Happiness is a Bicycle

Spring is here and with it comes the usual restlessness that afflicts us all. Michael is no exception. Though his times of wellness are no more frequent right now, when he does feel well his thoughts run to his usual springtime activities of former times.

Michael was an avid cyclist right up until a few years ago. A confirmed though quiet environmentalist, he always used public transit to travel to work and in the warmer months, out came his bicycle. The three homes we've lived in together have all been chosen for their proximity to public transit routes and place of work. Even in our small town on the outskirts of Ottawa there is a single bus that winds its way into town twice in the morning and back again twice in the evening, and throughout the winter months my husband would be on it. But during the warm weather he took great joy in the 20 km round trip into the city, climbing the killer "Mile Hill" at the end of each day. On weekends he'd set off to climb the arduous hills of the Gatineau Park. I rarely joined him, having a strong aversion to the over-exertion required to climb those hills, but in our child-free days we used to take long trips together, relishing the freedom. He could always leave me in his dust but would chivalrously hold back on my account.

One of the strange aspects of this disease is the unevenness of the symptoms and some pretty interesting paradoxes. Michael can go from complete mobility one moment to complete disability the next as his drugs wear off. But what is so strange is his ability to run even when he cannot walk and, more curiously, ride a bicycle, an activity that requires great balance and strength, when he would otherwise have to crawl.

Recently research has come out of Holland on this subject, investigating how and why Parkinson's patients can successfully go for a bike ride when they cannot walk; my husband is apparently not an anomaly. Dr Snijders and Dr Bloem of the Donders Institute for Brain, Cognition, and Behavior (Radboud University Nijmegen Medical Center, Nijmegen, the Netherlands) have made no conclusive statements on why this is. They have theories but nothing proven as yet. It has long been observed that many PD patients can often do complex movements, like dancing or running, for a short while, freezing immediately after. There is a well known case of a group of PD patients running out of a burning building only to freeze in place as soon as they got outside (Gina Kolata, New York Times). This phenomenon is called a kinesia paradox and it never lasts long. It could be explained by the possibility that these actions use a different, unaffected part of the brain or that visual or emotional cues are offered (like the feet on pedals of a bicycle or the strong survival instinct in the case of the fire escapers), but no one knows for sure.

I stumbled upon reports of this research almost a year and a half ago but it has only been published recently in the April 1 issue of The New England Journal of Medicine and thereby hitting the media, prompting all family members and friends who read about it to call. When I first heard about it back in early 2009 and knew that Michael fit into this category of PD patients displaying this strange phenomenon, I urged him to hop on his stationary bicycle and get moving. Not only would it be good for his atrophying muscles but also for his cardiac system which has taken a beating the past few years. Though he made occasional valiant efforts it just wasn't fun so he rarely did it and I got tired of being a nag all the time. So the stationary bike sat unused most of the past two winters.

But last summer we made a big effort to get out on our bicycles as much as possible, enjoying many trips on the region's vast system of bicycle trails and avoiding the main roads as much as possible because even though he could still leave me in his dust while pedaling steadily, as soon as he stopped, he would fall off risking life and limb at every stop sign. As the accompanying cyclist it took all my nerve to embark on these trips. Planning was essential to success; I always had to keep in mind his drug cycle, and choosing a safe route was critical. I always cycle a safe distance behind him in case there are any calamities and I can be his eyes and warn him of upcoming problems. He tends to cycle like a child, with joyful abandon and often oblivious of others on the trail.

When Michael's condition worsened so severely back in the fall I never imagined we would cycle together again. He has spent the entire winter mostly couch-bound, unable to move most days. His limbs are visibly thinner from atrophied muscles. He made occasional weak efforts to climb upon his stationary bicycle but exertion was too much and he'd give up after a couple of minutes, labouring for air.

