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Friday, September 30, 2011

The Evil Eye

We have a television. We even have it dominating the living room, that hallowed space in large modern houses that often sits in pristine elegance and neglect. No relegating this essential appliance to the dark basement or a messy family room for us.  We tried that a long time ago when we first moved into our current home which, at the time, had a room we proudly referred to as our family room, our first ever (it has since been transformed, with the addition of a couple of walls, into a bedroom for Michael and a hallway).  It was really nothing more than a mud room, a very large open space across which children would fling their messy boots and shoes as they rushed in through one of the two doors, missing every mat and shoe rack intended for their footwear.  This room was also the toy room which meant Thomas the Tank Engine chugged his way around couch and table legs, and Lego blocks and small metal vehicles dug sharply into bare feet. We had one futon couch for the six of us and two cats to cram ourselves onto and pretend we were actually comfortable. Bonding. Meanwhile, an enormous, nearly empty living room sat unused, somehow raised to the status of the room for entertaining and quiet reflection.  But we never entertained, at least not in any kind of sophisticated and genteel way, and no one ever reflected quietly in our house, at least not on the main floor. I will remind you that we had FOUR children, and even though our three daughters were pretty civilized, the same could not be said of their little brother. Unless we invited our own extended family or families with equally unruly little boys, we almost never entertained. Nor were we ever asked out, now that I think about it. So it was after a few years of discomfort and squabbling that I made a momentous decision: the television is going into the living room. More space, better couches, still lots of toys (they always seemed migrate with the crowd) but happily comfortable.  We have never looked back.

We have graduated from a tiny screened contraption to a much larger gizmo, not big enough for the avid sports fans in the family but a reasonable compromise between the bigger-is-better school of thought and the lone voice of moderation and fear that our lives would be taken over by the Evil Eye.

And guess what? They were, taken over that is.  It was a gradual, insidious process as children wheedled and whined over the years, breaking down my rather severe restrictions. With the television in the living room and essentially in the centre of our open concept house, it was now inescapable, so in order to remain sane I had to impose harsh parameters. At mealtime, the television was always off, still is.  I cannot bear the racket while I try to eat, even if the silence emphasizes the complete lack of conversation between the two of us now.  Only on rare occasions were meals allowed in front of the television. Also, certain shows were taboo, though over time even those restrictions were lifted as I came to appreciate the irony of shows like the Simpsons. Instead of listening to the characters' voices on the television while I ate, my children treated me to Simpson quotation contests.  For several years my children only seemed able to communicate with each other through the words of Bart and Lisa Simpson.  Perhaps it was payback for the original ban imposed on the show.

We have now evolved to the television blaring ALL day, save mealtime and those blissful early morning and late night hours when I find myself alone in the house with Michael in bed.  I have learned to enter my Zen state as he whiles away the hours watching sports shows and horrendous documentaries about air crashes and boat explosions which curiously don't seem to bother him. My standards have flown out the window. And when you can't beat 'em, you might as well join 'em. To that end I have discovered a number of shows I really like (I'm partial to movies, murder mysteries and law shows) and, as long as I am stretched out on the couch with my feet resting on Michael's lap or at least touching him somehow, he is perfectly happy no matter what we watch, unless it freaks him out. If that happens I give up and switch to rugby or soccer or hockey or football or darts or poker (I had no idea that one was a "sport") and retreat to do something else, leaving him glassy eyed or peacefully dozing in front of the hypnotic screen.

So imagine my surprise when I had to interrupt an entertaining telephone conversation with an elderly friend who was regaling me with hilarious tales of her experiences in her new retirement residence. Michael was putting on his shoes, not glued to the television as always. It was nine o'clock and dark, not to mention very close to the ebbing of his mobility with end-of-day akinesia.

"Where are you going?" I asked with my hand over the telephone receiver.

"To get a movie," came the reply, his body now poised to step out into the darkness.

Oh. I said a hasty good-bye to my friend. The closest movie store is about two kilometres away, a short drive but an impossible excursion so late at night.  Getting there would be no trouble, but negotiating through the narrow aisles of the store to the back room where the movies are displayed an impossibility for Michael at this time of night.  I suppose I could have left him in the car while I dashed in to find the movie myself ("Blackhawk Down" was for some reason the desired film) but I wasn't feeling very charitable at that moment. Besides, the choice of film was completely inappropriate for my husband's unstable brain at such a late hour; he has seen it before and it unnerved him. Also we have Apple TV, a generous Christmas gift from the kids aimed at eliminating this problem by making movie rental a couple of simple clicks on a tiny remote control.  I suggested we look first to see if it was available through this medium, hoping by making this suggestion it might derail the project.  It did. He forgot all about it.

