Last December I had a series of dreams involving large amounts of water and violence. The general theme of the water dreams was always that of being swept away in a storm, losing control of whatever situation I was in but always in the most literal way: a house I was in was lifted from its moorings and carried away on a deluge, or in another I was swept to safety from my flooded house on a raft or door down a street that had turned into a river, with people waiting to rescue me and my family at the end. There was another with gunfire from which I was able to hide.
Never was I alarmed by these tempests. In fact the prevailing emotion I had was of control and a sense of challenge on how to deal with the latest calamity. And never was I trying to resist the tide either; I was controlling what I could, protecting myself and my family successfully in an otherwise uncontrollable scenario.
On analyzing these vivid, unforgettable dreams I was puzzled at first, thinking they were just an indication of an emotional flood I needed to experience. Then a terrible tragedy occurred where a dear friend was killed in circumstances that mirrored the events in the trilogy of dreams, at least symbolically. At first I thought the dreams had been prophetic, preparing me somewhat for what did happen a few days later. And these dreams did comfort me, seeming to point out the inevitability of the tragedy that befell my friend. You might think I was "dreaming" about the meaning of these visions and well I might have been. I don't think it matters whether or not they were prophetic; their purpose was perhaps only to give me some comfort at a difficult time.
But lately I have been thinking about them again as we faced a literal flood of our own this weekend, indeed as many people the world over have been experiencing. We had the rainstorm of the century over a twenty-four hour period that left many houses if not completely destroyed, as in one case I heard about, then at least severely damaged. Very few people in the swath of this storm were left untouched. At the very least, most of us dealt with badly flooded basements. Many were left feeling unhinged and overwhelmed by the deluge, struggling with the physical demands of cleaning up a huge, soaking mess in the aftermath. Roads were swept away in the torrents that roared down streets and driveways, including our own, though ours mercifully remained intact. At one point I looked out and our entire acreage was nearly underwater. A lake had formed where there had been lawns, roads and ditches. My neighbour wryly noted that if she had been quick about it, she could have stuck up a "For Sale" sign, claiming waterfront property. I noted that if the rains had continued she'd have had a houseboat for sale instead.
The flood, of course, was nothing on the scale of those suffered by others this year, such as in North Dakota or along the Richelieu River in Quebec to name just a couple. But it took us all by surprise since the forecasts I heard were calling for "thunder showers" and "drizzle", not the 120-160 mm of water that fell over a couple of hours in parts of the region. More along the lines of "monsoon" I would think.
We were mercifully lightly touched compared to many, but there were some anxious moments as the water poured into my house through a basement doorway the first night, and on the second day, the power failed for two and a half hours, rendering the sump pump in our basement useless. With the water table so high, it was only a matter of minutes before the water rose up and spilled onto the basement floor. My son (who had rushed home early from work) and I made a futile attempt to bail out the sump pit, hauling buckets of water well away from the house, but the effort was like a scene from the "Sorcerer's Apprentice". The water rose up faster than we could manage. Finally I declared it was useless to continue and sent my son out to find a generator at a hardware store, thinking that, otherwise, the entire basement might fill with water before the power came back on. William drove into the city during another heavy bout of rain, tackled dreadful traffic, all the while wondering if the roads might be washed out upon his return, but he did successfully snag a generator for us. As it happened, the power came on before he returned and the sump pump resumed the heavy task of pumping out what was now a couple of inches of water covering the entire basement floor, far less than I had prepared myself for. It took us hours to push the water toward the hole, vacuum up the residue, then set about drying the floors with an assortment of old sheets, towels and blankets I had kept for just such occasions (we've had various water mishaps in the past involving broken sump pumps and a malfunctioning washing machine). In total, with the two days of flooding and subsequent clean-up, we put in over three days of hard work. But, having had a few smaller water calamities in the basement before, I had flood-proofed it as well as I could so that nothing of value lay close to the floor. Since our basement is unfinished, the clean-up was fairly quick compared to neighbours whose carpeting and belongings are still being dragged out of their homes and insurance claims are being made.
Apart from a few moments of despair, I remained calm, just as I did in my dreams about floods, not that the danger in real life came anywhere close to the frightening scenes of my subconscious. It helped that our very competent son was on hand for most of the mess and without whom I would have had a far more difficult time of it. Not the least of my worries was Michael who, in the past, has had emotional washouts over similar calamities. I needed to keep him calm and reassured that all was under control. Perhaps it is a sign of how advanced his cognitive degeneration is that he was singularly unperturbed and seemed to approach it like a young boy splashing in the water. At one point I found him outside digging trenches in the mud and I decided that since he was neither doing himself nor our situation any harm, he could carry on. At other times, he quietly sat watching television (when we had power), as always. The only alarming thing for me was hearing his falls from my position in the basement beneath him. I hadn't realized how thunderous it is when he tumbles, and each time I held my breath to hear him get up safely again.