So imagine my concern and surprise when, one day last week while talking on the phone, I see Michael walk by dressed in his cycling garb, announcing he was going for a ride. I say nothing at first, thinking I'll wait this out and see how far in the readying process he gets. As I predicted, getting out his bike, finding his shoes, helmet, wallet and other perceived necessary paraphernalia took ages and ate up all his available strength and mobility. Nearly a half hour later, he slumped on the couch, exhausted from the preparations. I had to sit down with him and express my concern over his plan to go out by himself. I had already been making plans in my head to try some very controlled cycling trips with him on easy, quiet trails but going out by himself is simply out of the question. Despite his collapse, he bristled at my prohibition. The problem with dementia is an inability to properly assess one's capability to do anything and I find it is an ongoing problem, with me usually having to step in and be heavy-handed.

But I came up with what I thought was a brilliant plan. Lately I have been plagued with caregiving issues (I usually don't have anyone most days) so until I am confident enough to take him out on the populated trails, I suggested that he accompany me on my daily dog walks which otherwise I have to forgo when there is no caregiver. He can ride his bike while I walk on the safe, quiet path I usually take.

That is what we did yesterday. It was such a joy to watch him whiz back and forth on his bike, clearly enjoying every moment. He fell off a couple of times but nothing serious, sustaining no injuries. The dogs enjoyed the confusion of him careening up and down the road, covering probably triple the distance I walked so everyone came home happy.

I was feeling pretty pleased with the day, thinking that at least I can now get out for some exercise while we get through the latest caregiving mess. But everything has a cost it seems. He was feeling so confident and happy and liberated by the biking experience that it seemed to give him a sense of independence. My day ended with him grabbing the car keys to go for a spin. More angry negotiations, more attempts to explain why he cannot do that. But he doesn't understand. He only thinks I am trying to thwart his independence. But at least he had those moments of joy and freedom on his bike. It has made me resolve to get him out every day either cycling together somewhere safe or at least with me to walk the dogs. And I'll hide the car keys.

Resurrection

While the Christian world celebrated the Resurrection of Christ this Easter weekend, our family was enjoying a renewal of our own.

During the past several weeks I have seen an enormous improvement in Michael's condition, something I never thought we'd see again. He is sleeping better most nights which is perhaps why he enjoys more mental acuity during the day and seems to have longer periods of physical fluidity. It could be the result of a recent adjustment in his medication or that he is simply getting better after the horrific few weeks of an extreme Parkinson's crisis during the late fall and winter. But Thursday, the day before the weekend, he seemed to slip once more into the usual torpor, unable to move or even stay awake most of the day. I wasn't sorry because I could buzz around vacuuming and cleaning the house before family arrived for the weekend, confident that even the noisy vacuum cleaner would not disturb him, though, as the day wore on, I anxiously checked him more frequently to be sure he was still breathing.

The first offspring arrived Thursday evening, two more by noon on Friday. That day he perked up a bit but still succumbed to several naps throughout the day. On Saturday the weather was spectacularly warm and we planned to have a houseful of friends and family for a buffet supper, thirteen of us, in fact, and three dogs. I was certain the day would exhaust him. We lead a very quiet life with the only child still living at home rarely around, so we notice an enormous increase in the noise and energy levels with each additional child. It's amazing how loud adult children can be when they get together but I love the positive, happy energy in the normally quiet household.

As the day wore on and I was immersed in cooking and preparing for the crowd, I noticed something remarkable. My husband never flagged all day. He was out there playing with the kids in the back yard, running around and hurling the football like the pro he always was. Given the extra drain on his energy, I was careful to stay on top of the five doses of medication he needs to get through the day, a total of 23+ pills, but I found at each dose time he was still full of energy and fully mobile, not normally the case. I was sure the evening crowd would do him in - it has in the past - but, no, he was calm, engaged, aware and talkative. When everyone had left by 9:30 pm he slumped and had to go to bed immediately.

