Tuesday, January 28, 2014

Life Is a Little Better This Week

Toilet Spy. Urinal in Berlin
(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.
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Tuesday, January 21, 2014

Intrathecal Methotrexate – Update

Chemotherapy
Chemotherapy (Photo credit: franziskas garten)
Yesterday I received my 12th infusion of intrathecal methotrexate. The process went smoothly. My oncologist is really getting the hang of it.
I have this treatment administered at a cancer infusion center. When I'm sitting in the waiting room, I wonder what the cancer patients make of me. I have rosy red, full cheeks, so I don’t look like I’m going through rigorous chemotherapy. But, I am obviously not a picture of health either. As I go from the waiting room to the special bed where I receive the spinal infusion, I pass by about 25 people sitting in recliner’s, having their particular brand of chemotherapy dripped into their veins. Do they think I have an even worse kind of cancer because I have to go to the bed section instead of the recliner section? These things are not important for me to know, yet I do wonder.
This treatment seemed to be working for a while. But if you read my end-of-year summary from a couple of weeks ago, it doesn’t seem to be working anymore. So why am I still taking intrathecal methotrexate?
I spoke with my neurologist about a week ago and explained to him that while I was on the treatment in 2012 I didn’t experience any disease progression. However, in 2013 the disease progression is back, and with the same veracity as before I started intrathecal methotrexate. Yet, there is no other treatment that we would like to try. There is no drug in the on deck circle. So we’re going to be extra patient with intrathecal methotrexate and give it another six months – three more treatments. If my disease still seems to be progressing at the standard rate, then we’ll stop the program at that point.
Assuming intrathecal methotrexate is no longer working, what happened? I can think of three possibilities:
  1.  Intrathecal methotrexate wasn't the real reason I plateaued in 2012. There is a natural ebb and flow to even progressive MS, and I just happened to be taking this treatment when I happened to be in a natural leveling off point in the disease progression.
  2.  I succumbed to the placebo effect. I didn’t really plateau in 2012; I just convinced myself that I did.
  3.  Intrathecal methotrexate is why I plateaued in 2012, but for unknown reasons it has simply stopped working.
Of these possibilities, I find item 3 the most likely. I don’t think it was the placebo effect because I’m a natural skeptic, and my wife corroborated my observations. The data that we used to verify the plateau was objective. I don’t think it was a natural plateauing action either, but I can never be sure.
I find it unlikely that intrathecal methotrexate will resume its positive effects on my progression, but stranger things have happened. I’ll update you again in the summer, if not sooner.
Come on stem cell treatments, I’m growing old waiting on you!

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Tuesday, January 14, 2014

Some What-If Scenarios

English: Titanic is sinking in Mime Misu's In ...
 (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?


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Monday, January 6, 2014

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.

Wednesday, January 1, 2014

Code Red

Blue alarm clock
(Photo credit: Wikipedia)
The bedside clock read 6:11 AM, and my brain had engaged, so there would be no falling back to sleep. Being the adequate husband that I am, I didn’t forget that this was Kim’s birthday – her 49th.
Almost every morning for the past several months I have needed Kim’s help to transfer from the bed to my wheelchair. Once in a while I’ve been able to complete this task myself, but it’s become rare. Given that this was her birthday, however, and she seemed to be sleeping so peacefully, I thought I’d give it a try.
I was pleasantly surprised when I was able to swing my feet off the bed and sit up with ease. The next step was for me was to lean forward as far as I could, almost kissing the wheelchair seat which was directly facing me. I marshaled the collective strength in my arms, my torso, and my legs, and in a coordinated if not graceful movement, I raised myself upward. I was standing, so to speak, with my knees against the front of the wheelchair. One hand was gripping each wheelchair arm rest. I took a quick breather and prepared for the grand finale.
This culminating movement requires me to pivot 180° counterclockwise and gently fall back into the wheelchair. In perfect synchronization with the body pivot, I have to move my right hand to the opposite arm rest and move my left hand to the bed. This may seem like a relatively complicated and risky maneuver, but when I’ve made it this far in the process I’m almost always successful with the final step.
I’m not even sure where the failure occurred. It all happened so quickly. I may have missed the bed with my left hand or missed the armrest with my right. Perhaps my legs got twisted or my knees buckled. No matter the cause, I found myself sinking into the gap between bed and wheelchair. I was as helpless as if I had stepped in quicksand on a 1970s TV show.
Front view of a Hoyer lift, used for lifting p...
Front view of a Hoyer lift, used for lifting patients into/out of bed. (Photo credit: Wikipedia)
A fall to the floor is not a good thing. First, I can injure myself. Second, even if I stick my landing (all 10.0’s except a 9.9 from the Russian judge) there is no easy way to get me up off the floor. Our recovery procedure calls for Kim to use an old, portable Hoyer lift that we inherited from my quadriplegic mother. We’ve only done that once before, and it wasn’t pretty.
But on this, Kim’s birthday morning, I hadn’t sunk all the way to the floor yet. If she could help me quickly enough, my transfer might be salvaged, although Kim’s blissful sleep couldn’t.
I yelled, “Code Red!”
Kim groggily responded with, “What?”
Only half awake, she had no idea what unintelligible sounds I was assaulting her with in the early morning darkness. Unwilling or unable to alter my communication strategy, I mindlessly repeated , “Code Red, Code Red!”
If time had not been of the essence, and copious amounts of adrenaline had not been coursing through my veins, I may have used my words to remind Kim of the meaning behind Code Red. A couple of months ago I was transferring from the shower seat into my wheelchair and I was having difficulty, so I called for Kim. I heard her talking to someone on the phone in the next room. After 30 seconds or so I determined that she wasn’t responding to my first call, so I added some urgency and volume to my request. “Kim!”
“Oh,” she said. “I heard you the first time, but I was on the phone and didn’t realize that it was urgent.”
Obviously, we needed a better system – one that didn’t rely on her interpretation of the level of panic in my voice. Here’s what we came up with. If I need Kim only at her earliest convenience, I will simply shout her name. If I need her with some urgency, but it isn’t a critical situation, I will shout, “Kim, code yellow.” When she hears this she will calmly, but without undue delay, stop what she is doing and walk over to assist me. If it is a real emergency, and I’m in danger of falling or in some way becoming injured, I need her to drop what she’s doing and run to my aid with reckless abandon. In this case I will shout, “Code Red!”
It seemed like a workable system. But then, as good luck would have it, no Code Yellow or Code Red situations arose for a long time- until Monday morning at 6:11 AM.
Finally, my urgent calls of “Code Red!” began to register in Kim’s head, and she sprang to action. With athletic prowess, she slid across the bed and wriggled one leg and one hand underneath me, and prevented me from falling further. She and I then began to work in unison to overcome gravity, maybe a quarter inch at a time, until my butt was on the wheelchair seat. “Great save, Kim!” I said in thanks.
I think this incident left a sufficient imprint in Kim’s mind so that when I invoke Code Red or even Code Yellow in the future, she’ll react immediately. In that sense, this near miss wasn’t such a bad thing after all.
Maybe part of the problem is that we need more creative terminology, instead of Code Red and Code Yellow. Suggestions?
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