What struck me about the entire calamity was how good I felt when the sun finally emerged and I could declare there was nothing further to be done beyond keeping the dehumidifiers going non-stop to dry things out. In the process of the clean-up, every nook and cranny of the basement was exposed and dried out, and sometimes a problem was revealed that needed fixing, such as my discovery that the dryer hose was broken. All kinds of soul-cleansing metaphors and images of bringing light to dark places sprang to mind during my rigorous clean-out. The increased isolation I felt for those few days of all-consuming work evoked thoughts of the Biblical family isolated on an Ark and the joy one must feel at the end of such an ordeal, upon hitting solid ground. It felt like we had emerged from some spiritual darkness swept away by the drying sun. If nothing else, I at least now have a cleaner basement floor and maybe even a slightly stronger spirit.
Blog Farm
Monday, June 27, 2011
Monday, June 20, 2011
These Hands
My hands have served me well and continue to do so. But they are stiff and are becoming gnarled and enlarged. I have one that holds my witch's finger, so bent at the knuckle. Arthritis, I'm told. I'll just have to live with it. The pain is manageable, just annoying. Mild medication helps if I need them to be reliable and not give out on me, not feel like shattering glass if I bump them. On an otherwise strong and healthy body, these hands, which were once my strength, are becoming my weakness.
These hands are my history.
These hands let me play as a child, turn my jump rope, dress my dolls, toss knuckle bones and jacks. They have grasped the chains of the swing that carried me high so I could leap off into the sand below, my hands cushioning the fall. They climbed trees and shinnied up a playground pole. They landed on the hard gravel from a wobbly bicycle and brushed off my torn knees. My hands knew only blissful childhood freedom.
Before computers, when all had to be written in a neat schoolgirl hand, my right middle finger developed a large calloused bump from the pressure of the pen. These hands have felt the heft of many books.
These hands have always wanted to work. They have hauled heavy loads. They have shoveled driveways and skating rinks, dug deeply into garden dirt, planted flowers, vegetables and trees; they have pulled millions of weeds, raked and mowed lawns, pruned trees. They have carried and stacked huge piles of wood for winter burning, then rubbed sore backs. They have been speckled with paint and have assembled and taken apart many things. They have knitted sweaters, socks, toys, blankets; they have sewn a multitude of small clothes. They have hauled and sorted seemingly limitless bags of used clothes for charity work.
They have held and been held. They have gripped in ecstasy.
These hands have held four babies at the breast, mourning a lost fifth. They have dressed small children, changed diapers, built tall block towers, laced skates, lifted small bodies. They have taught the three R's. They learned to do many things at once during busy years. They have cuddled and stroked while holding the story book. They have comforted one while wagging admonishment at another, and sometimes, regrettably, they have smacked a small bottom. They have cooked countless meals, washed dishes, floors and windows, and enough clothes, bedding and diapers to make a mountain. They have cut wispy hair and twisted many braids; they have bathed and towelled dry little people. They have bandaged injured elbows and knees, then wiped away tears. They have nursed through many a night of sickness. They have carried the heavy belongings of now grown children into new lives.
They have trained four cats (not well) and two dogs (more successfully). They have sunk into soft fur.
These hands have helped me glide across the river during solitary swims. They have gripped bicycle handlebars and ski poles and racquets, lifted weights, stretched in yoga and Tai Chi, thrown a crooked bowling ball, slugged a baseball bat, bounced on a trampoline with joyful children. They have laced my own skates as well as those of smaller feet.
As adult hands, they learned to drive, to shift the gears of the car and of life. They learned the new technologies, at least a little bit, allowing me to write, to listen to music in my own little space, to learn about the world and stay connected to it.
Untalented hands that recognize and appreciate talent in others, they have applauded loudly and enthusiastically.
These hands have clasped and consoled the hands of the dying.
They have loved, comforted, shaken in anger, caressed in tenderness and passion. They have held my tearful face and that of my husband; they have pounded the floor; they have railed at God; they have been pressed together in prayer, gratitude and submission. They have held my stricken husband and calmed his terror. They have steadied his lurching Parkinson's body, lifted him from the floor when he falls, propelled him in a wheelchair when he finally submits. They have cleaned him in ways I thought I'd only have to do for my children. They have bathed him, dressed him and tied his shoes and skates. They now attend to his every need.
These hands are tired, in need of rest. But I fear the cessation of busyness. I fear they will seize up completely when no longer needed.
I would rather endure the pain.
These hands are my history.
These hands let me play as a child, turn my jump rope, dress my dolls, toss knuckle bones and jacks. They have grasped the chains of the swing that carried me high so I could leap off into the sand below, my hands cushioning the fall. They climbed trees and shinnied up a playground pole. They landed on the hard gravel from a wobbly bicycle and brushed off my torn knees. My hands knew only blissful childhood freedom.
