Your ranting, ours too! Especially #3! Exercise all of his life and eating healthy, my husband still got PD. What he couldn't avoid was STRESS and Agent Orange.
Nailed it, is right! Somehow this made me feel better this morning. I needed someone to articulate the frustrations of this nonsensical disease. And I’m sure we all could add just one more.
Like, 11. Apparently, it is a disease people do not die of. As all my very supportive friends tell me regularly. One wonderful friend has told me on numerous occasions, “My father died at 64 of heart failure”. I feel like saying “he had Parkinson’s, all ailments after that diagnosis stem from his Parkinson’s”.
The other thing this same friend tells me is that I am doing way better than her dad because her dad gave up as soon as he got the diagnosis. I feel that is what she saw from the outside. But people that don’t have the disease, can’t feel what we feel. I look from the outside like a very healthy person. People are shocked to hear I have Parkinson’s. And I know people are being nice when they say, “they can’t tell.” But I know that I have it. And when I die prematurely, I want it written that she died of Parkinson’s.
I have been a person with a good diet, good activity level, no weight problems, never smoked, never took unprescribed drugs and drank in moderation. What the hell!
And just as a side note, I don’t want to die young but I don’t want to die with my symptoms out of control either. I am essentially living like I was dying. There is a song somewhere in there, I believe.
I hear what you’re saying but the longer I have PD and the older I get, I’m getting sort of resigned to death. I don’t fancy getting to 80 something in poor health and living in a world where most of my old friends have died or don’t recognise me any more 😂. In addition I’m confused by the world and my place in it. Luckily I have a strong belief in God and an afterlife (but non religious). Lets see what happens. But it does seem to me that - for most at least - that real joy and happiness are experienced during our youth? Oh how I wish I was 21 again, even with the acne!
I have learned to take joy in smaller or more simple things. The song of a bird outside my window, a beautiful sunset, a tasty meal, or even 3 doses of my medicine working in a row..
If I may add one of my own: Every time we find a medication that finally has us functioning reasonably well, they go and change or discontinue the formula!
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