I don't care about my symptoms


#1
Before I was diagnosed I was still suffering from the symptoms of Parkinson’s, I just didn’t know it. When the diagnosis came, something changed because life suddenly became a lot harder to deal with. What changed?

I don’t think my symptoms got worse the instant I was told; the act of telling someone they have Parkinson’s doesn’t create or deepen the disease in them. The thing that changed was the awareness of the prognosis of Parkinson’s; it wasn’t the labelling of my symptoms that was important, it was knowledge of how they would get worse in the future. This made my symptoms too important to me in such a way that I obsessively monitored and interpreted each fluctuation in their severity as a prelude to my decline. Soon, my symptoms and the worst possible interpretation of them was all I could see. I cared too much about the prognosis until it became hyper-real and certain.

Prognosis means predicting the likely outcome of a disease. Can we ever know the future? The prognosis of Parkinson’s allowed me to build an elaborate and detailed future that was made out of nothing, merely thin prediction and likelihood. I became lost in this empty “future” and as a result missed my present circumstances as a whole. To escape the prison of a non-existent “future” you have to break it at the source; you have to declare, I don’t care about my symptoms. Try to recapture the feeling pre-diagnosis of the symptoms lived in day by day, naked without the empty finery of a prognosis.

A diagnosis of Parkinson’s is very difficult emotionally because it stretches you into a non-existent future. Due to its non-existence, you are powerless to change this “future”. Seeing the symptoms in the context of now, which means caring a little less about them, ensures you remain in the present.

dr jonny

http://dialoguewithdisability.blogspot.co.uk

#2
very true.

#3
Yes, I find it necessary to push myself to do things. It might be walking, going that bit further, Putting myself in situations which challenge me. It has helped my confidence. I do not want to be defined by having Parkinsons.

#4
Interesting and profound subject! Shortly after my DX, some folks I know tried to cheer me up with thinks like "the future doesn't exist (and the past doesn't matter any more); only the present matters". Some eastern philosophies/religion, like buddhism, (at least as I understand them) also emphasize "detachment" as the way to overcome problems (sort of "if you don't care, you don't suffer"). I personally don't go by any of those two logics - to me, there's more to life than that!

I do think that "carpe diem" is important too (one should make the best of the present), but I believe that looking forward to a possible future outcome adds an important dimension too (at least to me), and taking active steps to try to get there is even better (even if your contribution is tiny or you end up failing - but at least you're trying). This is where I rejoin you in thinking that focusing too much on the medical PD prognostic leads us nowhere. Personally, the way I handle it in my mind, is that I have no doubt that we will find a way to solve this PD thing and that we will end up in a better place than the current medical prognostic. I'm also determined to do all I can to help us get there. After all, doctors know about medicine, but we know more than them about our bodies, our lifestyle habits, our history, etc. And frankly, given how little they seem to know about PD, it doesn't take a rocket scientist to understand it either :-)

Call me optimistic; call me unrealistic. But that's just the way I think - and thinking that way makes me feel happy about the future and about trying my best to help us all get there - no matter how little my contribution will be or if it will even help at all. I will just keep believing and trying and feeling happy about the fact that I am trying! Actually I'm a big believer that all of us in this forum can achieve much together - lots of us experiment lots of different stuff and all of us have direct experience with PD - by sharing experiences and ideas and keeping an open mind, we can try to identify those things that work better for all of us and slowly progress in the right direction.

Warm regards to all,

lfs