Before computers, when all had to be written in a neat schoolgirl hand, my right middle finger developed a large calloused bump from the pressure of the pen. These hands have felt the heft of many books.
These hands have always wanted to work. They have hauled heavy loads. They have shoveled driveways and skating rinks, dug deeply into garden dirt, planted flowers, vegetables and trees; they have pulled millions of weeds, raked and mowed lawns, pruned trees. They have carried and stacked huge piles of wood for winter burning, then rubbed sore backs. They have been speckled with paint and have assembled and taken apart many things. They have knitted sweaters, socks, toys, blankets; they have sewn a multitude of small clothes. They have hauled and sorted seemingly limitless bags of used clothes for charity work.
They have held and been held. They have gripped in ecstasy.
These hands have held four babies at the breast, mourning a lost fifth. They have dressed small children, changed diapers, built tall block towers, laced skates, lifted small bodies. They have taught the three R's. They learned to do many things at once during busy years. They have cuddled and stroked while holding the story book. They have comforted one while wagging admonishment at another, and sometimes, regrettably, they have smacked a small bottom. They have cooked countless meals, washed dishes, floors and windows, and enough clothes, bedding and diapers to make a mountain. They have cut wispy hair and twisted many braids; they have bathed and towelled dry little people. They have bandaged injured elbows and knees, then wiped away tears. They have nursed through many a night of sickness. They have carried the heavy belongings of now grown children into new lives.
They have trained four cats (not well) and two dogs (more successfully). They have sunk into soft fur.
These hands have helped me glide across the river during solitary swims. They have gripped bicycle handlebars and ski poles and racquets, lifted weights, stretched in yoga and Tai Chi, thrown a crooked bowling ball, slugged a baseball bat, bounced on a trampoline with joyful children. They have laced my own skates as well as those of smaller feet.
As adult hands, they learned to drive, to shift the gears of the car and of life. They learned the new technologies, at least a little bit, allowing me to write, to listen to music in my own little space, to learn about the world and stay connected to it.
Untalented hands that recognize and appreciate talent in others, they have applauded loudly and enthusiastically.
These hands have clasped and consoled the hands of the dying.
They have loved, comforted, shaken in anger, caressed in tenderness and passion. They have held my tearful face and that of my husband; they have pounded the floor; they have railed at God; they have been pressed together in prayer, gratitude and submission. They have held my stricken husband and calmed his terror. They have steadied his lurching Parkinson's body, lifted him from the floor when he falls, propelled him in a wheelchair when he finally submits. They have cleaned him in ways I thought I'd only have to do for my children. They have bathed him, dressed him and tied his shoes and skates. They now attend to his every need.
These hands are tired, in need of rest. But I fear the cessation of busyness. I fear they will seize up completely when no longer needed.
I would rather endure the pain.
Tuesday, June 14, 2011
Stone walls and iron bars
Stone walls do not a prison make,
Nor iron bars a cage;
Minds innocent and quiet take
That for an hermitage;
If I have freedom in my love
And in my soul am free,
Angels alone, that soar above,
Enjoy such liberty.
Moving day. Daughter number three, who has been living away for a few years, has moved into a new apartment in Montreal and has taken the rest of her possessions from home with her. A great big van was booked for the occasion. We packed up in the morning, leaving Michael behind for the day with his caregiver, then drove off to Montreal.
We have done this before, she and I, to and from university. In fact I've repeated this job several times with all but the youngest so far. It is an expedition I rather enjoy, a special bonding time with the child who is leaving. When the move is complete and good-byes are being said, there are usually more than a few tears as yet another one flies away to independence. With this daughter already well launched into her life in Montreal - three years of university and now a full-time job - there was only happiness this time for this independent young woman. I have shed my tears for her already as I have for her sisters.
At the end of the month comes the last move. Alas, I cannot assist much with this one because our son is moving to Toronto for a job promotion, and where a move to Montreal is an easy day-trip from here, not so a trip to Toronto. I've done it twice before for the others and it requires at least an overnight commitment, something I can no longer do. I will have to content myself with assisting all I can from this end to make his departure as smooth as possible.
This is my baby who is leaving. Though we rarely see him with his busy life, it is the idea of his never being here that I struggle with. And the knowledge that this is the last. The nest will be well and truly empty.
I'm imagining all the vacant rooms we will have, two of them already only filled on holiday visits. I am trying to envision other uses for them, but it is a relatively large house and Michael and I need only a few rooms. Michael's life is confined to the main floor which has been fully adapted to his needs. I occupy my sanctuary on the second floor but only really use three rooms: bedroom, bathroom, office. That leaves three others, large gaping holes.
Will we stay here? Is it worth keeping a large house for the rare occasions that all the kids are home together? These are questions I do not need to answer yet. A move for Michael now would be catastrophic. Even slight change can be life-altering for him, so it is impossible to consider such a thing, unless, of course, something happens to me and I can no longer manage the work.
