Therapy

I have never availed myself of the therapeutic services of a psychologist, though in the past few years our local public health service has given me the opportunity if I need it. Who has the time when you are a full-time caregiver? When I do have time off provided by the same public health service, I prefer to go out and do something fun instead or even just deal with household chores, also therapeutic, allowing me to feel I am controlling at least small aspects of our lives.

So on a recent Friday I took one of my therapeutic respite moments and met an old friend. We were going to see a movie that afternoon but she had heard about a psychic fair she really wanted to attend. Did I think we could do both? Well, my time was limited and on thinking it through I realized that going to a movie wasn't the best use of our time. After all we'd be facing a big screen for two hours and would have to be quiet, a tall order for us when we get together. I suggested we do lunch instead and then, if there was still time, go to this fair that opened later in the afternoon. It turned out I could only manage 30 minutes at the fair but it was enough time, I hoped, to ease my friend into it.

I am not a follower of psychic phenomena. It's not that I don't believe in it; I have had too many of my own interesting experiences to discount it. I feel it can be dangerous territory for someone who is vulnerable and suggestible; some information to a troubled mind could be difficult to process and might be misinterpreted. I know that in my case, signs that I have been certain of have turned out to be nothing more than idle fancies. But I was willing to tag along and I was curious.

As I had only a short time and my friend was undecided which psychic to choose (there were over a dozen at the fair making all kinds of claims) I said I would go first, pick the first psychic who wasn't busy and my friend could sit in and observe, this being her first time too consulting a psychic. For me it had all the feel of playing Ouija board with my friends as a kid, summoning up the names of the boys we would marry, or the time at boarding school at the age of 13 when my roommates and I had a seance with the lights dimmed and a fluorescent clock in the middle of our circle as our "candle" (no flames allowed in the dorms for obvious reasons) . That experience scared the living daylights out of me because we had a very convincing girl serving as our "medium" and she fell into the role with great gusto. I swore off the practice right then and there.

So it was with this attitude that I sat down for my reading. I was going to offer no clues to this woman who asked me to shuffle the tarot cards before she laid them out on the table. Her brow furrowed as she announced my relationship with my husband was troubled and that I had a very great need to make a trip to British Columbia. Well, at the mention of BC she had my attention.

A trip to BC has been on my mind for years ever since my sister became so ill five years ago with cancer. We had been trying to get out there for the past three years but preparation for a possibly life-changing surgical procedure Michael was to have took two whole years to finally unravel. We had stayed close to the phone all that time awaiting word on a date for this operation called Deep Brain Stimulation only to be kept in the dark and finally told that he was no longer considered a good candidate. We had wasted all that time. When I heard in September that my brother-in-law, my sister's primary caregiver, was also ill I immediately booked a cross-Canada train trip to leave mid-October, finally feeling we had the freedom to do so. I had only an inkling how ill poor Fred was and he wasn't to be diagnosed with terminal cancer until late November just a month before he died.

It was to be my first visit back to my beloved BC in thirty years. Finances, four children and my morbid fear of flying had prevented an earlier visit. Besides, my sister and her family had come out to visit us regularly every year until her latest illness so at least we were not deprived of their company.

That train trip never happened. At least not all of it. We made it to Winnipeg after two nights on the train but we had to abort rather dramatically and fly home because Michael's illness suddenly worsened and it was obvious that a continuation of the trip would be disastrous. My options were to carry on with the trip or return home, but given how sick Michael was, I knew I needed to get him home immediately and I couldn't inflict his illness on two already very sick people. At that difficult moment climbing aboard an airplane was the only option so I had to swallow my fear and just do it.

I was heartbroken at not seeing my sister perhaps for the last time. What I didn't know was that it would have been my last visit with Fred too. So when this psychic mentioned BC I was suddenly all attention. What she did not know at that point was that Michael is so ill and the tension between us is simply the tension that exists when a spouse has to slip out of the role of wife and become the nurse. Certain aspects of an intimate relationship must change but there is certainly no animosity between us. As for BC, I had long ago made my peace with not going out there, at least not yet and probably not before my sister dies.

The psychic continued to insist on my troubled relationship with my partner and spoke of an imminent separation between us, that my husband would go away and his departure would spell financial difficulty for me. At this point I offered that Michael is chronically ill but gave no further details. Her furrowed brow cleared and she suddenly seemed to understand. She told me my husband would need to go to a long term care institution and that would be the cause of our financial strains. This decision would cause me a great deal of stress, she said, because he would live a long time and this would be a long term commitment.

