Parkinson's Disease Tulip


advertisement
Reply
 
Thread Tools Display Modes
Old 09-20-2006, 04:47 AM #1
aftermathman aftermathman is offline
Member
 
Join Date: Sep 2006
Location: Evesham, England
Posts: 598
15 yr Member
aftermathman aftermathman is offline
Member
 
Join Date: Sep 2006
Location: Evesham, England
Posts: 598
15 yr Member
Default 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.
aftermathman is offline   Reply With QuoteReply With Quote

advertisement
Old 09-20-2006, 06:41 PM #2
ZucchiniFlower's Avatar
ZucchiniFlower ZucchiniFlower is offline
Member
 
Join Date: Sep 2006
Posts: 782
15 yr Member
ZucchiniFlower ZucchiniFlower is offline
Member
ZucchiniFlower's Avatar
 
Join Date: Sep 2006
Posts: 782
15 yr Member
Default

That's great about the duodopa.

http://www.solvaypharmaceuticals.com...641-2-0,00.htm
ZucchiniFlower is offline   Reply With QuoteReply With Quote
Old 09-21-2006, 01:15 PM #3
EnglishCountryDancer EnglishCountryDancer is offline
Member
 
Join Date: Sep 2006
Location: Devon,England
Posts: 260
15 yr Member
EnglishCountryDancer EnglishCountryDancer is offline
Member
 
Join Date: Sep 2006
Location: Devon,England
Posts: 260
15 yr Member
Talking 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
EnglishCountryDancer is offline   Reply With QuoteReply With Quote
Old 09-21-2006, 04:22 PM #4
aftermathman aftermathman is offline
Member
 
Join Date: Sep 2006
Location: Evesham, England
Posts: 598
15 yr Member
aftermathman aftermathman is offline
Member
 
Join Date: Sep 2006
Location: Evesham, England
Posts: 598
15 yr Member
Default 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.
aftermathman is offline   Reply With QuoteReply With Quote
Old 09-21-2006, 04:53 PM #5
EnglishCountryDancer EnglishCountryDancer is offline
Member
 
Join Date: Sep 2006
Location: Devon,England
Posts: 260
15 yr Member
EnglishCountryDancer EnglishCountryDancer is offline
Member
 
Join Date: Sep 2006
Location: Devon,England
Posts: 260
15 yr Member
Default Timing

Thanks for your reply and the informationI.which I think is more important than it appears on the surface.
EnglishCountryDancer is offline   Reply With QuoteReply With Quote
Old 09-22-2006, 12:35 PM #6
rosebud's Avatar
rosebud rosebud is offline
Member
 
Join Date: Aug 2006
Location: Great Green Pacific Rainforest
Posts: 488
15 yr Member
rosebud rosebud is offline
Member
rosebud's Avatar
 
Join Date: Aug 2006
Location: Great Green Pacific Rainforest
Posts: 488
15 yr Member
Default 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.
rosebud is offline   Reply With QuoteReply With Quote
Old 09-22-2006, 01:46 PM #7
indigogo's Avatar
indigogo indigogo is offline
Senior Member
 
Join Date: Aug 2006
Location: "all the way over on the West Coast"
Posts: 1,032
15 yr Member
indigogo indigogo is offline
Senior Member
indigogo's Avatar
 
Join Date: Aug 2006
Location: "all the way over on the West Coast"
Posts: 1,032
15 yr Member
Default 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!
__________________
Carey

“Cautious, careful people, always casting about to preserve their reputation and social standing, never can bring about a reform. Those who are really in earnest must be willing to be anything or nothing in the world’s estimation, and publicly and privately, in season and out, avow their sympathy with despised and persecuted ideas and their advocates, and bear the consequences.” — Susan B. Anthony
indigogo is offline   Reply With QuoteReply With Quote
Old 09-22-2006, 08:20 PM #8
Mouse Mouse is offline
Junior Member
 
Join Date: Sep 2006
Location: California girl living in the Deep South
Posts: 11
15 yr Member
Mouse Mouse is offline
Junior Member
 
Join Date: Sep 2006
Location: California girl living in the Deep South
Posts: 11
15 yr Member
Default "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.

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. . .
Mouse is offline   Reply With QuoteReply With Quote
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off



All times are GMT -5. The time now is 09:53 AM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.