But what was so ironic about this whole episode was Michael's unusually articulate and vociferous assertion that he never gets to watch what he wants. It was a deluded declaration of annoyance at my perceived control over the television, which, I suppose, has some truth since, without my intervention with the now very complicated remote control, he would never watch anything. I had to suppress my amusement as I distracted him with a hockey game, but as deluded as it was, it was nice to see a rare flash of independence and annoyance. Perhaps this was a statement of his resentment of the need for my entire control over his life, indeed the disease's control over both our lives.

Too bad we can't just turn that off with a  simple click of the remote control.

Friday, September 23, 2011

A Fit of Pique

Red hot anger rarely boils up in me and even when it does it is always short-lived, usually unexpressed. I am learning not to burden my husband's tenuous grasp of life's complexities with my pent up emotions, especially wrath.  It serves no useful purpose.  Most of the time I can explain it all away by consulting the calendar and realizing it is that proverbial "time of the month" when most women feel like eating their young and sacrificing their husbands.

I find it odd how my ire can always be triggered by some perceived injustice that happens to surface right at that most vulnerable time of the month.  Is it that I just overlook these things the rest of the time, taking it all in my stride, blind to injustices and inequalities, or is it my hormone-addled brain overreacting to the normal day-to-day frustrations?

Tonight the trigger was my still unwell, anxious mother-in-law who was worried that her holidaying son and his wife were not yet home from their two week jaunt overseas.  I had to be the reassuring, calming voice, as always. It was her second call, to announce happily that they were safely home, that blew my gasket. After the call, I lay on the couch simmering from the frustration of always being the reliable one who never leaves her post. Michael was completely unaware of my turmoil, I hope, as was his mother. He wandered around in his back-to-front shorts muttering something I couldn't understand, then rifling through my phone book for mysterious phone numbers. I tried my best to ignore him until burnt toast and spilled juice jolted me off the couch and into action. A slammed plate and glass on the counter did nothing to alert him to my anger which I realized was aimed at myself for always being reliable, cheerful and probably very dull.

I'm over it now. As always, it was a quick snit with no one the wiser.  I can't help myself; I'll continue to be that boringly dependable one who dreams of vacations but never takes them because there will always be someone who needs care. On the whole, I'm a pretty contented soul despite the holiday deficit and the occasional fit of pique. And so far my offspring remain unconsumed and my husband walks this earth in blissful ignorance of his wife's occasionally murderous sentiments.

Sunday, September 18, 2011

The Sound of Silence

The human heart must be made of uncut diamond. Otherwise the events of the past several years would have shattered mine many times over. The losses pile up. I marvel at the toughness of my heart and wonder what can ever make it crack. If anything should threaten my currently healthy, happy children, that would be a force likely to pulverize earth's hardest substance. But so far my heart remains intact.

That doesn't mean that an occasional fragment isn't chipped off now and again. With each loss, my heart shudders mightily from the force. And witnessing my husband's suffering means daily chiseling. 

Last night sleepiness overcame me.  But it was the good kind. I was physically tired after a rare day out with friends, hiking in the Gatineau Park and feasting on a pot-luck lunch in the late-summer sunshine.  Divine. I was lobbying for an early bedtime, so Michael was ready well before the usual ten o'clock.  But we had left the television on and tuned to a 1969 documentary on Simon and Garfunkel, those balladeers of our youth, so after teeth-scrubbing and pill-popping, Michael drifted back into the living room. He sat perched on the coffee table right in front of the television. I curled up on the couch, trying to stay awake but drifting peacefully to the sounds of this famous duo performing their songs. 

Then I opened my sleepy eyes to see my husband intently watching the screen and noiselessly mouthing the words to "The Sound of Silence", tears in his eyes. My heart lurched; a new facet lay exposed: 

Hello darkness, my old friend 
I've come to talk with you again 
Because a vision softly creeping 
Left its seeds while I was sleeping 
And the vision that was planted in my brain 
Still remains 
Within the sound of silence 

In restless dreams I walked alone 
Narrow streets of cobblestone 
'Neath the halo of a street lamp 
I turned my collar to the cold and damp 
When my eyes were stabbed by the flash of a neon light 
That split the night 
And touched the sound of silence 