He loves our home, as do I. We have lived here twenty-two years and have truly made it our own. Besides, it is now so well adapted to his needs, it would be difficult to find anything comparable. It is our own small paradise, nestled in a little village between the Gatineau hills and the river. Over the past year, with little else to do, I have been able to cast my gaze farther than my indoor domestic duties, which were always my chief concern, still are. I have been able to focus on the outside, restoring it to the sanctuary it was before the years of adapting to the harsh new reality of Michael's illness left it sadly neglected.
Financial constraints might be a deciding factor for a move but for now we are secure. Michael collects a decent pension from a full career with the federal government, and, though it isn't a princely sum, we have always lived frugally and continue to do so. I am grateful I do not have to concern myself too seriously with money matters, one less thing to worry about. I manage all our finances, of course, and I am confident and secure that I can take care of my husband in the comfort we now enjoy for the foreseeable future.
With the long-term financial concerns under control, what worries me more are the short-term issues. With a long summer ahead and both of the youngest truly gone, I am thinking of the increasing isolation and quiet. Laura has always been home for summer jobs, William has always just been here. The walls are starting to feel closer already, highlighting the prison sentence this disease has imposed on us both. At least it is summer and the large yard allows us to expand our living space. So, though we are confined to our property most days, it is a prison-paradise for Michael to wander through and enjoy when his medications allow. I believe it gives him a sense of peace and stability that I too enjoy.
Saturday, June 4, 2011
The Long Dead End Road to Surgery
Deep Brain Stimulation (DBS) has been fairly successful, not in curing the disease, but by increasing mobility and allowing the patient to function on fewer Parkinson's medications. It is not a static procedure; it allows long-term post-surgical adjustments to be made as the patient continues to degenerate, in theory allowing an expectation of stasis of symptoms at least.
It has been used to treat PD for well over ten years and was discovered almost by accident during a procedure called pallidotomy that has now fallen into disfavour because of its short-term efficacy. Very simply, during a pallidotomy, a small lesion was created in the brain, killing a tiny amount of brain tissue. This destruction of tissue helped to minimize the debilitating dyskinesia caused by the Levadopa drug therapy. While performing this surgery, it was discovered that the electrodes or probes being used to locate the optimum location in the brain for "frying" were actually causing an immediate improvement in the patient. (The surgery must be performed with the patient sedated but awake so he can give feedback to the surgeons). The pallidotomy, which permanently destroys brain matter, was replaced by DBS, which does not.
The description of DBS, as it was given to us, reads like something from the script of a Frankenstein movie or the Bionic Man. The surgery at the Montreal Neurological Centre lasts many days and the patient is also mildly sedated but awake for most of the operation. The first thing that must be accomplished (apart from the months of preparatory assessment - more about that later) is the fitting and construction of a metal frame in which to secure the head, rendering the patient's skull completely immobile and allowing the surgeon to map the patient's skull and brain. The next step is to bore holes on either side of the skull with something that eerily resembles a Black and Decker drill, then carefully implant electrodes into the brain. That takes two days of three to six hour procedures on each side of the brain and the patient must be unmedicated the entire time. The third day of surgery, the only day under general anesthetic, is to implant the battery pack underneath the collar bone and attach the electrode wires that run subcutaneously from the electrodes, through the neck and down to the battery box. The patient is then monitored for several days to make sure he is stable, but the power is not turned on for some time until he has recovered from the surgeries. Then the power is gradually ramped up over a period of several months until the optimum level of juice is achieved. Thereafter a patient must visit the clinic repeatedly for the rest of his life to check for tolerance and to adjust the power level accordingly. Drug therapy must be adjusted too as the patient responds to the treatment.
There are great risks with this surgery, infection being very common and stroke a little less so. There are also, of course, all the risks associated with any brain surgery. The patient is assessed thoroughly for months beforehand to determine suitability. The factors that make a Parkinson's patient a good candidate for this surgery are many: good response to conventional Parkinson's medications, specifically Levodopa, the synthetic dopamine drug that has revolutionized Parkinson's treatments in the past half century; good overall health; good mental health; no deterioration in cognition; a good home support system.
In Michael's case his neurologist had to recommend him for this surgery attesting to his suitability in all the above factors. Once that letter was sent we were to await a summons from the Montreal Neurological Institute, one of the few centres in Canada that offers the procedure. That summons came many months later and the ball was rolling.
The doctor recommended Michael in the early months of 2007, not long after a mild heart attack, suffered in February of that year. The heart attack had followed a minor stroke or TIA in the fall of 2006. These two episodes did not seem to be an impediment to the surgery, at least not in the eyes of the neurologist. At the time of the heart attack, we were gradually weaning Michael off the new drug Azilect (Rasagiline) which had seemed so effective in the first few weeks but then very suddenly, for unknown reasons, Michael was back to his previous levels of low mobility and lethargy, if not even more so. Given the toxicity of this drug, I was reluctant to keep him on it if it was no longer effective. The doctor agreed and we started the long process of weaning. Michael had been completely off the drug for just a few days when the heart attack hit, but the literature warned against any surgery until the body had been free of the drug for a full two weeks. The neurologist, when questioned, denied that there could be any connection between the introduction, and subsequent withdrawal, of this new drug and the heart attack, even though some literature did make a loose one.