I felt sure the next day would see him exhausted and drained after a full day of activity but he was just as energetic. In fact, during a brief Skype conversation with a relative in Britain, his old wry self-deprecating humour surfaced as he joked about tinkering with the tractor (a serious bone of contention between us) and knowing how to mask his blunders from everyone's sight. A rare glimpse into the old Michael.

Easter Monday, with the last child returning to university, he was still busy. By then, though, there were no kids to throw a football or kick a soccer ball so he focused his attention back on the tractor and other large machinery we have, bringing back my anxiety over his restlessness and how to channel it safely away from dangerous machines that he can no longer operate but thinks he can. By Monday evening it had escalated to a kind of mania where I was seriously planning to sell off everything in the house that could harm him. But that would be an impossible task and without merit because on a bad day even things like the electrical outlets are a danger for him (I found him kneeling before one just last week ready to insert needle-nose pliers "to fix" something). There were angry words between us when I felt I had to intervene and few words exchanged the rest of the day as we both were on slow simmer.

I had resolved to take steps on Tuesday to rid the household of as many dangerous things as I could if this new energy and wellness were the new reality. But, for better or for worse, he slumped back into lethargy and immobility. I welcomed it on one level but was saddened by it too. He had truly enjoyed a kind of resurrection last weekend and for all the problems that posed for me, it was wonderful to see. It is also humbling to know that my company alone lacks the stimulation he seems to need. He enjoys, more than anything, the fun and camaraderie of a good game of something, anything, with like-minded people.

On pondering the remarkable events of the weekend I've concluded that much of his listlessness and immobility might be the result of depression and boredom. But then there was something more at work this weekend because he has had countless opportunities to engage in fun activities with people and has just not been physically able to do so. Perhaps the warm weather was a factor, perhaps the company. Perhaps with all the kids home and playing with him, I felt comfortable enough to pay him less attention and thereby he felt the lift of my watchful and oppressive eye. Or maybe it was a small miracle reflecting the joyous events celebrated at Easter.

Who knows?

Respite

I think I've reached a watershed moment. I came to a decision tonight and whether I ever follow through remains to be seen, but I think the first step has been taken and perhaps that will make the second one easier.

It was an ordinary day which is both good and bad. Good because there were no surprises and the day unfolded as it always does: get Michael up in the morning, clean him, dress him and feed him all before his medication runs out and he needs to fall back to sleep until lunch. Some mornings it's a race to beat the medication which can last only a few minutes before he succumbs to a near-comatose state for the rest of the morning. Today my caregiver only had an hour to spare early this morning which I greedily grabbed to get out and walk the dogs, so I had even less time to rush about getting Michael up and fed before I set out. The rest of the day was ordinary too, lots of sleep and television, a short walk, a few minutes outside while Michael valiantly attempted to do some yard work before his meds wore off - 10 minutes - but it was so nice to see him enjoying the outdoors. It was a quiet, uneventful day.

But it was a quiet, uneventful day and sometimes that is the problem. Today I had a lot of domestic worries floating around in my brain, nothing serious but as the day wore on and I had so much time to think, these problems loomed larger. I gave them far more attention than they merit. By mid-evening my worries escalated to a near frenzy and I found myself experiencing a rare panic attack. Now, as panic attacks go it didn't hold a candle to Michael's and I do him a disservice even calling my experience by the same name but it did feel like panic. I parked Michael in front of a hockey game and took myself off for a restorative, calming hot bath to shed a few quiet tears and feel sorry for myself, all the while leaving the door open so I could hear Michael, just in case. While there I came to a conclusion: I need a break.

Michael came home from the hospital November 27 and since then, except for a few hours a week of respite, for which I am extremely grateful, I have been at this job incessantly; every morning, evening and all but a few daytime hours. And during those hours we are usually alone together in this big house. I am happy to have two cheerful dogs who seem very pleased to have me chat away to them which is good because that's how isolating this job is; I'm reduced to conversing with my dogs. And they are real one-way conversations I have, something that is both laughable and disturbing!