And in the naked light I saw 
Ten thousand people, maybe more 
People talking without speaking 
People hearing without listening 
People writing songs that voices never share 
And no one dared 
Disturb the sound of silence 

"Fools", said I, "You do not know 
Silence like a cancer grows 
Hear my words that I might teach you 
Take my arms that I might reach you" 
But my words, like silent raindrops fell 
And echoed 
In the wells of silence 

And the people bowed and prayed 
To the neon god they made 
And the sign flashed out its warning 
In the words that it was forming 
And the sign said, "The words of the prophets are written on the subway walls 
And tenement halls" 
And whispered in the sounds of silence

Saturday, September 17, 2011

Silence is not Golden

Test results are in.  The laboratory gods have spoken.  There's nothing wrong with my husband. Well, you know, beyond the obvious.

Michael's thyroid is apparently fine despite the swelling. There was no insight given as to why this gland in the neck is bigger than it should be, just that the blood tests showed nothing.  Kidneys, liver and everything else that could be studied - all working fine. Therefore no need for further investigation. The only slightly imperfect result was a low-normal reading for Michael's vitamin B12 levels but not enough to cause any alarm.  I could put him on a supplement, or not. Up to me. When I asked if there might be any connection between the B12 malabsorption and the thyroid, the answer was an abrupt no, even though some of the internet links I found do make the connection.  I understand that internet sites are not always reliable and need to be corroborated, but it is an interesting link nonetheless. I will continue to watch the thyroid closely.

I know the system is overloaded, and where there isn't any real smoke, no need to bring in the fire brigade. But I am left with a lingering feeling that things aren't right. Mind you, as I have said repeatedly, Parkinson's disease is an all-encompassing disease that seems to affect every organ in the body, though so far none of his seem to be seriously compromised. Except maybe the heart, though I suppose that could be mutually exclusive to the PD.  All that is happening, perhaps, is just the progression of this nasty disease.

I have learned through years of caring for sick parents and my husband that medicine is an inexact science despite confident assurances otherwise from the good people in the profession.  I am finding, as I become more confident myself in challenging the doctors when pronouncements are made, that most are willing to admit they don't know or that they are struggling with a difficult choice of treatment.  Recently my mother-in-law suffered a mysterious attack of pain to her right thigh that rendered her incapable of walking. It took days of hospitalization and oodles of tests (she claimed that "gallons" of blood were drawn from her frail body) to conclude days later that she had suffered a massive spontaneous rupture in her leg caused by raised levels of the powerful anticoagulant Coumadin in her system.  She was given many blood transfusions, vitamin K injections, and the drug was eventually withdrawn in an effort to stem the alarming bleed.  It is more than three weeks later and she still sports an enormous ugly, swollen bruise that stretches from hip to ankle and is very slowly getting back on her feet.

What was interesting to observe, when I had the good luck to be present when the parade of doctors paid their visits, was how uncertain they all were on how to proceed. But the uncertainty was only admitted when I pressed for answers.  Their dilemma was this: to keep her on the drug meant risking another bleed; taking her off might trigger a fatal clot. Their job was one of risk analysis, a tricky one at best. For a few days they were back and forth on their course of action and in the end opted to resume the Coumadin, assessing that to be the less risky course.  I sympathized with these doctors who were trying their best to make the right decision. I was amazed at one doctor's honesty when I challenged her by suggesting, after the frustration of listening to the team's vacillation over several days, that their decisions were much like tossing a bunch of balls in the air and whichever one they caught was the decision of the day. She admitted that was a pretty accurate assessment in this case.

So medicine is an imperfect science based on the vast but still very incomplete knowledge of the human body. Medical folks do their best in difficult circumstances but have to rely on sometimes spotty information from the patient whose condition, fear and anxiety may render him/her incapable of giving a complete picture. Often they are only making an educated guess, I have discovered. Their tests, of course, help considerably in the process of diagnosis but are by no means the whole picture. In my mother-in-law's case, for example, no test seemed to show the cause of the terrible pain in her leg.  At first it was being dismissed as an old woman's confusion over a forgotten fall, despite the absence of telltale bruising on Coumadin-sensitive skin in the first few days. When I realized this attitude prevailed, I told a staff member that if this still very sharp, lucid woman had said there had been no fall, there had been no fall, and no, she was not exaggerating her pain; I speak to her at least once a day and know very well how clear, aware and stoical she is despite her advanced age.  She has a better memory than I do. Then as the days wore on, the terrible bruise emerged giving them the indicator they needed, the indicator that no sophisticated tests could reveal and proving that Michael's mother hadn't been imagining it.

