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ALL IN THE MIND

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grumpy

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115 posts

Posted - 27 Jul 2009 16:42

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Hi all,
Having waited (not so)patiently for my neuro to get back to me after the trihexiphenidyl disaster I finally got a letter this morning. He is still unsure - is going on holiday and is writing to the neuro I saw in London. He is STILL maintaining my reaction to parkinson drugs is pschological but if this is the case why will the apo-morphine xhallenge be more successful? Any ideas?
Anyway we are going to do our own placebo/pill trial. My partner will halve 2 trihex pills and 2 vitamin pills of the same size and put them in a pot. I will close my eyes and take one at random. An hour later when I have either shaken or not we will count the half pills and see which I had. This can be repeated to get a fair idea I think. I suggested doing this when I was in hospital but they said it was unethical - I said I thought it would be ok if I knew and agreed but they would not do it.
If it is pschological surely something should bse done about that?
I will update with the results!
GRUMPY

English Country Dancer

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Posted - 27 Jul 2009 20:48

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A true sceientist.The only trouble is that P.D is noted for being subject to the placebo effect.I read about it in some learned journal yesterday,if I could only remember which one!!!

grumpy

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115 posts

Posted - 27 Jul 2009 23:00

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First trial was this evening.
No shaking
Investigation showed vitamin pill taken
English Country Dancer are you suggeseting reverse placebo effect?
GRUMPY

English Country Dancer

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Posted - 28 Jul 2009 07:56

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Do not know but suggest you arrange your scientic trial so that you do notknow which is which until the end....say two weeks. Have a week on one set of pills,then a week on another set of pill To be really scientific your partner should not know either(double blind trial)but that would be impossible to arrange.

grumpy

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Posted - 29 Jul 2009 10:09

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LAST NIGHT I UNKNOWINGLY TOOK A TRIHEX AND DID NOT SHAKE.

PERHAPS IT IS ALL IN MY MIND - EVEN MY SYMPTOMS

GRUMPY
PS ecd I am not trying to seee if they work just trying to see if I always get the shakes 40 mins after taking a pill. Clearly I don't

grumpy

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Posted - 29 Jul 2009 17:37

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TOOK ANOTHER PILL. SHOOK LIKE MAD. PILL WAS VITAMIN.

SO WHERE DO I GO FROM HERE.

I WILL CONTINUE DATA COLLECTION.

GRUMPY

Boswanga

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Posted - 30 Jul 2009 00:18

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I suggest that you see your Neurologist, and ask for a Dat Scan, or Spect Scan I think some call it. This will once and for all tell not only you, but your Doctor if you are suffering from PD. If you have already had this scan, then it is the Neurologist you need to see again, and tell him the problems you are suffering, and also of your little drugs trials you have been holding.
Good on you for trying the placebo experiment, although I think it would be frowned upon by some professionals.

GOOD LUCK FOR THE FUTURE
Bos biggrin

grumpy

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Posted - 30 Jul 2009 15:09

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Hi Bos,
Thanks for that. I have had a DAT scan and interestingly and annoyingly my neurologist has always thought there was something psycological going on. YOU Are right even so he won't approve - I know this as I suggested this before. He is on holiday. Conntncting him is a nightmare - he doesn't seem to ring and if I write it takes 2 - 3 weeks to get a reply. I think I might try and change.

EXPERIMENT STARTS AGAIN NEXT WEEK WITH 5 DAYS WHERE I DON'T KNOW EAHC TIME WHAT I HAVE TAKEN 9MY PARTNER WILL CHECK BUT NOT TELL ME0

GRUMPY