What is lost in Parkinson's?

The presence of Parkinson’s in your life certainly feels like a loss, a devaluing and something to mourn. But does it cause a passing away of yourself? What exactly do you lose when you are diagnosed?

Past achievements remain intact and retain their value despite the presence of Parkinson’s in your life; you may long for the relative freedom from the disease you had in the past but this just shows the value that your past still has for you; it can be a source of inspiration and not disappointment.

The future does not exist in the present: it is unwritten and largely unknown, it is made of mostly inaccurate predictions; did you predict Parkinson’s? Case closed! The future is unpredictable because we don’t know everything about the world or its causal relationships; also people have free will and can change the world. The future is merely fragile expectations…

The present feels like Parkinson’s is taking bites out of me, ripping chunks of flesh from my body and gleefully devouring me piece by piece. However, this makes an assumption: there exists a perfect version of me unaffected by Parkinson’s that I can compare myself to. It is equally questionable to compare yourself to other people. Other people are not you. The only reasonable comparison I can make is with myself at this moment; this reveals, at this precise moment, I am being myself.

So what is lost? The past retains its value, the future is still unwritten and in the present you are just being you. The thing that is lost is your expectations of your present and future and this is truly devastating. But expectations can change…

dr jonny

I partially agree with what you are saying...but for me after having PD for 8 years I am still mourning what I have lost and what I now cannot do in the future.
I keep as busy as I can and reasonably happy but the sense of loss will never go away.Best wishes Kathryn
Hi Kathryn

I understand that mourning. You say "what I NOW cannot do in the future". I think that implies before diagnosis you expected a particular future. In hindsight it turns out that expectation was wrong because it didn't include the actuality of your Parkinson's. Therefore, relying on that expectation is like trying to hold onto something you never held in the first place. Your future wasn't fixed and then diagnosis changed that future; the future is unwritten, it is only with hindsight we can say this was how the future turned out.

I think mourning is not for our self (we are still here!), but for the (it turns out wrong) expectations we once held

Does this make sense?

dr jonny
i may be a little strange (!) but having always expected something awful to go wrong my difference between expectation and reality is positive - one up for extreme pessimism! So I have gained by pd not being as bad as my expectations of pd or other potential diseases.
Even that expectation turned out to be wrong! Don't expect, just be!
To repeat- Don't expect, just be. OK, "cogito, ergo sum" (I think, therefore I am). What happens if later in this illness, I lose my cogitative powers. > I think not, therefore I am not? I might as well expect the worst,then anything better is a bonus.
Hi ElleMac

I don't think "I think, therefore I am" has the same meaning as "Don't expect, just be". Rene Descartes was a rationalist and believed that thought alone created the world; we are only thought so thinking creates us. John Locke later showed that thought is influenced by experience of the world (he was an empiricist). It was Kant who found a middle way between the extremes of rationalism and empiricism; he believed we are influenced by our experience (experience forms the content of thought) but we also impose meaning onto this experience (we impose a structure to thought).

Whereas "I think therefore I am" is a purely rationalist position I was trying to take a Kantian position with "Don't expect, just be". By expecting the worst we impose an interpretation (a specific structure) on every symptom and see it as a doom laden prophecy of the hell to come. You are free to structure your thoughts in this way. But why would you make yourself feel fearful/rubbish/angry in the present when it is equally likely/unlikely that the future you expect will not come to pass (you say if I lose my cognitive abilities; you might and you might not); no one knows the future, there might be a cure next year or not, you don't know.

"Just be" means not leaping into a future you expect (other futures are available folks!). It is dealing with the present and being open and not imposing a negative interpretation on the future because it is unwritten and unknowable at this point in time.

dr jonny