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-   -   My neuros 3 key "take home" messages (https://www.neurotalk.org/parkinson-s-disease/1177-neuros-3-key-home-messages.html)

aftermathman 09-20-2006 04:47 AM

My neuros 3 key "take home" messages
 
from the recent European PD conference are:

i) Less drugs more often is more effective than more less often, e.g 5 doses of 2 mg rather than 3 of 3.333 mg (you get the picture, cr£p example). This holds for dop ags and L-Dopa.

ii) (Controversially), studies in UK show compliance with drug taking regimes is not good, apparently there is a significant percentage not taking their drugs on time.

iii) Duodopa, (liquid infusion of L-Dopa) is giving "astonishingly good" results in trials in Sweden.

Anyone interested then let me know and I will expand on these where I can.

Aftermathman.

ZucchiniFlower 09-20-2006 06:41 PM

That's great about the duodopa.

http://www.solvaypharmaceuticals.com...641-2-0,00.htm

EnglishCountryDancer 09-21-2006 01:15 PM

On time.
 
Having just heard the alarm go off I have shouted to my husband to take his
Requip.I am wondering what the experts mean by taking medication on time Do they mean to the minute or is a lapse of under 15 minutes alright in the early stages when only on an agonist? We have noticed that a lapse of more than 40 minutes means a more active tremor for at least 24/36 hours I am wondering if there are long term repercussions to not taking agonists to time

aftermathman 09-21-2006 04:22 PM

The example he gave was ...
 
a PWP taking L-dopa, missing a dose at midday and taking 2 doses an hour or two later.

The conversation was in the context of keeping constant levels of drugs and avoiding spikes. This is why the consensus at the conference was turning to smaller doses more frequently.

All seems like commonsense however it would be interesting to know if anyone has had good results spreading their drug taking to less dosage more frequently (as opposed to up'ing the dosage).

Aftermathman.

EnglishCountryDancer 09-21-2006 04:53 PM

Timing
 
Thanks for your reply and the informationI.which I think is more important than it appears on the surface.

rosebud 09-22-2006 12:35 PM

logic is a word the medical profession sidesteps
 
I figured out about 8 years ago that breaking my dosage of L-dopa down to smaller incriments gave me much better milage. I could not convince the "experts" at the movement disorder clinic, finally gave up on them (they don't/won't listen!!!) and went home. I have continued to do this with both my agonist and my L-dopa. Another powerful influence on my metabolism of my meds is cat-napping. Much like meditation, it drops your body into a slowed state briefly and things run much better. 15-20 minutes makes an unbelievable difference. I lay flat on the floor on my stomach, or flat on my back with my legs elevated. That's what works for me. I actually do nap (drift off for a short time). I did have to train myself a bit at first. But back to the smaller dosage: you have to watch your meals and digestion time...gotta run. Someones here to pick me up...more later.

indigogo 09-22-2006 01:46 PM

compliance
 
aftermathman -

Great post! Smaller doses taken more frequently just makes more sense

AND

Compliance is a huge problem in the PD community (might be elsewhere as well, but I have no experience).

I know that certain foods, green tea, exercise are good for me - but I am one sorry loser at following through.

We are having a PD conference in Seattle in November - compliance is one area that I am planning to bring up.

Cheers!

Mouse 09-22-2006 08:20 PM

"compliance"
 
I don't like the word "compliance." Too much like the word "obedience!" I do protest - I'm not out of compliance, I just forget! Forget to take my meds, forget if I took them already, etc.:confused:

About taking them more frequently - I'm still on agonist alone (6 years after diagnoses) - it was hard to remember to take the Requip every 3 hours, except that I"d stiffen up by hour 4. Switched to Mirapex, and I take it every 5 hours. . . Still, that last hour can get a little rocky. . .


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