During Michael's most recent crisis and hospitalization, he was convinced he was dying. A doctor said that even though there were no physical indications to back this up, sometimes a patient has a sixth sense about these things. All of us braced ourselves for this; we did a lot of grieving in anticipation. In fact through the past three years , with Michael's TIA and heart attacks we had long ago accepted this possibility and had many occasions to prepare ourselves. So when Michael came home from the hospital this time and in worse condition than ever, we were convinced his time was limited. I immersed myself in his care, resumed my role as his sole caregiver with only a few hours of respite a week, feeling I could manage this at least in the short term and would reassess my capacity when things settled down.

But the psychic was speaking about very long term care. Up to that point I had not really given it much thought, not being able to think that far ahead. With advanced Parkinson's Disease caregiving is a very in-the-moment kind of commitment. You never know what the next hour will bring, let alone the next year or more.

Now, I do not put much stock in this woman's predictions but what she offered me was the opportunity to face the very real possibility of a much longer commitment to this disease. I had to face my inadequacies, my probable inability to carry on with the level of care I have already been providing and I had to come to terms with the very difficult decision I might have to make about handing over his care in the not-so-distant future.

I came home feeling rather shaken at such a prospect but the way I deal with any problem or crisis is to come up with a feasible plan. That night I sat down and looked critically at our financial situation and devised a strategy that would allow me to pay the heavy costs of institutional care and, at least in the short term, keep my living circumstances as unchanged as possible. I felt confident that it could be done with careful management. The emotional toll of having to let go of his care would be a more difficult proposition but as I have learned in the past, having a plan and a sense of control over a situation, no matter how small, can go a long way to easing the emotional response to a crisis.

Whether I believe this woman's prediction is immaterial. I do believe that she is an intuitive and, with my supplying a few key details, was able to mine the depth of my subconscious concerns that I had not yet faced. By the end of the day I had steeled myself for the long haul recognizing my limitations and acknowledging that at some point I might have to let go of Michael's care and by doing so face the difficult consequences. I felt gratitude to this woman whose name I cannot even remember. She provided me with a much needed therapy session that gave me a sense of control over the few things that a person can hope to control in this life. In the meantime, back to the task at hand.

Slip-sliding

Since Michael returned from hospital on November 27, he has made a slow and steady recovery back to relatively solid mental health even though his physical symptoms of Parkinson's Disease are much worse. It seems that the powerful neuroleptic drug administered to control the extreme psychosis he was experiencing interferes with the body's ability to process the PD drug that allows more fluid movements. So Michael spends most days in and out of sleep, but some days he is lucky to have more than a couple of hours of mobility.

The past two weeks he has improved to the point that we have actually been able to make a few little trips out in the car, attend his Tai Chi class for a few minutes and take the occasional short walk down the road, though only yesterday we had to abort a walk when his drugs suddenly gave way and he was frozen by the side of the road. I started to run to get the car to take him home but a kind neighbour was driving by at that moment. She stopped to get Michael into her car. Mind you, even that was a challenge for poor Michael who couldn't easily get into her vehicle, his rigidity so severe, causing traffic to back up on our quiet little street. But minutes later we got him home and safely back into his wheelchair. That cycle of drugs gave him a mere 15 minutes of fluid movement.

Once again I am reminded that this disease is not on a straight trajectory. It is always a roller coaster ride from day to day, minute to minute. We are still not certain what caused the deep fall he took into severe mental illness beginning in early October. We do know that once his powerful drugs took full effect (three weeks) he was given a reprieve from the nearly constant psychosis. But the past few days have seen another little dip into the abyss. What could it be? He complained yesterday of mild cold symptoms and in the past that has been enough to render him more physically disabled for a few days. It might be that. His night time ravings have been focused on the disaster in Haiti; he thinks we are there and in the midst of terrible horrors. That whole tragedy has been enough to unnerve even the most sanguine among us so it's possible that is the cause.

