May 8, 2007

Making Peace With Mr. Parkinson

Here's the thing.... (he said, jumping back in as if he hadn't been gone for over a year)... the past year has been eventful, but instead of cataloguing these happenings, I'll just report on what is going on right now, perhaps referencing the past as ir relates.
I am on a few medications at present. ReQuip, Sinemet and (trying out for a month) Rasagiline. The way the pills affect me is very cyclical, I take the pills evry 5-6 hours (except for the Rasagiline, that's once daily) and I notice very definable patterns. Namely the pills don't really last 5-6 hours. When I take my meds in the morning, it takes between an hour and an hour and a half for them to kick in, starting off the day pretty miserably, feeling stiff and groggy. Then the meds kick in ( I can actually feel the muscles waking up and beginning to work, I've descibed it to someone as feeling almost as if the very temperature of your blood changes.. like a sudden flush of slightly cooler blood is entering the muscles that are tight and curled up.). So I am feeling good for perhaps an hour or two before the first twinges of The Stiffening returns. I notice my feet beginning to twist inward, if I get up to walk, my leg begins dragging again and there is general discomfort and restlessness in my limbs until pill-time again and then I wait the hour or so beyond that for it to release into my system.
Well, that's how it is with me anyway, Parkinson's affects each of us differently, so your mileage will , no doubt, vary.
With these cycles which come up 3-4 times a day, it gets easy for me to forget, in the middle of a bottom-out that it eventually gets better. I get gripe-y, sarcastic and angry (primarily at my poor pitiful self).
Things I have noticed here of late:
1) I complain about the dependence I have on medication to feel better. I wax dramatic about being an addict and being hooked on pills, needing more and more to feel good. I need to flip that thinking to where I am thankful that there are pills available that help, even if they only give limited relief. My psychological resistance and resentment toward these pills might have a negative type placebo efffect, you see? If people can think themselves into healing by believing a sugar-bullet is medication, then it stands to reason that I can talk myself out of healing benefits of medicine by harboring such negative feelings toward it.
Make sense?
2) After these 6 years with PD, I realize that in many. many ways, I still do not accept the reality of it in me. I fight it, sometimes physically wrestling with uncooperative body parts by grabbing a weak and shaking arm and holding it down till it ceases quivering. Better way: relaxation, which is the opposite of my gut reaction. I need to re-think my definition of control, it is not always physical, it may seem that it takes more time and doesn't always work, but I need to calm down, breathe, and allow the muscles to loosen on their own.
My body goes through enough without me restraining it and, in a roundabout way, punishing it for what cannot be helped.
3) Acceptance is a key. I know that. What I don't know is how to gain that acceptance in myself. Part of my blockage in that is the mixed up thinking that acceptance equals surrender and that surrender means lying down and letting PD run all over me. I have tried the surrender thing, folks, believe me, I have laid in bed for days in dark depression, shaking like a leaf, thinking the blackest thoughts possible for we humans to think about their own existence. Sooner or later, I realized that I need to get off my butt, get up, go shave and take a bath, eat something substantial and for God's sake, move. So in me the giving up thing is a thing where, been there, done that, bought the T-Shirt.
So in writing this, let me put the question out to the universe, what does true acceptance of illness like this mean and how is it acheived?
And let me add here that when I say I am putting a question "out to the universe", that you, in reading this, might just be the holder of teh answer I am looking for, so please.. any insight you might have out there.. do not hesitate to pull up a chair and let me learn from you.
I know there are folks out there who have mastered this or at least are farther along the path with it than I am. Teach me what you know, ok?
I entitled this entry as I did because I feel this is the next step for me, making peace with my illness.
I will candidly admit that I have avoided reading about PD very much. I have joined online groups but not participated. I really have not yet taken this very seriously, counting on these pill salone to pull me through. Well, medicine alone is never the answer, I know, I can just hear you out there saying that to yourself. But I think that perhaps.... maybe.. a sign of my acceptance of PD will be when I look at my small stack of PD books and say.. OK, what next.. what else acn I do for myself.
4) Another hurdle for me has been my inability to be gentle with myself. I push myself, my internal baggage telling me that because I am unable to work, I better justify my existence soem other way, I can at least keep a clean house, putter around the yard.. dammit, be busy. But the reality is that in the cycle period I wrote about earlier, my hands become almost unusable.
Think about it, if you lost your ability to use your hands, how much could you accomplish? The reality is, there is very little we do without out hands.
I will end this here, I could go on and on, but that's what they invented next days and further entried for, right?
Thanks for reading,
Lalo

Posted by Lalo on May 8, 2007 8:15 AM

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