Quote:
Originally Posted by Brain patch
.... If I may ask you, I would like to know if my dad is in pain. He says no when the doctor asks him but complains to me and my mom about backache and headache. I told him he needs to tell the doctor this and he says he forgot that he did have pain but said no because he did not have it when the doc asked. I worry about him suffering. Thank you kindly. You have been helpful to me.
Brain patch
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When I was diagnosed with Parkinson's, just about everyone told me (1) You die with it but you don't die from it; and, (2) it is not painful.
Neither was true. Parkinson's can kill you as dead as a doorknob, and the pain, when "Off" and having full-body tremors and spasms - well, i would describe it as "torture".
But it is a strange kind of pain; hard to describe; it is not like being stabbed with a knife; it can incapacitate me completely for hours, but it is also strangely survivable. It's like "Here we go again into the pain; I wonder if I should put on the Rolling Stones." It can be frightening too.
And it can be emotionally hard too. Depression and despair. Thus the added value of song and beauty and most anything you can attach your brain to until the pain decides to give you a break.
But don't worry too much about the pain. Parkinson's people can take a hell of a lot of pain. It's more important for your Dad to keep his spirits up and live as lovingly as possible under the circumstances, and he certainly is lucky to have someone like you caring about him.
The scene with the doctor - where your father says it doesn't hurt because at that moment it does not - that happens to me almost every time I see the doctor - I forget to ask what I wanted to ask; I tell him I am doing okay and in fact I am not; I make a list to read to him now; but I can still be taken by surprise by a question that I want to brush aside rather than have people, even the doctor, staring at my private pain. I'm doing real good, Doc. But as I get worse it becomes a lot more obvious when I am in pain.
But again, lots of people live with more pain than Parkies do. It's more the despair that we have to get rid of.
We all live long enough; it really is the quality of life that matters, to not stop marvelling at the beauty of the universe, and the general craziness of everything.
And everything is funny, some of the time. It's a disease that teaches a lot. Not what we would have chosen; but it changes the world you live in and you see great and horrible things, the best and the worst.
It's a strange adventure.