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NeuroTalk Support Groups (https://www.neurotalk.org/)
-   Parkinson's Disease Clinical Trials (https://www.neurotalk.org/parkinson-s-disease-clinical-trials/)
-   -   Duodopa pump: anyone know anyone who has gotten pump? (https://www.neurotalk.org/parkinson-s-disease-clinical-trials/83111-duodopa-pump-gotten-pump.html)

leonore 04-02-2009 05:52 PM
Duodopa pump: anyone know anyone who has gotten pump?
 
I may be eligible in trial in NY- who knows anyone who has gotten pump? Leonore

Stitcher 04-20-2009 09:37 AM
It is not yet recruiting in the USA
 
I understand this, and Dr. Hauser (Tampa location) said it to me in person two years ago...not verbatim, from memory only: There has been a lot of problems with infection at the abdominal wall site where the feed goes into the gut. I hope this has been resolved by now.

Study of Efficacy, Safety and Tolerability of Levodopa-Carbidopa Intestinal Gel in Levodopa-Responsive Parkinson's Subjects

Last Updated: January 22, 2009

http://www.clinicaltrials.gov/ct/show/NCT00357994

Purpose

The primary objective of this study will be to demonstrate the superiority of levodopa - carbidopa intestinal gel over treatment with optimized oral levodopa/carbidopa during 12 weeks.The study duration is 4 months.

Study Type: Interventional

Study Design: Treatment, Randomized, Double Blind (Subject, Caregiver, Investigator, Outcomes Assessor), Placebo Control, Parallel Assignment, Safety/Efficacy Study

Official Title: A Randomized, Double-Blind, Double-Dummy, Efficacy, Safety and Tolerability Study of Levodopa/Carbidopa Suspension for Upper-Intestinal Infusion in Levodopa-Responsive Parkinson's Subjects Receiving Optimized Treatments With Parkinson Medicinal Products Who Continue to Experience Persistent Motor Fluctuations

Locations

United States, Florida
Site 107 Not yet recruiting
Gainesville, Florida, United State

Site 106 Not yet recruiting
Tampa, Florida, United States
United States, Pennsylvania
Site 124 Not yet recruiting
Philadelphia, Pennsylvania, United States
Germany
Site 435 Recruiting
Marburg, Germany

Site 434 Not yet recruiting
Leipzig, Germany

Site 437 Not yet recruiting
Kiel, Germany

Site 438 Not yet recruiting
Hannover, Germany

Site 436 Recruiting
Bremerhaven, Germany

Site 433 Not yet recruiting
Dresden, Germany

Site 439 Not yet recruiting
Bochum, Germany

wn0anc 10-01-2010 04:28 AM
I have had the pump for 14 months.
 
I have the pump.....**

wn0anc 10-06-2010 05:20 AM
I have the Duodopa pump
 
I have the Duodopa pump and I am functioning for the most part nearly normal when it is on, and I cannot walk, shower, dress myself, eat, etc when it is off. Yes it helps THAT MUCH!!! Without it I would have to have DBS, that or constant care and pain meds for the dystonia. The tube entrance site on my abdomen is NOT a problem to maintain. I just wash the site everyday along with my regular shower, that's it. This pump is giving me a semi nearly normal life and without it I would most likely be in a wheel chair tucked away in a care facility somewhere..... I encourage everyone who no longer responds well to the pill form of Sinimet to consider it. It is not a miracle, as I still have down days mixed with better ones, but the on/off periods are much lower in intensity and much more gradual in duration. I could not go back to oral Sinimet even if I wanted to because of severe dystonia. I am hopeful that this pump may forestall ever needing DBS. I have been friends with this device for 14 months. I got it when it was open label, no placebo.

PM me with questions. I also have a much better way to carry the pump than the supplied fanny pack. Photos if you're interested.

Me

carolnoel 10-21-2010 02:43 PM
Quote:
Originally Posted by wn0anc (Post 701945)
I have the Duodopa pump and I am functioning for the most part nearly normal when it is on, and I cannot walk, shower, dress myself, eat, etc when it is off. Yes it helps THAT MUCH!!! Without it I would have to have DBS, that or constant care and pain meds for the dystonia. The tube entrance site on my abdomen is NOT a problem to maintain. I just wash the site everyday along with my regular shower, that's it. This pump is giving me a semi nearly normal life and without it I would most likely be in a wheel chair tucked away in a care facility somewhere..... I encourage everyone who no longer responds well to the pill form of Sinimet to consider it. It is not a miracle, as I still have down days mixed with better ones, but the on/off periods are much lower in intensity and much more gradual in duration. I could not go back to oral Sinimet even if I wanted to because of severe dystonia. I am hopeful that this pump may forestall ever needing DBS. I have been friends with this device for 14 months. I got it when it was open label, no placebo.

PM me with questions. I also have a much better way to carry the pump than the supplied fanny pack. Photos if you're interested.