I have been reluctant to even consider the possibility of taking an evening off because night can be a difficult time for Michael. Evening is when he is most likely to have a mental health melt-down and the night hours themselves can be very troublesome and disturbing. My fear is that by not being here if he has an attack, it might be a more severe one and if he's in institutional respite care I am nearly certain he will go over the edge because that is what has happened every time he has been hospitalized. It is not ego speaking when I say I have so far been the only person to be able to come close to calming his extreme agitations. It is a very severe and dangerous situation and I worry that if I go away for a night or two I will come back to a worsened condition than I am dealing with at present which, after months of adjusting to a heavy neuroleptic drug to control his psychosis, is fairly calm. Do I really want to rock the boat?

But tonight was a rare event for me. Perhaps four straight months of intensive care is finally wearing me down and that's on top of several years of moderate to intensive care. I think I am processing what I already know, that to not take a break from this job could be disastrous to my health. And what's disastrous for my health is disastrous for Michael's health.

So I'm thinking about a single night in a respite care facility for him, and for me, a night on my own. If I stay at home then I can abort the mission if he gets terribly out of control but if it works and he's okay, then I might pluck up my courage and try a night away somewhere. I'd really love to go to my daughter's university graduation in June, a simple overnight trip alone but a near-impossibility with Michael. Then if that works perhaps I'd have the courage to attempt a visit to other offspring in Toronto for a whole weekend.

I'm excited thinking about the possibilities and that is a powerful motivator. But one step at a time and tomorrow I start researching respite care facilities.

Sleepless

It's 1:30 a.m. and I am still awake. This causes me some anxiety because my day could begin very early or my sleep be very disturbed depending on Michael's night. But I did it to myself today. I was hell-bent on getting the income tax forms completed. Why the rush, I can't tell you, but once I embarked on the project I was eager to see the end of it.

I rarely allow much time for intellectual pursuits. By the time my day ends I am usually ready to fall into bed, instantly asleep, probably from succumbing to the numbing effect of the television, Michael's preferred activity, that blares most of the day. He has maybe two or three hours a day where he is ambulatory so the television is his eye on the world when he has to be glued to the couch or wheelchair. I endure the incessant drone in the background, keeping myself busy with the running of the household which involves dozens, if not hundreds, of small tasks every day. If I sit for any period of time with a book or in front of the TV I'm asleep in seconds.

So the intellectual challenge of the taxes at first filled me with trepidation as it did last year, the first year I had ever tackled this household chore. Michael used to do it years ago but when it became very obvious that his cognitive skills had degenerated significantly, I, as tactfully as possible, suggested we hand the whole mess over to an accountant. It seemed especially appropriate to do so at that time since, with his sudden departure from work in 2003, there were drastic changes in our income and taxes anyway, complicating the process for him even more.

But last year I looked at the previous year's bill from the accountant and blanched. We could hardly spare that extra money with Michael's medical costs increasing (even though I now know they provide fodder for tax deductions). How hard could it be? Besides, my brother assured me that even if you screw things up, CRA and Revenu Quebec will sort it out for you. I would hardly say I embraced the task but I did approach it with some intellectual curiosity, resolving that if I really couldn't manage I'd bail and hand over to an accountant.

I plodded through things slowly, doing every family member's forms old-school; pen and paper. I had to. I need to see the numbers spread out before me on the page. I need to have that tactile connection to a task, I always have. I needed the guide books spread out on the table, handy for quick reference. And I didn't trust myself to handle, not only the steep learning curve of doing the taxes for the first time, but also learning how to use a new computer programme. Hey, I still do old-fashioned bookkeeping on top of my onlline banking because I never quite trust the computer.

I got through it and that was even with a broken right wrist that certainly slowed things down even further. The process was not only tactile but painful. And I did a fairly decent job, if I say so myself, with few errors.

