A Medical Interlude

Lately, Michael's blood pressure has been playing a dangerous game of yo-yo with wild ups and downs. I usually take a reading a few times a month at different times of the day, then take an average of the readings to make sure that overall he is within the normal boundaries.

Michael was diagnosed with hypertension more than thirty years ago, before I met him.  A battery of tests was performed showing no definable cause.  He refused pharmaceutical intervention at the time, but agreed to be monitored closely for a while.  With dietary changes, such as a reduction in his salt intake, things leveled out.  It was decreed that he probably suffered from white-coat syndrome since his blood pressure normalized when he was able to visit the less threatening nurse at work for a few months, rather than the doctor's office.

Over the years of our marriage, Michael was cavalier about his health, rarely visiting a doctor, so the blood pressure went unmonitored.  I was aware of the situation and did my best to provide low sodium, low cholesterol foods. He seemed to be healthy - before the diagnosis of Parkinson's disease in 1994, that is.

Then in 2006 there was the mild stroke.  When his blood cholesterol and blood pressure were assessed, both were found to be high, so medication was prescribed.  It was at this point that we became more serious about monitoring the blood pressure, so a home kit was purchased. Medications were adjusted accordingly, especially after the heart attack in February 2007.  At that time, drugs for angina were added, and medication doses remained stable until recently.

I started noticing a drastic drop in his morning blood pressure readings, so, in consultation with the doctor some months ago, I reduced the diuretic he was on by 50%. Things improved slightly, but orthostatic hypotension was becoming a serious problem.  For somebody with mobility and stability issues already, the added instability caused by this drastic reduction in blood pressure on standing can be serious.

But lately the daily readings have been extremely erratic, occasionally dangerously high (systolic in the low 200's), at other times bottoming out to 75/58 or lower.  The resulting unsteadiness with the very low readings was alarming, not to mention the accompanying risk of dangerous cardiac issues. Another call to the doctor.  My instincts were to eliminate the diuretic and reduce the drug Amlodipine (a hypertensive and angina medication) by 50%.  The doctor concurred.  Immediately, the mild swelling of the feet disappeared, a common side-effect of the Amlodipine, I discovered.  Also the blood pressure readings rose to a more normal and fairly consistent 110/80.

The doctor mentioned that blood pressure (heart functioning) can be impaired with dementia. Curious, I started researching and discovered an interesting study in the Journal of Neurology, Neurosurgery and Psychiatry, vol. 78(7); July 2007, entitled "Autonomic dysfunction in dementia".  In the study, patients with Alzheimer's disease (AD), Parkinson's Disease with dementia (PDD), dementia with Lewy bodies (DLB: a more severe and fast advancing variation of PD), and vascular dementia (VAD: caused by a series of small strokes) were studied.

The results were interesting: In all cases some autonomic dysfunction occurred, but it was particularly common among Parkinson's and Lewy body dementia patients, with the greatest severity seen in those with Parkinson's disease. This means that all of those bodily functions that function "largely below the level of consciousness" (Wikipedia) such as heart rate, blood pressure, digestion, respiration rate, salivation, perspiration, dilation of pupils, urination and sexual arousal, can be severely impaired. The study found PDD and DLB patients had considerable cardiovascular autonomic dysfunction, with PDD showing "significantly more impairment than DLB in some autonomic parameters", and VAD and AD showing limited evidence of autonomic dysfunction. However orthostatic hypotension was common to all.

The autonomic nervous system is divided into two subsystems: parasympathetic and sympathetic. The parasympathetic nervous system (PSNS) controls "rest and digest" activities such as salivation, lacrimation, urination, digestion and defecation. The sympathetic nervous system (SNS) is responsible for the stimulation of the activities surrounding the fight or flight response (Wikipedia).

I have known about the all-encompassing effects of this disease on the body, but this study gathered together all of Michael's symptoms under the one umbrella of a dysfunctional autonomic system that the other diseases do not display, at least not as severely. This explains the constipation, the urinary incontinence, the wild blood pressure and heart rate irregularities, and the drastic breathing problems, all seemingly unrelated but now clearly part of a single malfunctioning autonomic system. I am guessing it might even be responsible for much of the anxiety and extreme fight or flight responses Michael experiences at times.  The brain is spinning helter-skelter, with none of its usual controls in place. It makes me wonder if the early blood pressure issues that were maybe caused by anxiety, in fact most of his seemingly unrelated symptoms over the years, might be directly attributable to the Parkinson's disease.  One thing is clear: the more we learn about this disease, the easier it will be to predict as we become aware of early signals.  For example, it is already well known that the loss of sense of smell together with constipation and depression might be an early indication of PD even before any motor degeneration is evident.

I am guessing that as this disease advances, we can have every reasonable expectation that all of the systems that have already shown to be dysfunctional will continue to degenerate, especially as we are seeing fairly rapid cognitive decline now; a new development, for instance, is that he must now be reminded how to take his pills each time.  Careful monitoring of medications is essential, not because we can fix these problems but we might be able to reduce their severity by removing those drugs that will exacerbate the lowering of the blood pressure and the risk of even more severe falls, "a major cause of increased morbidity, institutionalization and mortality" (JNNP, July 2007).

