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Tuesday, December 22, 2009

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 I realize now that many of the books I consulted were outdated.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.

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