This year I resolved to do the same but then my curiosity got the better of me and I
decided just to try out the online programme. Turns out I loved it - so much easier than last year's laborious method, but that slow tactile process certainly cemented the concepts into my slowing brain in a way the computer programme wouldn't have, doing all the calculations for me. That was okay for this year, though, because I at least had a basic understanding of the concepts now and could actually converse somewhat intelligently about things like capital gains and basic personal exemptions.

I immersed myself. The past few days have seen copious amounts of tea consumed and I found myself frighteningly oblivious to my other tasks. Michael was being made to wait for a trip to the washroom or even, one night, for his bedtime routine. When I finally surfaced long enough to pay attention to him, I found him perched on the side of his bed, half dressed, looking lost and exhausted. I had to shut things down immediately and attend to him. He looked up at me with sad, tired eyes, somehow acknowledging in that one look his absolute dependence on me for everything in his life. I felt chastened. I felt as though I had abandoned him for some frivolous affair.

On some level I must have known that I couldn't let this process drag out. This wasn't just a delicious challenge to engage my brain. There had to be a swift conclusion to this task. Better to have a concentrated sniper attack than a long drawn out, distracted affair. Once I got the damned things on their way I knew I wouldn't obsess about them any longer.

So, today was the day of completion, beginning as soon as I could this morning, punctuated by various caregiving tasks but wrapping up with a whoop of joy late afternoon. So satisfying. But clearly I cannot handle that much excitement because here I am at 2 a.m. and I'm wide awake.

What does a girl like me do for excitement? Her taxes.

The Fast

Today was day one for me of the Baha'i fast. It actually began at sunset on March 1 and will end at sunset on March 20 with Baha'is not eating or drinking during the daylight hours, sunrise to sunset. But mine only began today and might not even continue after tonight.

I have been a Baha'i for seventeen years and have never successfully made it through an entire fast. Until a few years ago my metabolism was so rapid that going for more than a few hours without food was impossible for me without passing out. I couldn't drive safely, couldn't function through my busy days with young homeschooled children. I now see some of my children with the same problem, having to eat constantly all day but remaining thin as rakes. I used to be able to eat my husband under the table all the while staying very thin myself. I consumed a lot of calories and burned them all up. To anybody who questioned whether I or my children were anorexic I suggested to them that they come and join us for a meal sometime. (Why are people so comfortable challenging extremely thin people about their weight?)

That all changed a few years ago with incipient middle age and change-of-life. Things slowed down; my life, my body, my metabolism. My kids no longer made physical demands on me so now I really had no excuse. I discovered I finally could observe the fast which was a relief because I had found myself consumed with guilt every year that I consumed my way through the fast. I was painfully aware of every bite that slid down my throat throughout the daytime. My guilt was self-imposed only. My Baha'i friends urged me to relax, not to worry. But worry I did and when I could finally manage to get through at least some of the fast it felt great, restorative.

But things have changed again. Last year I broke my wrist just before the fast and we had a death in the family. Getting up before dawn every day after painful wakeful nights just wasn't an option. And I couldn't do much for myself but had to nonetheless. Feeding myself, doing almost anything for myself became an arduous task so I gave up and once again ate my way through the fast. As a primary caregiver I couldn't take a break from my duties and every task took a long time to complete left-handed.

This year poses similar challenges. My nights rarely allow me a full sleep. If I am not up to check on some problem of Michael's I am usually at least awakened a few times by his yelling and sleep-talking. I wake up fully alert and listen to the monitor that transmits every sound he makes right to my bedside, a mixed blessing. If his noises seem anxious I act promptly because to ignore him if he is in an agitated state means an even more disturbed night calming him down. If he is just chatting fairly amiably to himself and sounds calm I try to drift back to sleep but keep an ear cocked in case things worsen. They sometimes do. So trying to fast and get by on little sleep just didn't seem wise as this year's fast approached.