Forewarned is forearmed, I suppose.

High Fidelity

"I'm afraid you will leave me," was the surprising and unusually articulate response to a probing question I posed yesterday to determine whether there was any definable reason for Michael's increased withdrawal and fatigue.  Frankly, I expected a more mundane answer: a virus was lurking or his stomach hurt. But I have learned that, even if it is something as simple as a mild cold, that can be enough to unhinge his thinking and push him into the depths of paranoia and delusions. And render him oddly articulate.

I reassured him, somewhat sourly and not as gently as I should have, that I have no intention of going anywhere. I have stuck it out this far, right? Besides, I'm not the one who is leaving. He is. Has. The Michael I knew and married left me a long time ago for the demanding and unforgiving new mistress that is Parkinson's Disease.  I have simply been relegated to the post of Chief Cook, Nurse, Housekeeper and General Factotum. On occasion the old Michael will emerge, but that person has almost completely gone now and only surfaces unexpectedly, rarely and usually in the company of others, not just for me.

There was one occasion, in the throes of one of his many psychotic crises, that he actually accused me of having an affair. If he hadn't been so ill, I would have been highly offended but instead I let out a loud guffaw at the silliness of such an idea.  Even if I wanted to, when on earth would such an occasion present itself, let alone a willing partner in crime? My thirty-one years of marriage have been devoted to my children and my husband - and happily so - but it has been a busy life, affording no opportunities for clandestine affairs, especially during the past two years of very intensive care.

But his comment, quickly forgotten by him, rattled around in my brain long after.  Michael and I, over the years, have had an uncanny connection; finishing the other's sentences, sensing things before they were articulated. Michael even went into "labour" with me the first time. Most long-married couples experience this, I am sure. I don't think I am particularly good at hiding my feelings either. Perhaps everyone can read me like a book. Nevertheless, I started to think about it and felt twinges of guilt because recently my mind has been stepping out.

Lately, as reported in an earlier post, I must engage my fantasy world to assuage certain longings. During my conscious, waking hours, I can easily summon the ghost of my relationship with Michael. But it is during my nocturnal subconscious wanderings that I am seeing the change. Where, until recently, my dreams only ever involved my husband, now I am summoning other faces and bodies, some achingly familiar. I awaken feeling sad, and though I can in no way control where and with whom my subconscious decides to travel while I sleep, I am still left with a sense of my own betrayal. I miss intimacy terribly, often painfully, but I know in my heart that I would never consciously betray my bonds with my long-suffering Michael. Only in my dreams am I doing that.

So, rather than Michael merely expressing his own dark irrational fears, perhaps he is still finely tuned to me, sensing, at least on a subconscious level, that I have already taken a dangerous step away from him. And maybe I am preparing myself for the ultimate separation.

Midsummer Madness

Bold steps were taken this weekend.  Bold steps out the door and down the highway.

The approach of summer had had me worried before the season even got going.  Dread of long, quiet, hot days imprisoned at home stuck in my heart.

Michael's condition has me more alert than usual these days.  There have been some dramatic plunges and peaks in his blood pressure, making me wonder how on earth he functions even the little bit he does. I have no real reason to suspect there is anything wrong, anything more serious than the usual, that is. Just misplaced worry and anxiety perhaps, leaving me feeling mildly manic.

So this week I got tired of my nurse's vigil. When a discussion with the In-laws arose about how to celebrate Michael's mom's 87th birthday, my usual tendency to take a cautious and isolationist approach by offering to have a quiet tea here took a back seat, and I decided I wanted a fast drive, somewhere, anywhere, instead. Michael's brother lives on the other side of town, a 45 minute drive away if the traffic is good. But a pool party was on offer and for once I agreed.  What the heck. Even if the worst thing happened, how much worse could it be away from home and in another province?

Caution was thrown carefully to the wind: wheel chair was stuffed into our tiny car; bathing suits and towels were packed (ensuring that a floatation device existed at our destination so my husband wouldn't drown), drugs for twenty-four hours (you never know), a bottle of water, extra diapers, change of clothes and bandaids.  Sound familiar to any of you who have traveled with children? With all that taken care of I was ready for a wild and wacky time.

Our arrival at the pool party (which was a very small gathering of family) was spectacular, one of Michael's best. He lurched his way down a narrow path to the back of the house, falling hard on the stone and ripping open his knees. Nothing unusual in that. The path ended at a gate that opened to the beautiful patio and pool in the back. Michael negotiated the gate well enough and I gave a premature sigh of relief, thinking we were home-free for this stage at least. With a chair in his sights, he lunged toward it but fell into the small glass-topped table around which everyone had gathered. Sangria-filled glasses flew free and smashed onto the patio with the table wobbling precariously, threatening to tip over. Chairs collapsed as Michael fell to the ground, spreading his blood liberally around.  Shocked faces from family members who never see these displays. I set to work bandaging knees and mopping up blood, quietly satisfied that they were getting a look at how life really is.

