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.