Then there's the problem of trying to feed myself quietly enough not to disturb Michael or the dogs who, once awake, will then make sure everyone else in the house is awake too. This morning I crept downstairs at 5 am having been awoken by Michael's noises, quietly prepared a cold breakfast and slipped back upstairs to eat it, dogs in tow to sleep on my bed so as not to wake him up completely with their stirrings. I froze with cereal spoon mid-air as Michael made a few more noises over the monitor but I was able to gulp it down in peace and even managed to grab a few minutes more sleep before Michael woke up for the day. But after only a few hours of sleep from his disturbances and little food in my system, I was a bit of a wreck all day. And bad-tempered.

So the fast will have to be a day to day thing, like everything else in our lives, requiring reassessment every morning or even every hour if I have managed to at least start the day's fasting. I'm allowing myself to sleep till I wake up (or Michael does) because for now, adequate sleep is all that gets me through my day most days. And I think I have finally reached the point of not worrying about it anymore. My understanding of the fast is that "it is only a symbol, a reminder" of "abstinence from lust" and that "mere abstention from food has no effect on the spirit" ('Abdu'l-Baha, son of the founder of the Faith).

If there's one thing a caregiver is fully aware of it's abstinence from almost anything that's fun. God will understand if I need my strength from food and sleep to do my work. I hope.

I'm still here

Michael's first words to me this morning were, "I'm still here" with a slight interrogative lift at the end as though he wasn't quite sure. He'd had a relatively comfortable night, nothing alarming but he had started the night a bit uncertainly.

Since an adjustment a few weeks ago in his medication, Michael's anxiety attacks had all but disappeared. I don't understand why since the change was merely a shifting of the timing of one drug, nothing more, so it really could have just been a coincidence. Nonetheless, it was a welcome relief. That was until last night. All was well, watching the Canada-Russia men's Olympic hockey game which had a satisfying finish and, though it ended a bit late for him, he was happy. His medications had long worn off but he was calm. I got him undressed and into bed, tucked him in and started on our bedtime ritual which consists of me reading aloud from a hockey biography and then spending a long time doing the prayers that have become an essential step to ensure a calm night.

Michael has only recently turned to prayer and I am his voice since he can never remember or read independently the words. I am happy to oblige. It is a peaceful time and having missed the step a couple of times and borne the consequences of a restless night for him, it is something I am motivated to do. But last night I had to jump almost straight to that step after abandoning the book.

I had started reading the book as always, but after a paragraph or two he suddenly stopped me. I looked over at him and he was clearly agitated. I checked his blood pressure - definitely elevated but not dangerously so yet. He had difficulty articulating his problem but it seemed that something about the subject's marital infidelities really bothered him. 

Michael is one of the most morally driven men I know. He is honourable, loyal, kind, honest, loving and utterly trustworthy so I didn't understand his concern. What finally came out was his remorse over what he considered "philandering" during his university days and, specifically, not sticking with a girl he'd met who became very ill. I assured him that as a young man he was probably no worse than most of his peers at the time, if not a million times better if his later treatment of women was any indication of how well he probably treated the females in his youth. Then his anxiety increased as he worried about how much he was hurting us by being ill. I did my best to assure him that we loved him and were far from hurt by his condition, just deeply saddened and worried about him. His worries were like a ball in a pinball machine, zinging about in a seemingly unconnected crazy pattern. I had given him his medication some ten minutes before, one of which is an anti-anxiety drug called clonazepam that works wonders but takes from half an hour to an hour to have its calming effect. So we embarked on prayers, holding hands, all the while I was desperately willing his pain to disappear.

As is the way with drug-induced calm, it hit suddenly. I could see him visibly relax. I didn't bother to recheck the blood pressure because I didn't want anything to alarm him now that he was calm. I kissed him goodnight and took myself off to bed not really worrying anymore about the attack except to stay awake until I could hear him snoring peacefully. Any time I awoke in the night I could hear his steady breathing, obviously sleeping.

But when morning arrived he had obviously believed he would not survive the night and I suppose his anxiety was triggered by a perceived need for atonement. It's a strange aspect of this disease that when his anxiety hits he becomes convinced of his imminent death. I have seen it many times and no longer pay much attention to his predictions. So far, obviously, he has always been wrong. It is now later in the day and he has little or no recollection of the episode, thank goodness, and he is back to being happy.

