Go Ask Alice

Trippy Self Portrait by BHOTCH, DeviantArt

One pill makes you larger and one pill makes you small

For most of my adult years, I avoided pharmaceutics whenever I could. I tried herbal remedies and concoctions, ginger teas for digestion, chamomile for sleep, vitamin supplements at times when coughs or colds had taken hold. I experimented with diet, and generally tried to follow what I would suggest was a less toxic route. I did my share of a different sort of drug in my university years and thereafter but that is yesterday's news. When I was diagnosed with PD in 2000, things changed.

A cold or sore throat - that i could deal with. A chronic neurological illness that would, according to my first Neurologist - see me in a wheelchair in 5 years, I could not. She recommended immediately starting levodopa. Yes Doctor. Sinemet. Yes Doctor. and domperidone. Yes Doctor. A zombie before Zombies became big (not these Zombies but the ugly ones).

Knowing little of PD at the time, I was taken aback at the speed this 'pusher' had me up and medicated (with a script to ramp up the amount and frequency in the weeks ahead).

In fairness to all, I didn't put up much of a fight. Chronic Disease? Specialists? Movement Disorder specialists? How could THEY all be wrong and me right. Not likely. I would go with the flow and follow their advise. And for the most part, this has been good advice by considerate and compassionate health care workers.

And the ones that mother gives you, don't do anything at all

But something is troubling me. I don't want to over-simplify this but in this, my 15th year of PD, I have went from a few pills to control tremors and dystonia to a lot of pills for the same. This brought with it some adverse effects which we of course added other pills to counteract these effects.  When some of these didn't work as well, we tried different ones which worked better but came with another side effect that, fortunately, could be aided by another pill that had few side effects in 92% of the population. I was in the 8%. It was on to something else. 

At the same time I developed some gastro-intestinal problems and this introduced 3 new pills. Moved to an enteral pump for delivery of my PD meds - resulting in one less pill (yeah!) but then went through a rough period of depression - more pills. Low blood count - more pills. See a worrisome trend developing here?

Go ask Alice, I think she'll know

Some days I can't help but feel I want to stop this train and get off. I'm not naive enough to think that's going to work. Yet, I worry about the longer term effects of all this medication. For the moment, I'm planning a review of all the meds I am taking with my physicians with an eye to reducing or eliminating some. I'm also reticent about introducing others where and whenever I can in the days ahead. To those readers who are in the early stages of Parkinson's, or any chronic illness for that matter, you'll have to make your own call. My tale may be a cautionary one. Remember what the dormouse said - feed your head, feed you head!

a good time to die

Dead Tired - Gopixpic

When first diagnosed with PD some 14 years ago, I remember being plagued for weeks by thoughts of my last days. I couldn't deal with all of the horrors associated with end stage Parkinson's. I still can't. Yet, if there is any lesson I have learned, it's to not precipitate about a future you cannot control. Further, as Michael J Fox has pointed out, there is little use in worrying about that now - to do so would mean you actually live through such horrors twice - once in the present and again when you actually arrive at that point. 

Of late, though, as PD has taken more of a toll, and as I have seen friends and family dealing with issues of mortality, I find it hard not to drift back to thoughts of death and dying. Not in an obsessive way nor centered on my state of health in those "dying days". More focused on consideration of how I am to live the rest of my years. What is it that makes my life valuable? What is it that I can offer that makes my life meaningful? How long will I want to live in advanced years with a declining body and mind?

Recently, I heard an interesting interview on CBC radio's The Sunday edition with Dr. Ezekiel Emanuel, an oncologist at the University of Pennsylvania, who says that he wants to die at age 75. He is currently 57 years old, apparently quite active, has no terminal illness and no plans to commit suicide. Yet he says that he would be doing society and loved ones a favour by dying at 75. “A good life is not just about stacking up the years and living as long as possible. People need to focus on quality of life,” he says. “Setting an actual date for a good time to die helps you focus on what is important in your life.”

He says when he reaches 75 he will refuse all tests and treatments, including the blood pressure medication he takes now. He's not suggesting people kill themselves at 75 but, rather, let nature take its course. As the CBC interview points out, it's a controversial stance, but one that resonates in an age when medical science can prolong life, but often at the cost of quality of life.

If you want to hear the full interview, you can listen here.

So, what's a good time to die?