What alarmed me last night was hearing him moving around a lot in the night (I have a baby monitor that allows me to hear every move he makes). At first I waited to hear if he called out for me as he has been doing the past few nights, in a state of high anxiety. There were a few minutes of rustling around but when I heard the floor boards squeak I was down the stairs and in his room in record time. He was out of bed!! Now to most that might not seem like much of anything, but for the past two months since his return from hospital, Michael has spent every night frozen in one positon, on his back all night, and by morning he needs great assistance to even sit up. But here he was at 1:30 am fully functioning, wandering around his room after having climbed OVER the rails of his hospital bed. No easy feat for the most fit among us let alone for someone with advanced PD many hours after his last dose of medication. The worrying thing about him now able to get out of bed himself in the middle of the night is that his room on the main floor is close to two outside exits, an easy escape if he is in the throes of mental anguish and delusions. My hope is that our two dogs, who sleep outside his room, would bar his way before I could reach him but there is no guarantee of that.

I spoke to our nurse this morning and warned her of this new problem which may never happen again but I am alarmed enough to be on high alert tonight. My hope is that we are not slip-sliding back into the black pit. At least this time I have strong medical support behind me and at the end of the phone line any time of day. Great comfort I can assure you.

The sad passing of an unsung hero

On December 26th we heard the sad news that my brother-in-law Fred had died in the early hours of Christmas morning. My sister and her daughter spared us the news until the next day probably knowing our Christmas day was a busy one. Nonetheless we did hear on Christmas day via an email written the day before that he had checked himself into the palliative care facility that day, convinced his time was near. The various people in his life humoured him because he wasn't showing the signs of imminent death, but he remained firm on the matter. And leave us he did in short order the next day. He had been suffering from lung cancer for a short while but was not expected to die so quickly.

His death resonated with me. Fred had been a dedicated caregiver for many years to my dear sister who has suffered from many ailments throughout her adult life but most recently with a very nasty form of cancer. The past three to five years have been particularly difficult with my sister in and out of hospital for cancer treatments, lengthy hospital stays for fractures sustained from bad falls as a poorly defined neurological condition rendered her very unstable and ultimately confined to a wheelchair, as well as a surgical procedure to clean up an old problem in her skull dating back to her first major medical problem, an advanced brain tumour in 1977. My sister has a tremendous will to live and has frankly outlived all predictions of her mortality. She has befuddled the medical community ever since that first diagnosis. In fact, when faced with her current neurological problems, the doctor merely shrugged and said that no one had survived what she has survived.  He had no idea what was wrong with her and made no effort to investigate.

Of course everyone has been very concerned over the years about my sister's health. She quickly recovered from the first brain tumour and returned to work a few months later, all the while caring for her infant daughter born just a couple of weeks before the tumour was discovered. Ann had to have two more operations to remove the recurring tumour and, in the end, was treated with radiation therapy. We have all watched her with awe, carrying on her life with complete grace and strength. She has had a very full life so far.

But in the background was the husband, the unsung hero of this tale. Fred valiantly forged on, with his wife back and forth to the city hundreds of kilometers away for treatments and surgery over the years of their marriage. Fred held down the fort, caring for their young daughter, juggling a busy career as an educator, and managing the household while Ann recovered each time. I simply cannot remember over the 33 years of her ill health how many crises there have been, obviously too many for anyone to keep track of.

Fred no doubt got grumpy through all these ordeals, though as far as I know their marriage remained strong. They stayed together, need I say more? But in the past few years the job became very onerous and in the last couple of years he had to give up everything of his own to care for his very sick wife. Once in a while he would have a day of respite and dash off to the nearest small city to let loose, returning in the evening to carry on with his duties. In the past few months he apparently became quite crabby and a bit of a nag but it was all explained a few short months ago when he first started to manifest the devastating symptoms of his disease.

Now, what is so remarkable about Fred's passing is how quietly and resolutely he did it, exactly how he wanted to. He refused all medical intervention except for a few medications to relieve some of his symptoms. Over a year ago when my sister's cancer returned for the third time doctors gave her less than a year to live telling her she would not see Christmas 2009. We all prepared to lose her, we all braced ourselves for the inevitable, but we all believed Fred would live to mourn his wife and perhaps enjoy a few years of freedom from the daily inescapable grind of caring for the very ill.

But as soon as Fred learned of his prognosis a few short weeks ago, he made up his mind. He had watched his dear wife embrace every single treatment option the medical community threw at her and subsequently suffer the side effects. Ann never complained to us about how ill she must have felt through three separate bouts of chemotherapy,  but I'm sure Fred knew only too well how bad it must have been, being on the front line all that time. Ann chose to pursue those treatments;  Fred had to accept all the consequences and watch his dear wife suffer. So he chose no treatment for himself. He chose to spare his daughter, their only child, the pain of caring for him and for her mother all at once. And on some subconscious level he must have thought he only had to make it as far as Christmas, that being the latest Ann was expected to live.