It is not an easy thing to witness because there is little you can do to calm the sufferer besides administering drugs and prayers. And it's timing is completely unpredictable, a bit like that pinball machine.

Parkinson's Crisis

Until recently I had never heard the term Parkinson's crisis or acute akinesia as it is known in the medical literature. Now this is strange since by my reckoning we have had at least two such experiences, but I never knew the phenomenon had a title or was recognized as a normal but frightening development in many patients with an advanced case of the disease. It was a nurse at the little hospital where my husband spent a miserable week in November who first mentioned it. She simply asked if Michael had ever experienced such an attack to which I responded no, having no idea what she was talking about. It seems to me that most days in the life of a Parkinson's patient present crises that must be faced, but they become so commonplace at this stage that one becomes rather inured to such things, so inured that I am often afraid that I will not know when to respond to a true emergency anymore.

A Parkinson's crisis or acute akinesia is an attack of severe Parkinson's symptoms that does not respond to the usual drug therapy and usually lasts a few days or weeks. It is more severe than the usual daily fluctuations in drug response experienced by a Parkinson's patient. Interestingly, an attack can be triggered by a surgical procedure (i.e hospitalization) or "gastric stasis" which, from what I can ascertain, is a slowing down or stoppage in the digestive processes, characterized by nausea and constipation. Acute akinesia is characterized by extreme rigidity, lack of response to stimuli, overwhelming drowsiness; in fact it is described on one medical website as a "much-feared complication of Parkinson's disease" and in another journal, "a life-threatening complication of Parkinson's disease (PD). It is unlike the "wearing-off" phenomenon that occurs when dopaminergic drug levels decline and responds to dopaminergic rescue drugs. Acute akinesia may be a clinical entity distinct from the previously described PD motor fluctuations" (NEUROLOGY 2005;64: 1162-1169).

Michael's neurologist has never discussed this phenomenon with me despite the fact that after a mild heart attack in February 2007, I believe Michael had such an attack. Michael was hospitalized for six days to undergo an angiogram, angioplasty and the insertion of two coronary stents. He was forced to be there that long because he entered the hospital on a Friday morning and, not being deemed an emergency, was forced to wait until Tuesday before the overworked surgeon could see him. What bad planning on our part. Word to the wise: If you have to have a heart attack, you might want to have it early in the week or else plan to have a really bad one if you want to be treated immediately near the weekend.

So Michael had lots of time, in fact four days before his procedure, to sink into the abyss of extreme psychosis that I have since learned is a fairly common problem with advanced patients. The hospital staff seemed unaware of the severity of his predicament. In the emergency ward they had him down as a sufferer of MS until they were duly corrected by me. On the cardiology ward they thought he was suffering from Alzheimer's disease -because of his now extreme psychosis - and alcoholism with a bad case of the DTs because his dyskinesia ( the involuntary movement and shaking Parkinson's patients have to deal with) was by this time also extreme. Apparently nobody ever reads a chart at this hospital.

His psychosis escalated to the point where he became aggressive and hyperactive prompting the hospital staff to sedate him heavily with a drug called Haldol (which I have learned should never be given to Parkinson's patients as it can exacerbate their symptoms permanently) and bind him to his bed, flat on his back, essentially imprisoning the poor man. When we visited him on the Sunday night, day three of his incarceration, he was certain of imminent death and was hallucinating wildly. He was beyond terrified and sad. I visited him with two of our kids and they were horrified at what they saw. I quickly demanded answers from the staff about his condition and they were unperturbed, stating this was a normal state for many presurgical patients. Right. I left the hospital feeling a rare sense of panic and barely slept that night.