You can imagine, then, my terror that bypass surgery would be necessary for Michael. The medical staff was pressuring me to sign permission papers and waivers for such surgery if necessary. I had no choice if he were to go forward with any corrective procedures for his heart. Michael underwent an angiogram, angioplasty and the placement of two stents to open up a nearly completely blocked artery. In the end there was no need for him to go under the knife, but for the entire four days he spent in hospital awaiting those procedures, I repeated my concerns to every single hospital staff member I could lay my hands on to warn them of the problems with this new drug, afraid someone might not read his chart where a warning was written. At one point I think I may have accosted a rather confused janitor who happened to be dressed in scrubs, virtually indistinguishable from the medical staff. All this while Michael was in the throes of an extreme attack of psychosis, the most frightening one he had experienced up to that point. He has since had many equally serious attacks to which we are now all quite accustomed but that first one was most alarming. Fortunately, he has no recollection of the event but for the rest of us, it is seared into our brains.
By late summer of 2007 we were on our way to Montreal for the first of many consultations. We met with a PD neurologist and the surgeon who specialized in this surgery. I had done my homework and was convinced that the cognitive impairment I had seen developing slowly over the years might disqualify Michael. I tried to discuss this with the doctors as well as the deep concern I had over his occasional displays of severe psychosis especially in a hospital setting. My concerns were dismissed. Of course the only word they were willing to consider was that of the referring doctor who had never witnessed these episodes and seemed to have ignored my reports. These two doctors confidently assured Michael he was on his way to a new life and sent us on our way with the promise of immediate follow-up for pre-admission tests. Michael left that appointment buoyed with hope. I left in a rage so overwhelming that I speedily and nearly violently pushed Michael in his flimsy portable wheelchair over four kilometres, all the way back to the train station to make the two hour trip home. I knew in my heart this was a mistake.
Over the weeks of waiting for the next stage, I reminded myself that I am not a doctor and surely these men know better than I. Why would they offer false hope? I calmed down.
The next stage was pre-op preparation: visits with an internal specialist, a physiotherapist, an occupational therapist, a psychologist, then an MRI and blood tests. Things were moving ahead quickly and we made many difficult trips to Montreal, some day trips, some overnight. I planned for the ten day stay I would have to arrange in Montreal so I could be nearby for his entire hospital visit, all the while trying to keep at bay the wolves of serious doubt.
The visit to the internal specialist sounded an alarm bell. Michael's heart condition needed to be reassessed. I was able, by some miracle, to make a telephone connection straight through to Michael's heart surgeon a day or two later. Michael was in for reassessment soon after, another angiogram scheduled immediately. A clean bill of cardiac health was issued. It seemed that the path was being magically cleared for the DBS surgery.
Then everything seemed to come to a grinding halt. Any contact I tried to make with the surgeon in Montreal met a dead end. His sweet, but slightly batty sounding receptionist kept giving me vague but cheerful responses. She couldn't give me any idea how long things might be, yet on other occasions she gave great hope that surgery could be imminent, all the while obviously shielding the great man from my pestering calls. All this took well over a year and a huge toll on Michael's mental health. We put everything on hold, making his surgery the priority, not wanting to miss the call giving us a definitive date, the call that never came. No reasons were ever given for the delay besides vague murmurings about a new fiscal year and budgets.
Finally, in frustration, I tracked down the surgeon on the internet and actually found an email address. I expressed my concern about the debilitating effect the wait was having on Michael and how his dementia was now escalating. But none of this was new, just more extreme than it had been that first visit in 2007.
This was spring of 2009, more than two years after that reference letter was written by Michael's attending neurologist. My email must have penetrated because some time after it was written, I received a phonecall from the surgeon himself asking me to clarify my concerns. I had to stifle a sarcastic laugh. Wasn't that what I had been trying desperately to do for the past two years? Why was he suddenly listening now?
An appointment was made; we were to be in Montreal a week later. Michael was filled with hope. I was not but I kept that to myself. Once again we met with both doctors and yet another cognitive test was issued. The doctors made another grand pronouncement that all my husband needed was the reduction, if not removal, of certain Parkinson's drugs, what they deemed to be responsible for these problems. "You will get your husband back," they asserted. My doubting heart fluttered hopefully for a moment and I set to work administering the new drug regimen.
An appointment was made; we were to be in Montreal a week later. Michael was filled with hope. I was not but I kept that to myself. Once again we met with both doctors and yet another cognitive test was issued. The doctors made another grand pronouncement that all my husband needed was the reduction, if not removal, of certain Parkinson's drugs, what they deemed to be responsible for these problems. "You will get your husband back," they asserted. My doubting heart fluttered hopefully for a moment and I set to work administering the new drug regimen.