We never made it into the pool. Too much effort. Michael's meds ran out quickly so he sat rigidly and silently in a chair, blank-faced and withdrawn. I swilled what I thought was alcohol-free Sangria only to find my head spinning after a sip or two, my first taste of alcohol in a very long time.  I discovered that alcohol makes me very chatty, even tiny amounts, and inhibitions drop away. I do not drink for religious reasons but I suggest that those of you who do should take an extended booze holiday sometime just so you can relive that heady first sip feeling as soon as you resume. I immediately switched to soft drinks, needing to keep all my wits about me.

The rest of the day was incident-free. Feeling emboldened by the relative success of the outing (nobody died), I thought about the possibility of a day-trip to Montreal, a mere 200 kilometres from here. Michael would have no more to do than the previous day: sit in the car there and back, get into his daughter's second storey apartment and stay put till it's time to go home.  No discussion about this embryonic plan with Michael.  I know too well how that works; he'd work himself up into a frenzy and disappointment would prevail.  No, I've learned my lesson. When feasible, last minute attacks are the best. So this morning, while he munched on his cereal, I quietly packed the same bag I had the day before, only this time with enough drugs for a week (you never know) and without swim suits. As his head started it's morning dip into his cereal bowl, signalling the time for a nap, I issued the orders: bathroom, shoes, cane, car. In minutes we were on the road, the hosting daughter hastily informed (she and I had sketched out tentative plans in secret the day before).

I love road trips. I have a healthy collection of music on my ipod which immediately got jacked up. Once the open highway was reached, I let her rip. Now, keep in mind I own a small, rather spineless little Hyundai Accent but I am a master of fantasy. Shades on, music blasting, countryside zipping by.The world was my oyster, as they say, whatever the heck that means.

Michael sat in dazed, slightly panicked silence.  I had anticipated he would sleep all the way but nary a nod either direction. I ignored what looked suspiciously like white knuckles gripping the door. I wasn't driving THAT fast.

Soon it was time for medication: skillful uncapping of the pill bottle while clutching the water bottle between my thighs, one hand on the steering wheel. The madness of Mick Jagger's "Midnight Rambler" pulsed through the car. Drugs successfully administered. There's probably a law against such practices; at least, there should be.

The journey was mercifully uneventful . On arrival in Montreal, there was a moment of panic as I settled him onto our daughter's bed for a snooze but I assured him he would be fine soon.  If not, there was an entire arsenal of drugs at hand if necessary.  The big guns, however, were not needed.

We arrived home eight glorious hours later. What a great weekend.  Michael collapsed in an exhausted heap back on the couch and snored through a replay of the Women's FIFA final game (Oops, I forgot to tell him he'd miss that). It might take all week for him to recover. His breathing on our return home was disturbing but I dismissed my worry. Whatever happens, it was worth it.

Nameless

"What's my name?" has become my fairly constant refrain the last couple of days.  It started two nights ago at the end of a good movie (I won't disclose the title for fear of ruining it for others) where the main character is afflicted with Alzheimer's disease and cannot even manage to figure out what to do with his fork. Though I had been enthralled by this excellent new film, Michael was distracted throughout, concentrating more on making pen squiggles on my bare legs, a favourite activity of late and not altogether unpleasant (except when the ink refuses to flow so Michael then works hard on my tender skin to get it going). At the end I dissolved into tears, the situation in the movie being all too familiar. And maybe a little bit from the pain of the pen nib.

He must have been paying some attention because when I tucked him into bed for the night he felt the need to recite the names of his children. The first two, born well before the onset of any of his Parkinson's symptoms and even longer before the arrival of any of the cognitive decline, were easy to remember, as are all his old memories.  But it took him a few seconds to recall the names of the youngest two. At least he remembered he'd had four.

Then I asked him my name. Blank. Hmmmm. He stared at the ceiling, willing my name to float back into his memory. Nothing.  I waited a minute or two then gave him a hint in the way of another question: "What's your name?"  No trouble there. Michael. And then in the next breath- ah there it is - Claire.

I wasn't terribly disturbed by this.  After all it has happened before. The difference this time was that he had been otherwise untroubled throughout the evening.  In the past when he has forgotten my name, he has been in the throes of some crisis, physical or otherwise, that messes with his grasp on reality and plunges him into delirium where all his brain circuitry gets muddled up.  This was a new development or maybe I had just never asked the question before under these circumstances. Maybe he never knows who I am.

The next morning I quizzed him again.  Another long pause before he could recall my name.  I suggested that he might want to work on that, maybe check the engraving on his wedding ring. It might be important to remember the name of the head nurse, and no, I don't want to kiss you right now.

I don't really mind, I suppose, but it does seem to be a symbol of the all-encompassing nature of this disease.  I sometimes feel as though my whole identity has been sucked into the black pit of Parkinson's, that I only exist in his mind as part of who he is and what his needs are, that whole Adam's rib thing.  I mostly have a pretty good sense of my identity and independence, such as it is, but it has occurred to me that when - if - there is a life beyond Michael and this disease, will I still be able to crawl up out of that deep, dark hole into an existence of Claire or will I have been completely subsumed by all that is Michael?