Michael did calm down enough to have the minor cardiac surgery and was finally sent home on the Thursday. I was worried how we would cope because his delusional behaviour was worse than I had ever seen it. But on returning home Michael sank into an even more worrying condition. He became what I described as catatonic. He didn't respond to his medications (one of which, by the way, had been suddenly withdrawn by the neurologist in the hospital in an attempt to control the psychosis - it didn't); he was stiff, in pain and delirious. But it was the weekend again and therefore no medical professionals were available on the phone, and I was determined he would not go back to hospital after the nightmare of the previous week. In an act of desperation I gave him a dose of a medication that the doctor had withdrawn completely in the hospital because, to my untutored but logical mind, perhaps the sudden withdrawal of that drug was why he was in this state. Miracle of miracles! Within half an hour of administering that drug, amantadine, Michael was up and walking around as if nothing had happened. On researching this drug I learned two things: Abrupt withdrawal can cause Neuroleptic Malignant Syndrome (NMS) which closely mimics a Parkinson's crisis, and this drug is actually used to treat cases of acute akinesia, so my instincts were good.

On consulting with the doctor after all this drama had passed, he still made no mention of Parkinson's crisis, in fact gave no explanation of the events. I was left in the dark but grateful that Michael had made a comeback.

Fast forward nearly three years to November 2009 when a long spell of hyperactivity and extreme psychosis land Michael in hospital again, mostly so I can get some much needed sleep. He started to spiral even more out of control in the hospital, for which I was somewhat grateful because at least then they would see what I had had to deal with for weeks. And it seemed they could not deal with him, calling me frequently each day to "try and calm him".

The only physical problem the doctors could come up with, after a multitude of tests, was severe constipation. After the heart attack crisis, I had taken over most aspects of Michael's care but one area I had kept out of was the toilet. I naively thought that Michael would apprise me of any problems in that department. What I didn't realize was that his mental state had deteriorated so severely that he no longer could remember what had happened five minutes before let alone whether he had had a bowel movement that day or even that century. It turned out he had been constipated for probably weeks and that could have been the explanation for the descent into the psychosis.

Did you know that the bowel is known as the second brain? Apparently good colon health means good mental health, for all of us not just Parkinson's sufferers. It makes me think of that song, "The arm bone is connected to the shoulder bone.." or something to that effect. In Michael's case the colon bone was firmly attached to the brain bone. While he was in hospital the staff had promised they would address the problem but it was apparent when I finally got the poor man home that absolutely nothing had been done on that front and he was probably worse than ever, prompting all kinds of intervention on my part that I never considered a possibility when reciting my wedding vows.

So Michael returned home and once again I saw him plummet into another of these catatonic states, this time far worse than the first. In the morning he was so rigid that moving him at all elicited screams of pain from him. His medication was taking hours to have effect if at all. He was not only speaking in his usual slurred fashion but what words were coming out were often garbled and mixed up making me think he had had a stroke. He was barely responsive, barely awake. I was sure he was dying and I prepared the kids. None of the medical professionals working with us at home contradicted my assessment.

I furiously searched for any information on what he was experiencing and finally came across the description of what I was now certain he was suffering from: acute akinesia /Parkinson's crisis or it's more frightening cousin Neuroleptic Malignant syndrome which is nearly identical in its manifestation except for a few more nasty symptoms such a hyperthermia. NMS can be a rare but horrible side effect of anti-psychotic medications such as the Clozaril Michael had been prescribed to treat the psychosis, or when a drug like amantadine, as previously mentioned, is suddenly withdrawn. So it could have been either phenomenon given Michael's history: constipation, hospitalization and neuroleptic drugs.

But still no enlightenment from the doctors. It will be up to me to bring it up next time we meet even though I have already had a discussion with the visiting family doctor who knew nothing of these phenomena but promised to consult with the neurologist. What alarms me the most is that I now know this condition is not only frightening but also potentially fatal. Now I am even more committed to keeping him out of institutions as long as I can and to monitor the bowel activity closely since both factors are the main causes of this horrible end-stage complication.