Several weeks later, time for the new drug reductions to have worked the promised miracles, we were summoned again. The appointment was for April 30. Be there. I remember the date clearly because I had booked an appointment for myself on that day, an appointment for which I had had to wait months. When I raised this issue with the person issuing the summons, she told me I'd have to reschedule my own appointment. Okay. Done. I wasn't looking forward to that first mammogram anyway.
Both doctors were present again. Another cognitive test was administered but Michael failed it miserably. This time the news was bad: Absolutely no surgery, dementia far too advanced, the risks too great. Surprise, surprise. Michael was devastated. I was struggling simultaneously with enormous relief and another attack of extreme anger. I wanted to rip these men apart. My poor husband sat slumped in his wheelchair and announced he didn't think he could go on.
It took me a long time to come to terms with the callous treatment my husband suffered. I know these doctors are compassionate people and are working within a complicated, underfunded and imperfect system, but I wonder if they are aware of the impact these long uncertain waits have on their patients, indeed on their families. I wonder, too, if the wait exacerbated my husband's condition and, if things could have progressed as quickly as was first promised, whether the outcome might have been happier. Or maybe my instincts were right all along and I might have lost my dear man under the knife (drill?) much sooner, or worse, have him return home in a vegetative state, a fate that has befallen some who have undergone this surgery. I have come to realize that such retrospective second-guessing is futile. We have put it behind us now, the writing of this the last nail in that coffin.
*Reference: Blair Ford, M.D., Deep Brain Stimulation for Parkinson's Disease, Parkinson's Disease Foundation, New York, 2005
It took me a long time to come to terms with the callous treatment my husband suffered. I know these doctors are compassionate people and are working within a complicated, underfunded and imperfect system, but I wonder if they are aware of the impact these long uncertain waits have on their patients, indeed on their families. I wonder, too, if the wait exacerbated my husband's condition and, if things could have progressed as quickly as was first promised, whether the outcome might have been happier. Or maybe my instincts were right all along and I might have lost my dear man under the knife (drill?) much sooner, or worse, have him return home in a vegetative state, a fate that has befallen some who have undergone this surgery. I have come to realize that such retrospective second-guessing is futile. We have put it behind us now, the writing of this the last nail in that coffin.
*Reference: Blair Ford, M.D., Deep Brain Stimulation for Parkinson's Disease, Parkinson's Disease Foundation, New York, 2005
Wednesday, June 1, 2011
Diversions
Hot. Humid. Hazy. A true summer's day. Thank goodness for the heat pump I had installed six years ago that has reduced our energy costs hugely and provided us with air conditioning on those days when it's just too hot to function. Yesterday was one of those days but, as it was the first such day of the year, our log house didn't have time to heat up and stayed cool all by itself, making it a haven from the furnace outside.
Michael is terribly heat-sensitive now, though he still seeks the sun. I have to be very watchful that he doesn't over-exert himself. That's difficult. With advanced Parkinson's disease, every single move he makes requires a Herculean effort, especially if his medications have run out. Every movement now can leave him sweating and raggedly labouring for air even without the added heat.
I managed to keep him in the cool most of the day yesterday, but as late afternoon approached, his most active time of the day, I did urge him to accompany me outside for a quiet stroll around the yard in the shade. I was busy inspecting a small grove of trees I've been thinning when I realized he'd disappeared. Good grief, he can still be so quick and quiet at times.
Inside I found him in the cool basement hunched over an ancient bicycle, bike helmet perched on his head. This poor old bike is past its glory days but it is still the one Michael gravitates to despite a fancy new thing purchased about eight years ago. Michael bought this old girl back in the 70's and has ridden, I would guess, thousands and thousands of kilometres on her. Old and faithful, this was the bike that transported Michael to and from work for years. He spent hours servicing and repairing this old ten speed, lovingly cleaning and touching her up over the years.
But Old Faithful has suffered at his hands too. With creeping dementia, his focus has continued to dog this poor bike and has seen her painted haphazardly, stripped down and put back together in a fashion that will never see her on the roads again. The seat has been removed, not a difficult thing to fix, unless you are Michael and have bent and distorted the appropriate hardware. All in all, she's only fit for tinkering now I'm sad to report.
So when I saw Michael with his helmet on and tire pump out to pump up the tires on this sad relic, I quietly announced supper was nearly ready, attempting to divert his fixed attention from what I guessed was an intention to hit the roads. The diversion lasted only throughout the meal, then back down into the basement he disappeared. I followed him and babbled on about the danger of a bike ride right now, just as his meds were about to fail him, not that I have any intention of EVER allowing him out on his own again for a bike ride. No response from Michael, just dogged concentration. I retreated upstairs to await the inevitable failure of the medication.