I do not think that either approach to serious illness, to pursue treatment or not, is right or wrong, only different, but I do think as a caregiver of the seriously ill one has a completely different perspective on life and illness. Survival is dependent on not just good medical care but especially excellent constant home care by someone you love and trust. As I have seen with my own husband, only my care seems to sustain him and any institutional care, no matter how excellent, does not measure up to loving care. In fact he deteriorates quickly anywhere but home. But sometimes that caregiving can cost us the ultimate sacrifice. Fred could have chosen to live longer but he knew he would have been a burden to all those involved. He simply couldn't do it.

His daughter saw his passing as quiet, undramatic and dignified. I saw it as the heroic last gesture of a man who had given everything to contribute to his wife's longevity and well-being. And now I am sad to report that my sister's health seems to be failing fast. Her tower of strength is gone.

Freedom

Loss of freedom, as we have known it, is a common adjunct to any disease. In the case of Parkinson's Disease it is the slow degeneration of physical capacity that limits freedom, and later in the disease for some, the cognitive impairment that limits one's ability to make rational decisions about anything, including what clothes to wear.

Yesterday Michael displayed a rare moment of pique which I took to be a good sign of some improvement after weeks of severe mental illness, delusional behaviour, hallucinations, psychosis. After a hellish few weeks of rapid decline in his mental health, triggered by unknown causes, Michael was hospitalized. This was mostly to give me some respite but also to see him stabilize on the new powerful drugs being administered in an attempt to rid him of his severe psychosis. The hospital stay unhinged him as it always does. He desperately wanted to come home; in fact he packed his bag every day and set off down the hall of his hospital ward determined to leave. He did not understand he was in a hospital and that I needed a few days break to catch up on many nights of lost sleep. He believed he was being held prisoner against his will somewhere sinister. He was right about being a prisoner. After a day or two of outbursts from him, my normally very quiet, cooperative husband had to be heavily sedated and tied to his bed. This has happened before in the hospital so I wasn't particularly shocked to see him bound to his bed but it did motivate me to gather my strength and resources to bring him back home as soon as I could get things sorted out.

The hospital stay, though very troubling for him, did serve a useful purpose. Michael had resisted any change in his home life, didn't want to consider a move to the downstairs bedroom that would make life easier for both of us. He has always had difficulty with change and this small change loomed large in his mind as yet another loss of his freedom. Upon returning home, I had no choice but to set up a hospital bed on the main floor which allows full wheelchair accessibility. We have managed over the past few years to refurbish our house to render the main floor fully accessible for him, including a ramp to the outdoors and a washroom with roll-in shower. Michael was so happy to be home that he was prepared to accept any conditions in order to do so.

Michael became the model patient at home, grateful for things that looked familiar and feeling better mentally on the new drug regimen. His first weeks at home were spent mostly sleeping, watching TV, in short, doing very little after the extreme hyper-activity of the pre-hospitalization break-down. The new drugs rendered his Parkinson's medications less effective, so most of the day was spent immobile and dopey, a condition I welcomed after the weeks of manic behaviour . I actually managed to log some hours of sleep and was feeling more rested even though his physical care needs throughout the day had increased significantly. I was grateful for having spent the past couple of years improving my upper body strength because I was using it daily.

As he stabilized over the weeks, though, he began to sleep less and the medications started working faster and longer throughout the day. Inevitably that led to restlessness. That worried me. Were we beginning another downward spiral into the madness of before? I was beginning to see more anxiety creeping in especially around what I call his witching hour, the time around dusk that has been especially problematic for him for some time. At least we now had pharmaceutical ammunition to calm the wild beasts if necessary. But how to keep him engaged during those hours when he was feeling better? The problem, that I was so relieved to be free of for a while, was that Michael, who used to be so very competent when it came to mechanical fixes, household repairs, just about anything, in fact, still believed himself completely capable of all these skills. He absolutely lacked the ability to judge his competence anymore. So, just like with a toddler who is learning about his environment, I had to watch him constantly, trying not to let him know he was being shadowed and observed in case he hurt himself or put us in any danger. He would, for example, try to tinker with the broken lawn tractor and run the engine with the shed door closed, or try to rewire the house if the switch he thought operated a light didn't turn it off.

