True genius resides in the capacity for e... - Cure Parkinson's

Cure Parkinson's

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True genius resides in the capacity for evaluation of uncertain, hazardous, and conflicting information."- Winston Churchill

shasha profile image
9 Replies

True genius resides in the capacity for evaluation of uncertain, hazardous, and conflicting information."- Winston Churchill

a bit like us with conflicting advice from neuros etc!!

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shasha
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9 Replies
shasha profile image
shasha

how the hell are we supposed to know what to do ??

Hikoi profile image
Hikoi in reply toshasha

Are you saying we are not true genius's shasha :(

Court profile image
Court

How true. I feel like I am blinded with science! Trying to sort out which path to take is becoming more difficult. Maybe I am trying too hard and should follow Drew's example which is so inspiring. Perhaps the answer lies within each of us.

Hikoi profile image
Hikoi in reply toCourt

All so familiar. On many blogs people talk of confusing messages. I remember all these complaints about conflicting advice in another context. That was when getting together with others as a new parent wondering what was right for our baby. Then it was this nurse / friend / relative told me this way and this said the total opposite, which is right! Who am I to believe!

I think there are no absolutes, no right and wrong. The path evolves differently for each one of us and is constructed by us from the questions we ask, the information we receive combined with the expectations we have and the lifestyle we live.

Yes its true, treat the patient not the disease and central to that is our active participation as the person with Parkinsons.

Court profile image
Court in reply toHikoi

I remember being a new parent so well and how scary it was. In the end I had to find a path that was the right one for me. I think perhaps we have to do the same with Parkinsons.

JerriB profile image
JerriB

We don't know what to do, however, I believe we know our own bodies. So when something does not feel right with it, they (doctors) should really try to listen and observe, not only us, but what the research is uncovering. I actually had one doctor roll back in his chair and tell my husband and I "I guess I am not smart enough to figure this one out!"

shasha profile image
shasha

thanks to you all for the replies =

yeserday i put a call out to my neuro here in france - and i am still awaitng a call back - since phoning him, i had a nasty fall in the bathriom and banged my nose agaist the wall and then crashed down on my knee and right hip - so i look like a boxer today !! I was calling him to tell him i feel no better and wbat him to DO SOMETHING - he told me 2.3 years ago when he dx me that the meds were capable of making me feel 60/ 80% better - well I am 60/ 80% worse than i was ---

SO MR NEURO - what are you going ti do if anything ??

PatV profile image
PatV

yup we are all lab animals! Hope someone is listening :D

shasha profile image
shasha in reply toPatV

still no call backn - will have to try again today

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