This is where a knowledgable advocate can be so helpful. This is why I continue to do my homework whenever a new symptom arises.  I may be way off base and exaggerated in my own amateur assessment of what is happening to Michael on any given occasion, but as the person who knows him best and is most acquainted with his experience with this disease (second to him, of course, but his powers of articulation are gone), I am in a unique position to offer much insight to the doctors, saving them a lot of time. It is important for the advocate to feel confident enough to put forward respectful observations and ideas, no matter how silly it may feel. This isn't about my ego so it doesn't matter if I get it wrong. My job is to observe closely, toss around ideas, make connections, then put them out there to the people who know better than I.  Then my job is to listen carefully to the diagnosis and treatment instructions, and protect Michael's right to humane considerations. Oftentimes I have guessed correctly what ails my husband; often I am way off base. But I'd rather be wrong than silent.

What frightens me more than anything is the realization that many, if not most, people do not have advocates when they are seriously ill and cannot speak for themselves.  All of us, in these times of beleaguered medical staff and overcrowded hospitals, need someone to stand up and speak out for us so we are taken seriously and don't get lost, forgotten or ignored in the system.

Sunday, September 11, 2011

The Patchwork Quilt Disease

Throughout the many years of Michael's illness, seventeen since diagnosis, I have been learning steadily about Parkinson's Disease along with all the complicating illnesses Michael has suffered. It feels as though I am very slowly working on my medical degree acquired through the internet and my dog-earred Merck manual. It's like a patchwork quilt, each calamity and complication a new colour I add to the work, none of it seeming to connect until I stitch it all together into the big picture. Michael has truly been a study of diversity of ailments.

The latest piece being added is a chapter on the thyroid gland. I have to credit my friend who hadn't seen Michael in several weeks but noticed on a visit last weekend that there is a swelling in Michael's neck.  I hadn't seen it at all. Most days my head is down just getting through the rigours of life with a seriously disabled person and it worries me that I'm not seeing things anymore. Nevertheless, my friend did and I'm grateful for that.

On inspecting Michael's neck right after my friend left, I discovered a butterfly-shaped swelling below his Adam's apple. I felt my own neck to compare. Definitely a considerable enlargement in his neck. I hit the books and the internet, knowing only that the thyroid gland is situated in the neck and that hypo- and hyperthyroidism are associated conditions but I knew very few of the symptoms.

Now it turns out that days before this discovery we had visited Michael's neurologist.  When I told him about Michael's plummeting blood pressure and steps I had taken to reduce his heart medications, he knitted his brow and filled out a requisition for a series of blood tests, saying that perhaps the kidneys need checking, among other things. When the visiting nurse arrived last week to administer Michael's monthly blood test for agranulocytosis, a rare but severe side effect of the anti-psychotic medication Clozaril, I handed her the requisition for the other tests. I showed her the swollen thyroid. She noted that the doctor had ordered a number of tests to be run, including one for the thyroid.  Aha. Maybe the Good Doctor is already on to something without having been told about this new discovery.  That's why these guys go to Med school.

We have had no results back from the tests but in the meantime I hit the information highway. Various lights have gone on in my brain as I realized that this could have been an issue for a while, though I'd like to think that with all the bloodletting Michael has endured over the past few years, somebody would have discovered this if it had been a long-standing problem.

Among the various diseases associated with the thyroid, two basic ones exist:  hyper- and hypothyroidism. And these afflictions may not be easily discovered unless you have a sharp doctor who can piece together your symptoms. Many other diseases can mask this problem, including Parkinson's disease, I discovered. Conversely, a thyroid condition might mask underlying Parkinson's.

Hyperthyroidism, which very simply is where too much thyroid hormone is being produced, is characterized by fast heartbeat, high blood pressure, moist skin and increased sweat, shakiness and tremor, nervousness, increased appetite with weight loss and confusion just to name a few listed in my trusty Merck Manual.  Hypothyroidism, too little thyroid hormone, has an equally long list of symptoms: slow pulse, hoarse voice, slowed speech, constipation, confusion, depression, dementia, weight gain, loss of hair, especially eyebrows. You can see by the italicized symptoms a possible overlap with Parkinson's symptoms.