Yesterday he was feeling well enough to try his hand at some of these tasks again and I, of course, feeling panicky, followed him out to the shed just in case. When I stopped him from trying to fix the snowblower he got irritable and walked away from it into the yard. I went back into the house determined to keep an eye on him surreptitiously from inside, aware that his medication would soon wear off, leaving him at risk of collapse. But it was so nice to see him moving around so freely and comfortably after weeks stuck to the couch or the wheelchair.

Suddenly aware that I couldn't see him out the window I dashed out to check up on him. No Michael! The dogs, restricted to our property by invisible fencing, sat in the driveway looking wistfully down the road. Newly fallen snow showed boot prints heading down the driveway. I ran but couldn't immediately see him down our short dead-end road. Then there he was, rounding the curve in the road heading home. Boy he's fast when determined! I caught up to him trying to contain my annoyance at not having been informed about his walk. His annoyance at having every move monitored was written all over him and he barely acknowledged me. I assured myself he was safe then ran home ahead of him trying to give him the freedom he needed at that moment. Within minutes of entering the house his medication suddenly gave way, as it always does now, and he collapsed into his wheelchair that I had positioned right by the front door just in case. His body language once again was that of the crushed weakened man he is when his medications wear off. But he had enjoyed a moment of self-determination; he had decided to go on that little walk without consultation and enjoyed a few moments of freedom.

Parkinson's disease for sufferer and caregiver is one of constant shifting and change from minute to minute, day to day, requiring a flexibility to change plans immediately if necessary all through the day. There are moments when Michael is very lucid and I enjoy the freedom of a short rational, articulate conversation with him. There are days when his medications work fairly well and we can enjoy the freedom of a short walk together, and he can get himself around the house at times during the day without having to rely on me to push him or transfer him. There are times when he can remember how to turn on the stereo and enjoy the freedom of listening to the radio news or to his music that almost always moves him to tears. There are times when he can offer advice on how something works and actually articulate it and feel the freedom of being of service in the household. But I never know when those times are and the challenge before me every day is to recognize them and allow him the freedom they offer.

Freedom is relative. I am so used to the life dictated by this disease that freedom comes in the form of a day not controlled by psychosis, a night of uninterrupted sleep, a morning when Michael has slept in and I have woken naturally and can enjoy a few minutes alone in the house before the duties of caregiving kick in. A quiet cup of tea, an untroubled walk with the dogs.

But the most magnificent freedom I have experienced lately has been granted to me by Michael himself. I have been the sole follower of the Baha'i Faith in my family and have therefore worshipped quietly, privately, almost apologetically. Michael had never shown any interest though he was always very respectful of my choice. I, in turn, never forced my faith upon him. But Michael's recent descent into the abyss of mental anguish found him crying out for solace of some kind. Drugs work wonders when the crisis is extreme but for the many daily small anxiety attacks I recommended my drug of choice, that of prayer. He has found it to be very effective for calming the moderate wildness of his mind but, because he can never remember the prayers I give him, he asks me to say them every night before going to sleep. Last night found me singing loudly at his bedside, Michael following along quietly. Afterwards I felt such exultation for the freedom of being able to belt out my prayers for once without self-repression. I thanked him for the joyous freedom he now offers me.

Drugs or no drugs?

Yes, denial was the mainstay of Michael's coping techniques. Though while he slipped into denial and refused to speak about his condition outside the family, I had to slip out of it. It was like the passing of a baton; Michael had had enough for the time being sweating about what was wrong with him and I, now having a task, plunged into finding out what I could about Parkinson's disease.

Back then, research, for me at least, meant doing it the old fashioned way of finding books and reading them. I realize now that many of the books I consulted were outdated. My computer savvy at that time was sadly lacking, perhaps even non-existent and I cannot remember if it played a role at all in my research. I do remember, though, finding literature somewhere on the drugs that were being prescribed to Michael and being horrified at the lengthy list of side effects. We were both unfamiliar with pharmaceutical descriptions and didn't realize that the drug companies have to list every single side effect reported, no matter how minor or how rare.

