Parkinson's Disease Clinical Trials For posting and discussion of clinical trials related to Parkinson's Disease, and for the Parkinson Pipeline Project. All are welcome.


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Old 04-02-2009, 05:52 PM #1
leonore leonore is offline
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Default 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
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Old 04-20-2009, 09:37 AM #2
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Default 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
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Old 10-01-2010, 04:28 AM #3
wn0anc wn0anc is offline
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Default I have had the pump for 14 months.

I have the pump.....**

Last edited by Koala77; 10-01-2010 at 06:27 AM. Reason: member privacy
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Old 10-06-2010, 05:20 AM #4
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Wink 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
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"Thanks for this!" says:
carolnoel (10-21-2010), paula_w (10-21-2010), SWer4Deaf (04-02-2011)
Old 10-21-2010, 02:43 PM #5
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Default

Quote:
Originally Posted by wn0anc View Post
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!
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paula_w (10-21-2010)
Old 01-19-2011, 01:25 PM #6
cmeender cmeender is offline
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Default Pump holder

Quote:
Originally Posted by wn0anc View Post
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
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Old 02-15-2011, 09:42 AM #7
elizabethGarratt elizabethGarratt is offline
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Wink 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
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Old 04-01-2011, 05:05 PM #8
1938Ross 1938Ross is offline
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Default Carrying duodopa pump

Yes please - I´d be very glad to have description and photos of how you carry the pump

Quote:
Originally Posted by wn0anc View Post
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
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Old 04-02-2011, 09:47 PM #9
SWer4Deaf SWer4Deaf is offline
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Default

Quote:
Originally Posted by wn0anc View Post
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
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Old 04-03-2011, 05:11 PM #10
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Default Longevity

Quote:
Originally Posted by SWer4Deaf View Post
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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