Minutes later, Michael is upstairs with helmet still on, now buckled under his chin. He rummages around in his room and emerges with a few pairs of soccer socks and his soccer cleats. Okay, it seems like we've shifted gears or now his intentions are becoming clearer. As he is lacing up his shoes I enquire about his plans. Apparently he's going up to the soccer field on his bike to meet his friends to play soccer. I remind him it's Tuesday, not Friday, the usual night for Old-Fart's soccer. Oh. Now what?
"Let's drive up to the soccer field just to have a look," I suggest, "and leave the bikes behind. It's too hot to cycle."
Okay. The soccer field is just a stone's throw away, a mere ten minute walk from our house, a shorter car or bike ride. On arrival he sees none of his cronies on the fields, just scads of children and their parents. I wonder if he feels any nostalgia for the years of kids' soccer coaching he did with such dedication. My guess is that over those many years of gentle coaching, he probably met most of the community's children now between the ages of 20 and 28.
Soccer was a passion for Michael. He came to it late in life, like most older Canadian-born adults in this country. The first year there was a men's team here in our small town, back in 1994, he was out there willing to learn.
Michael was, still is, a natural athlete and could play almost any team sport. Though he loved his cycling and cross-country skiing, it was team sports that really fired him up. He was a very skilled hockey goalie for decades, coming back to the sport in Canada as an older teenager after three years away in the American south where hockey didn't exist at the time. There instead he tried out for American football despite his tiny frame and short stature until he hit puberty at age sixteen and shot up into a tall but very skinny boy. Needless to say, he didn't make the cut, but his physical limitations didn't prevent him from trying out. He has played basketball and baseball too, the latter with an adult men's team that spent as much time partying as they did playing.
Michael used to throw himself into any sport he played, a kind of take-no-prisoners approach. How he escaped serious injury all those years is a wonder. As a hockey goalie, you'd see him diving and falling for speeding pucks with an agility, even later in life, that bespoke skill and passion. I've often thought that he has been protected from serious injury in this latest athletic endeavour called Parkinson's disease by that former ease and skill that he displayed while flopping all over the ice through many decades of hockey. Michael has literally fallen thousands of times throughout this disease and has never had a serious injury beyond a slightly scraped knee or elbow. I believe that hockey, sports in general, was his best training for this disease.
But there might be a flip-side to the sports too. Recently there has been a frenzy of media attention on the dangers of repeated concussions, especially in sports like hockey and football. In those early days of hockey, Michael's protective headgear was nearly non-existent, and, though he has no memory of any serious dings to the head all those years, perhaps there were a few at least. Having no memory of them could be symptomatic of repeated concussions that would never have been recognized or treated as such. Then there were a few whacks to the head during pick-up football games back in his youth, one sending him to the hospital with a nasty cut to the eye where his eyeglasses had shattered to bits. He was lucky not to lose the eye but there could also have been silent injury to the brain. But most dramatically was a blow to the head during his very first competitive game of soccer where he took an elbow to the skull and dropped like a sack of potatoes, unconscious. There were many more minor bangs to his head as he furiously but inexpertly headed the soccer ball. Knowing what I now know about repeated concussions, it is possible that these many blows to the head caused the neurological damage that led to Parkinson's disease, especially when I think that his disease manifested itself most aggressively right after that knockout blow to the head on the soccer field. As was the case in sports until recently, he got back on his feet and carried right on playing, soldiering on. Experts now tell us that is the worst thing to do after a concussion. Obviously, Parkinson's disease does not develop that quickly - he was already showing early signs of the disease - but I do think it was the proverbial icing on the cake.
In the end last night, there was no cycling, no soccer. Diversionary tactics worked again. But once we were out in the car, I suggested a drive in our beloved Gatineau Park where we used to ski, swim, cycle, hike and picnic so much with the kids. There were dozens of cyclists out on the steep roads, some labouring heavily up the hills. We drove slowly, carefully and wistfully past them all.
Michael is terribly heat-sensitive now, though he still seeks the sun. I have to be very watchful that he doesn't over-exert himself. That's difficult. With advanced Parkinson's disease, every single move he makes requires a Herculean effort, especially if his medications have run out. Every movement now can leave him sweating and raggedly labouring for air even without the added heat.
I managed to keep him in the cool most of the day yesterday, but as late afternoon approached, his most active time of the day, I did urge him to accompany me outside for a quiet stroll around the yard in the shade. I was busy inspecting a small grove of trees I've been thinning when I realized he'd disappeared. Good grief, he can still be so quick and quiet at times.
Inside I found him in the cool basement hunched over an ancient bicycle, bike helmet perched on his head. This poor old bike is past its glory days but it is still the one Michael gravitates to despite a fancy new thing purchased about eight years ago. Michael bought this old girl back in the 70's and has ridden, I would guess, thousands and thousands of kilometres on her. Old and faithful, this was the bike that transported Michael to and from work for years. He spent hours servicing and repairing this old ten speed, lovingly cleaning and touching her up over the years.