Up to that point neither one of us had ever needed any serious pharmaceutical aid and I was generally opposed to such things in principle, certainly not because I actually knew anything about them. The most potent drug I had ever taken was a painkiller for the occasional headache or menstrual cramps and Michael even less. Both of us had indulged mildly during our heady hippy days in recreational drugs but almost so little as to be insignificant. Mind you for someone who was so concerned about what I put into my body when it came to food and prescription drugs I was ridiculously naive about the danger of recreational drug use back in the day. I think we all were back in the '70's and perhaps many people are suffering neurological damage now as a result of dirty drugs. Believe me, I am acutely aware of the glaring hypocrisy I displayed. Nonetheless, I was still feeling very righteous about the drugs, believing fervently that there must be a safe alternative therapy. I remember begging Michael to avoid the drugs, claiming that they would make him very sick. In my estimation he wasn't technically sick, only slightly disabled like having a mild sports injury. I was convinced the drugs would destroy him. So Michael, the loyal and accommodating husband he is, agreed.

I set about researching alternatives. Well-meaning friends offered special massage, healing hands, acupuncture, homeopathy just to name a few. Michael obligingly followed every lead I set before him and all of them failed him. One path we did pursue together that seemed promising was the practice of Tai Chi. I registered us in an intensive programme two evenings a week and we stuck with it for about six months, but the burden of childcare for a still young family wore me down and I pulled out. I've learned over time that in matters of health, my husband needs me right by his side, so as soon as I pulled out, so did he. I have since heard from Tai Chi experts (he has resumed the practice, by the way, 15 years later) of cases that have had tremendous results reversing some of the disability, but I fear Michael's continuation of the practice came too late for that. It requires tremendous dedication, I believe, something Michael doesn't feel for Tai Chi. For him now it is mostly a social outlet with mild exercise benefits. I can't help but think his condition might be better if he had kept it up but there is no point in wasting time over that.

For two years Michael struggled unmedicated. His neurologist who was becoming increasingly alarmed at Michael's refusal, urged him to go for counseling which he did for several weeks. I have no idea what he discussed in those meetings but the end result was his agreement to start the drug therapy. I think Michael needed to be assured by someone else that his wife wouldn't hate him for his decision, and that decision was his to make, not mine. By then I too realized how much my poor husband was suffering just to please me. Watching him walk to the bus each morning for work was torture. He often said getting through his day was like running a daily marathon.

Of course I accepted his decision but I did struggle with my sense of guilt over denying him the freedom he suddenly felt as soon as he started on the drugs. Michael responded really well to the medication and in the early days at least suffered very few side effects. Mind you, now that I see the long-term damage the drugs have done, perhaps waiting two years gave him more time at this end of the disease. It is ironic actually how much I rejected drug therapy in the early days compared to how I embrace anything that will improve Michael's quality of life now.

The beginning of drug therapy in 1996 brought a period of wellness and normalcy to our lives and allowed both of us to forget about the disease for a few years... almost. Michael continued to see his neurologist, followed whatever drug regimen he prescribed. For my part,  I was relieved to let things go for a while and focus on the busy task of raising four homeschooled children. We had many happy, relatively care-free years of enjoying family life. Michael continued to travel extensively for work and play hockey and soccer at a fairly advanced level. He coached nearly all our kids at soccer and became well-known in the community for his dedication and gentle approach to the sport.

The drugs were a blessing and seemed miraculous, at least for a while. I am grateful for those years.

Early days

It seems my once very good arithmetic skills have deteriorated or maybe it's just that I cannot fathom the enormity of the duration of this disease, how long it really has been. I was lying awake last night after yet another wake-up call from Michael (remember when our children were infants, waking up every two hours and how hard it was to return to sleep after several interruptions?)  thinking about 3000+ days and how long that felt. Wait a minute... 365 days x 15 years is 5475 days - way off base. Wow, now I'm really wide awake.

Michael was diagnosed with PD in 1994. I remember the lead up to that life-changing day. Michael had been alerting me to various odd symptoms over the many months preceding his diagnosis and in some cases seeking a doctor's opinion. One was a vague ache in the middle of his right front torso, just beneath the ribcage. This was a couple of years before D-day (diagnosis day) so not much else was manifesting at the time and the doctor dismissed it as nothing, as doctors are wont to do when they have no clue. We didn't worry about it any further.

But then Michael noticed that his handwriting was getting smaller and more difficult to produce. Michael had always been so proud of his beautiful handwriting especially after nearly failing grade 1 for illegible scribbles (Who fails grade 1 for poor handwriting?? I hope times have changed!). Then the weakness in his right arm and the stiffening up of that limb as well as the slight drag to his right leg.

