7 Comments
May 24, 2023·edited May 24, 2023

Would I want to know sooner?

I've noticed there can be a cultural aspect to this question. Americans, oozing with positivity, tend to take the view that the sooner you know, the sooner you can make lifestyle changes like diet and exercise to start fighting it. More cynical Brits say why would you want the cloud of an incurable disease casting a shadow over your life for several years longer?

For myself, I ran two marathons in the year before I was diagnosed, the latter with considerable difficulty, so I doubt lifestyle changes would have made any difference. I'm pleased I didn't find out until I needed to: I got to live my life for a few more years, rather than obsess over the condition that now pervades pretty much every aspect of my day.

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I’d like to have known earlier. Vigorous exercise, diet modification, bucket lists: all best done sooner rather than later.

But if we’re going to diagnose earlier, the NHS guidance to the newly-diagnosed will need to be much less drug-focused than at present.

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Yes I’d have liked to have known sooner. From what I know people with early onset Parkinson’s have a higher chance of passing it on to their children. Wouldn’t stop me from having children.

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I am not sure whether I would like to have known sooner. I had been referred to a neurologist "to put my mind at rest" so I wasn't at all worried by symptoms which were pretty mild back then. Would knowing sooner have helped? I really don't know.

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Sounds like an entirely new definition of the already vague diagnosis of "Parkinson's".

Would I want to know the results of this test? Well, what do they actually reveal? Muddy waters indeed.

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I am not sure I’d have wanted to know sooner. I am a member of a Facebook group for partners of people with Parkinson’s & quite a few can smell the musty smell Joy detected.

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