[exchemist]

This is often said, but I don't think it should paint too rosy a picture, it's still a massively debilitating disease. My father (diagnosed just after 50) lived nearly 30 years with it (died 78 - I guess that's normal life expectancy, but the last decade of his life he had a pretty bad quality of life). He is unusual in that his death cert just says Parkinson's Disease as cause of death, and I wondered at the time whether the consultant was making a point that PD can be the thing that kills you after all. He really didn't have much else wrong with him except that, once the drugs stopped working he couldn't swallow, talk or walk - he lost a ton of weight and the dementia side of it (which is far less discussed) meant any kind of communication was basically impossible. Not sure what my point is - but "you don't die of it" is a bit of an oversimplification.

[throwaway2037]

That is incredible. To live 27-28 years after diagnosis is a modern medical miracle. That said, I am highly sympathetic to the points that you made. Essentially, he became a vegetable: <<any kind of communication was basically impossible>>

Did you ever discuss end-of-life options with him before the disease progressed so far? I have a close relative with PD. I am terrified of the last years, but no idea how to raise the issue of end-of-life options. My family's culture is pretty much "try to live forever" instead of "try to live well". Are there any Swiss/Belgians/Dutchies here with experience on planned end-of-life options? Those three countries are exceptionally liberal on that matter.