To all of these things I was oblivious or dismissive. At the time we were homeschooling four kids and the youngest was only a toddler. I was consumed with very busy days and couldn't or wouldn't admit that there might be something wrong with my ever-strong husband. Michael had been promoted to a new job and was feeling the strain of that along with several months of mandatory French training which drained him. I put all his quiet complaints down to stress. That is until one day (and he has completely forgotten this) he fell to his knees at my feet in the middle of the kitchen and cried that he didn't want to die. I was bewildered, to say the least, having no idea the torment he had been experiencing.

Over the months preceding D-day, he had been quietly researching his symptoms and had narrowed his possible diseases down to three: Lou Gehrig's disease, MS and Parkinson's. I was still in denial and figured he had nothing more than a sports injury, something I had never been terribly sympathetic to, claiming they were all basically self-inflicted. I did have to stop and re-evaluate though when he returned from the GP one chilly day in November announcing he had an immediate consultation with a neurologist. As has always been our way, we discussed it very little and waited for that day. Michael did not want me to accompany him, so that morning I furiously threw myself into cleaning a friend's house, a friend who lost her own dear husband a few short months later to a brain tumour. Michael returned home at around noon, dropped the Parkinson's bomb, we both cried a few minutes and then he valiantly took himself back to the office. I was left feeling stunned and somewhat hurt that he just fled back to work, but I realize now that the last thing he needed was a serious watershed; he needed to carry on and immerse himself in denial, at least for the short-term.

I cried alone for a week, feeling sorry for my husband and myself. I'm not sure for whom I felt more sorry but I clearly remember having a serious chat with myself, urging myself to just get on with it. Tears are a good release but, for me at least, not healthy to indulge in for too long. So I set about carrying on with our busy lives and embarking on informing myself about this mysterious disease. As for Michael, he left me to the research and for his part carried on with work, sports and denial.

And denial is what carried us through those early years. It is a powerful support when appropriate. It allowed us in the short-term to gather our reserves for the next stage.

Day 3285

It's strange to be starting this account so late in our journey with Parkinson's disease because so much has happened, so much drama has already unfolded in our lives. But I was inspired by the movie "Julie and Julia" that I watched last night with my ailing husband and thought, if nothing else, this could be an outlet, a kind of catharsis, for me. In it a main character starts a blog to share with the world her cooking adventures and reaches out to many. Simple as that.

I chose the movie"Julie and Julia" for a reason. When making a selection I usually do so with consideration for Michael's tastes which run to thriller and adventure films. I'm quite a fan of such films myself so it is never a sacrifice to do so. I often save the more sensitive films for my own viewing, knowing that Michael would usually be bored silly.

But that was in the past. Michael is now into year 16 of this disease. Diagnosed in November 1994 I have calculated that we are roughly 3285 days into this wasting disease. That is a very rough estimate since doctors usually add a couple of years onto the date of diagnosis because most patients have been displaying mild symptoms for up to two years before seeking help. That was certainly Michael's situation. So 3285 days is a very conservative estimate of the days we have been living with this disease. More about that to come but first back to the movies.

As I said "Julie and Julia" wasn't our standard viewing fare but of late, Michael's Parkinson's symptoms have escalated rapidly, and not just the very debilitating physical symptoms.  His mental health has suddenly deteriorated to the point that he is very susceptible to visual and auditory influences;  films that are filled with action, violence and angst now cause him great consternation. In fact they can make him crazy with fear just like a young child watching a frightening film, unable to dissociate fact from fiction. So films like "Public Enemies" with my favourite Johnny Depp had to be scrapped halfway through when I saw Michael rocking back and forth in his seat, his face buried in his hands. As usual he said nothing of his anxiety but his body language spoke volumes. The movie went off immediately, as soon as I woke up long enough to take notice. The film was obviously not that thrilling for me.

So we are now at the point in this disease where my poor dear husband must be monitored like a small child whose mental and physical well-being are dependent on good care. It hasn't been a sudden arrival at this stage but a long arduous journey marked by dramatic crises along the way. The story of our lives together with this disease I hope to bring to your home. Be assured that it won't be a tragic tale but I hope one of grace, humour and love. We are all struggling with life's trials in one form or another. Ours just happens to be well mapped out with a vast store of literature available on the subject. I hope to bring it off the pages of the medical journals and into the realm of the ordinary.