, I cannot count the times that I had to deal with absolute bullshit at work. The problem was not tyrannical, immediate supervisors. Most of my bosses were excellent mentors and all-around good eggs. But that didn't stop them from asking me to do stupid things, for stupid reasons. More often than not this was the result of upper management feeling the pressure to meet month-end, quarter-end, or year-end goals. Satisfying this urge usually required the temporary suspension of sound business practices (like customer satisfaction). Once you start playing this game it becomes self-perpetuating, an endless loop of jumping through hoops. 

Fulfilling? Not so much. (Please don’t send me links on how to overcome my disability and reintegrate into the workforce.) 

For my healthy readers, what do you think you would miss most if you had MS or a similar disease? For my disabled readers, what is it that you already miss? What don't you miss?

Note: My longtime readers may recognize this as similar to a post from October, 2010. I made significant updates and improvements, however.

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.