But Old Faithful has suffered at his hands too. With creeping dementia, his focus has continued to dog this poor bike and has seen her painted haphazardly, stripped down and put back together in a fashion that will never see her on the roads again. The seat has been removed, not a difficult thing to fix, unless you are Michael and have bent and distorted the appropriate hardware. All in all, she's only fit for tinkering now I'm sad to report.
So when I saw Michael with his helmet on and tire pump out to pump up the tires on this sad relic, I quietly announced supper was nearly ready, attempting to divert his fixed attention from what I guessed was an intention to hit the roads. The diversion lasted only throughout the meal, then back down into the basement he disappeared. I followed him and babbled on about the danger of a bike ride right now, just as his meds were about to fail him, not that I have any intention of EVER allowing him out on his own again for a bike ride. No response from Michael, just dogged concentration. I retreated upstairs to await the inevitable failure of the medication.
Minutes later, Michael is upstairs with helmet still on, now buckled under his chin. He rummages around in his room and emerges with a few pairs of soccer socks and his soccer cleats. Okay, it seems like we've shifted gears or now his intentions are becoming clearer. As he is lacing up his shoes I enquire about his plans. Apparently he's going up to the soccer field on his bike to meet his friends to play soccer. I remind him it's Tuesday, not Friday, the usual night for Old-Fart's soccer. Oh. Now what?
"Let's drive up to the soccer field just to have a look," I suggest, "and leave the bikes behind. It's too hot to cycle."
Okay. The soccer field is just a stone's throw away, a mere ten minute walk from our house, a shorter car or bike ride. On arrival he sees none of his cronies on the fields, just scads of children and their parents. I wonder if he feels any nostalgia for the years of kids' soccer coaching he did with such dedication. My guess is that over those many years of gentle coaching, he probably met most of the community's children now between the ages of 20 and 28.
Soccer was a passion for Michael. He came to it late in life, like most older Canadian-born adults in this country. The first year there was a men's team here in our small town, back in 1994, he was out there willing to learn.
Michael was, still is, a natural athlete and could play almost any team sport. Though he loved his cycling and cross-country skiing, it was team sports that really fired him up. He was a very skilled hockey goalie for decades, coming back to the sport in Canada as an older teenager after three years away in the American south where hockey didn't exist at the time. There instead he tried out for American football despite his tiny frame and short stature until he hit puberty at age sixteen and shot up into a tall but very skinny boy. Needless to say, he didn't make the cut, but his physical limitations didn't prevent him from trying out. He has played basketball and baseball too, the latter with an adult men's team that spent as much time partying as they did playing.
Michael used to throw himself into any sport he played, a kind of take-no-prisoners approach. How he escaped serious injury all those years is a wonder. As a hockey goalie, you'd see him diving and falling for speeding pucks with an agility, even later in life, that bespoke skill and passion. I've often thought that he has been protected from serious injury in this latest athletic endeavour called Parkinson's disease by that former ease and skill that he displayed while flopping all over the ice through many decades of hockey. Michael has literally fallen thousands of times throughout this disease and has never had a serious injury beyond a slightly scraped knee or elbow. I believe that hockey, sports in general, was his best training for this disease.
But there might be a flip-side to the sports too. Recently there has been a frenzy of media attention on the dangers of repeated concussions, especially in sports like hockey and football. In those early days of hockey, Michael's protective headgear was nearly non-existent, and, though he has no memory of any serious dings to the head all those years, perhaps there were a few at least. Having no memory of them could be symptomatic of repeated concussions that would never have been recognized or treated as such. Then there were a few whacks to the head during pick-up football games back in his youth, one sending him to the hospital with a nasty cut to the eye where his eyeglasses had shattered to bits. He was lucky not to lose the eye but there could also have been silent injury to the brain. But most dramatically was a blow to the head during his very first competitive game of soccer where he took an elbow to the skull and dropped like a sack of potatoes, unconscious. There were many more minor bangs to his head as he furiously but inexpertly headed the soccer ball. Knowing what I now know about repeated concussions, it is possible that these many blows to the head caused the neurological damage that led to Parkinson's disease, especially when I think that his disease manifested itself most aggressively right after that knockout blow to the head on the soccer field. As was the case in sports until recently, he got back on his feet and carried right on playing, soldiering on. Experts now tell us that is the worst thing to do after a concussion. Obviously, Parkinson's disease does not develop that quickly - he was already showing early signs of the disease - but I do think it was the proverbial icing on the cake.
In the end last night, there was no cycling, no soccer. Diversionary tactics worked again. But once we were out in the car, I suggested a drive in our beloved Gatineau Park where we used to ski, swim, cycle, hike and picnic so much with the kids. There were dozens of cyclists out on the steep roads, some labouring heavily up the hills. We drove slowly, carefully and wistfully past them all.
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