Me
Hello!
I began using the pump three weeks ago and have not yet been able to reclaim my "street clothes". Would appreciate viewing the photos you referenced! If you have any other tips, that would be most welcome as well. Thank you for your willingness to share!

cmeender 01-19-2011 01:25 PM
Pump holder
 
Quote:
Originally Posted by wn0anc (Post 701945)
I have the Duodopa pump and I am functioning for the most part nearly normal when it is on, and I cannot walk, shower, dress myself, eat, etc when it is off. Yes it helps THAT MUCH!!! Without it I would have to have DBS, that or constant care and pain meds for the dystonia. The tube entrance site on my abdomen is NOT a problem to maintain. I just wash the site everyday along with my regular shower, that's it. This pump is giving me a semi nearly normal life and without it I would most likely be in a wheel chair tucked away in a care facility somewhere..... I encourage everyone who no longer responds well to the pill form of Sinimet to consider it. It is not a miracle, as I still have down days mixed with better ones, but the on/off periods are much lower in intensity and much more gradual in duration. I could not go back to oral Sinimet even if I wanted to because of severe dystonia. I am hopeful that this pump may forestall ever needing DBS. I have been friends with this device for 14 months. I got it when it was open label, no placebo.

PM me with questions. I also have a much better way to carry the pump than the supplied fanny pack. Photos if you're interested.

Me
My wife has been on this for a year and prefers the holster that is designed similar to a shoulder holster for a pistol. Would appreciate pictures if yours is different.
Thanks Cal Meendering

elizabethGarratt 02-15-2011 09:42 AM
ideas for carrying duodopa pump
 
hello I hope you are having a good day today,I live in the Uk and believe i may be offered a duodopa pump.As i am female I am wondering what ideas you have for disguising and carryying the pump,vanity prevales here!!not really but it would make me more positive if i knew how I could do this.Many thanks.Elizabeth:)

1938Ross 04-01-2011 05:05 PM
Carrying duodopa pump
 
Yes please - IŽd be very glad to have description and photos of how you carry the pump

Quote:
Originally Posted by wn0anc (Post 701945)
I have the Duodopa pump and I am functioning for the most part nearly normal when it is on, and I cannot walk, shower, dress myself, eat, etc when it is off. Yes it helps THAT MUCH!!! Without it I would have to have DBS, that or constant care and pain meds for the dystonia. The tube entrance site on my abdomen is NOT a problem to maintain. I just wash the site everyday along with my regular shower, that's it. This pump is giving me a semi nearly normal life and without it I would most likely be in a wheel chair tucked away in a care facility somewhere..... I encourage everyone who no longer responds well to the pill form of Sinimet to consider it. It is not a miracle, as I still have down days mixed with better ones, but the on/off periods are much lower in intensity and much more gradual in duration. I could not go back to oral Sinimet even if I wanted to because of severe dystonia. I am hopeful that this pump may forestall ever needing DBS. I have been friends with this device for 14 months. I got it when it was open label, no placebo.

PM me with questions. I also have a much better way to carry the pump than the supplied fanny pack. Photos if you're interested.

Me

SWer4Deaf 04-02-2011 09:47 PM
Quote:
Originally Posted by wn0anc (Post 701945)
I have the Duodopa pump and I am functioning for the most part nearly normal when it is on, and I cannot walk, shower, dress myself, eat, etc when it is off. Yes it helps THAT MUCH!!! Without it I would have to have DBS, that or constant care and pain meds for the dystonia. The tube entrance site on my abdomen is NOT a problem to maintain. I just wash the site everyday along with my regular shower, that's it. This pump is giving me a semi nearly normal life and without it I would most likely be in a wheel chair tucked away in a care facility somewhere..... I encourage everyone who no longer responds well to the pill form of Sinimet to consider it. It is not a miracle, as I still have down days mixed with better ones, but the on/off periods are much lower in intensity and much more gradual in duration. I could not go back to oral Sinimet even if I wanted to because of severe dystonia. I am hopeful that this pump may forestall ever needing DBS. I have been friends with this device for 14 months. I got it when it was open label, no placebo.

PM me with questions. I also have a much better way to carry the pump than the supplied fanny pack. Photos if you're interested.

Me

I'm usually pretty technically adept, but I cannot, for the life of me, figure out how to PM you . . . I'd love to see photos. My father is undergoing surgery to implant the pump at the end of the month and I would love to make some things for him to make it easier to carry. I'm so hopeful about this . . . it's been 15 years since I've gotten a good hug from him . . .

Alison

Conductor71 04-03-2011 05:11 PM
Longevity
 
Quote:
Originally Posted by SWer4Deaf (Post 758614)
I'm usually pretty technically adept, but I cannot, for the life of me, figure out how to PM you . . . I'd love to see photos. My father is undergoing surgery to implant the pump at the end of the month and I would love to make some things for him to make it easier to carry. I'm so hopeful about this . . . it's been 15 years since I've gotten a good hug from him . . .

Alison
Anyone who has the pump know of any stats on how long one can stay on this tretment? I have heard with DBS 5-10 years...is Duodopa about the same?

Thanks!

Laura


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