There is no doubt that Michael has Parkinson's Disease.  But the overarching nature of this disease that affects the entire body so completely makes it the big bully that pushes out the little guys and always cries out for attention. Symptoms that I have noticed lately, such as an annoying dry cough throughout the day, but especially at mealtime, and ridged fingernails, I have simply put down to the mysteries of PD and have discounted them somewhat. (Swallowing can be a serious problem for PD patients leading to weight loss for some.) But according to a couple of websites, these two symptoms might instead be an indication of a malfunctioning thyroid, namely hypothyroidism. Michael's overwhelming sluggishness, his very low blood pressure and at times low pulse rate might also be part of a thyroid problem.

We will find out soon enough whether the swollen thyroid gland is cause for concern and treatment. It will be interesting to see if there is improvement in any of Michael's symptoms that we have all just assumed were part of the Parkinson's quilt. Whatever the results tell us, if anything, my knowledge continues to grow.

Monday, September 5, 2011


It was a long week of visits to Michael's hospitalized mother whose condition steadily worsened until mid-week when things started to turn around.  She is by no means cured or even back on her feet and can anticipate many more days in hospital, I fear, but at least the concentrated worry is over.  For now.

Michael has fared very well through it all, enduring several visits over the week.  After our first successful foray to the emergency ward last Sunday, I have boldly dragged him along on almost all of my visits. That way I haven't needed to use up my precious respite hours.

There is a long uphill climb from the parking lot to this hospital's entrance. One day, a highly observant individual, on seeing me push Michael up this hill in his wheelchair, helpfully commented on how steep an incline it is. I responded with a polite but, I hope, ironic thank you. So Michael's job was simply to sit still, remain calm and not stir up trouble, all of which he accomplished admirably. The rest I could take care of.

By week's end two children arrived home, one with a rather large dog in tow that he had been dog-sitting for a couple of weeks at his home in Toronto and was returning to its owners on Sunday night. This boisterous horse-sized creature bounded into our house wreaking havoc with my old and grumpy dogs. At least, that's how they saw his visit, I'm sure.  He was well behaved and obedient on the whole and listened astutely whenever he was scolded by an annoyed elder. He'd submissively take up a resting spot well away from them for an hour or so until he thought he could try pestering them again.  He was to be credited for his persistence.

With my mother-in-law's care, the arrival of this gangly energetic dog, two adult offspring dashing in and out and, of course, my husband's ongoing needs, I was truly distracted by Sunday night.  And tired.  A couple of sleepless nights, one nursing a sick and frightened dog during a noisy thunderstorm, saw to that. So when it was time for Michael's seven o'clock dose of Parkinson's meds, it seems it all caught up to me.

Michael's various medications are spread throughout the day over five dosing times.  But the plastic container into which I divide up his weekly meds only contains four little boxes per day. The fourth box contains both his seven o'clock PD drugs and his bedtime pills which I carefully separate out into an egg cup for later. This bedtime collection contains his cholesterol medication, any laxatives he is currently taking, his anti-anxiety medication Clonazepam and his anti-psychotic medication Clozaril. The last two ensure a peaceful night, usually knocking him out within minutes but within half an hour at the latest.

Last night I administered Michael's seven o'clock dose while shooing the visiting dog away from the butter dish he was happily licking, and carrying on a conversation with my son who had just walked in the door. Michael settled himself in front of the television for yet another night of viewing.  Ten minutes later I gasped. There on the counter, next to the well-licked butter dish, were the untouched Parkinson's meds. I rushed into the living room to check the other egg cup, hoping that I had dreamed the part where Michael had swallowed his pills.  No such luck.  Empty egg cup.

Great. Seven o'clock and Michael is doped up for the night.  Our son went out with the offending dog and I took my usual position next to my husband on the couch.  As the minutes wore on, Michael sank deeper and deeper into me with his head resting alongside my outstretched legs.  He had a bowl of cherries in his lap that were being dropped ever so slowly one by one into his mouth, Roman orgy style. Then equally slowly he was removing the pit and stem and dropping them heedlessly onto the floor. He drunkenly got up to use the washroom and fell like a rag doll six times in the six steps needed to reach the room, then a loud crash as he entered it. Another six falls back to the couch.  I held on until nine o'clock with him again safely slumped against me on the couch, but then I decided to pack him into bed. My stoned husband was not taking in anything by this point. Nor was I after a fairly sleepless weekend.  To avoid further injury, I loaded him into his wheelchair and got him ready for bed, no easy feat with a drunken sailor.

I fell into bed moments after his collapse and was asleep instantly. A stupid mistake but I was too tired to feel badly. Obviously there had been too many distractions, but at least I got an early night out of it.