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.
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.
Something in the region of 10% of Parkinson's cases have a clear genetic factor, for example a mutation in a gene like GBA or LRRK2. If you manged to detect this before you had children, in theory your partner could have IVF to screen for the genetic variant and thereby avoid passing it on. If you've already had children, then they could potentially be screened to find out if they carry the mutation. This was the case with Sergey Brin (co-founder of Google and one of the top 10 richest people in the world). His mother has Parkinson's and carries the LRRK2 variant; he got himself tested and also carries this though hasn't developed the condition yet; he has however, been a massive individual donor to Parkinson's research, to the tune of an astonishing $1.1 billion.
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.
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.
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.
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.
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.
Something in the region of 10% of Parkinson's cases have a clear genetic factor, for example a mutation in a gene like GBA or LRRK2. If you manged to detect this before you had children, in theory your partner could have IVF to screen for the genetic variant and thereby avoid passing it on. If you've already had children, then they could potentially be screened to find out if they carry the mutation. This was the case with Sergey Brin (co-founder of Google and one of the top 10 richest people in the world). His mother has Parkinson's and carries the LRRK2 variant; he got himself tested and also carries this though hasn't developed the condition yet; he has however, been a massive individual donor to Parkinson's research, to the tune of an astonishing $1.1 billion.
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.
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.
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.