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 08-06-2010, 08:00 PM #31
Dianne G Dianne G is offline
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Dianne G Dianne G is offline
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My husband has the pump. We modified a heavy-weight t-shirt by putting a pocket on the front just large enough for the pump to fit, with velcro at the top to close it, cut a hole through the back of the t-shirt for the tube to fit in. We just pull the tube through the hole and out of the pocket, then attach the pump, and drop the pump into the pocket, and seal the velcro (this prevents the pump from falling out when he bends over). Then he wears his normal shirt over the t-shirt. Maybe she can use some variation of this idea to suit her specific needs.
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Old 08-09-2010, 10:39 AM #32
lute lute is offline
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Default Duodopa trial in Milwaukee

Hello,
We are new to Neurotalk. Dan is scheduled to start the open label Duodopa trial at Froedtert in Milwaukee next week. We wanted to touch base with you, share your experiences before and after the surgery. We are from Minnesota but will be traveling to Wisconsin (often for the first several months) or staying in town if need be. We would love to meet you both while we are there.
Dan & Arlene


[QUOTE=cmeender;623604]
Quote:
Originally Posted by Dianne G View Post

Thanks for the information: My wife is to start a clinical trial with this on the 22'nd of Feb 2010, next week. I will ask if the tubing has been changed or if the problems still exist. I would hope that the problem has been corrected. She currently has a lot of off time and we are looking forward to an improvement without the DBS. Will let you know next week how it goes.
Thanks again
Cmeender
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wn0anc (09-29-2010)
Old 08-10-2010, 03:45 PM #33
cmeender cmeender is offline
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[QUOTE=lute;683318]Hello,
We are new to Neurotalk. Dan is scheduled to start the open label Duodopa trial at Froedtert in Milwaukee next week. We wanted to touch base with you, share your experiences before and after the surgery. We are from Minnesota but will be traveling to Wisconsin (often for the first several months) or staying in town if need be. We would love to meet you both while we are there.
Dan & Arlene


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Old 08-12-2010, 11:10 PM #34
cmeender cmeender is offline
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Default Duo-dopa study

[QUOTE=lute;683318]Hello,
We are new to Neurotalk. Dan is scheduled to start the open label Duodopa trial at Froedtert in Milwaukee next week. We wanted to touch base with you, share your experiences before and after the surgery. We are from Minnesota but will be traveling to Wisconsin (often for the first several months) or staying in town if need be. We would love to meet you both while we are there.
Dan & Arlene

Hi Dan and Arlene: I am not sure how to give you information to get in touch with us. We live in Racine which is just south of Milwaukee. We are about 35 minutes from Froedert depending on traffic. My sign in is part of my first name and part of my last name. Add ing to the end of the sign in and separate the first letter. Good luck next week; I can tell you the nurses on the fifth floor at Froedert are great, very helpful and will take very good care of you. Hi to Jennifer, Julie and Ashley.
Cal & Nancy

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Old 08-12-2010, 11:14 PM #35
cmeender cmeender is offline
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Quote:
Originally Posted by Dianne G View Post
My husband has the pump. We modified a heavy-weight t-shirt by putting a pocket on the front just large enough for the pump to fit, with velcro at the top to close it, cut a hole through the back of the t-shirt for the tube to fit in. We just pull the tube through the hole and out of the pocket, then attach the pump, and drop the pump into the pocket, and seal the velcro (this prevents the pump from falling out when he bends over). Then he wears his normal shirt over the t-shirt. Maybe she can use some variation of this idea to suit her specific needs.
Hi Diane: The T shirt idea sounds great; I will have to ask our daughter to try to make one. Currently Nancy has a shoulder holster similar to a gun holster but designed specifically for the pump and it works better than the one they originally gave us. Our daughter also made a fanny pack that is very light but my wife prefers the holster.
Cal
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Old 08-20-2010, 09:47 PM #36
cmeender cmeender is offline
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Default contact information

Dan: My wife is currently on the study at Froedert; If you wish to contact us try calling our daughter at her business Racine Community Acupuncture.
Just Google it and it will come up first page.
Our best wishes this week.
Cal Meendering

[QUOTE=lute;683318]Hello,
We are new to Neurotalk. Dan is scheduled to start the open label Duodopa trial at Froedtert in Milwaukee next week. We wanted to touch base with you, share your experiences before and after the surgery. We are from Minnesota but will be traveling to Wisconsin (often for the first several months) or staying in town if need be. We would love to meet you both while we are there.
Dan & Arlene


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Old 09-06-2010, 10:41 AM #37
lute lute is offline
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Default Duodopa trial in Milwaukee

Hi Cal & Nancy,
Well, we did it!! Dan & I travelled to Milwaukee for the duodopa clinical trial - open label. We are back home in Minneapolis, trying to get used to the dosing regimen and to finding a comfortable way for Dan to carry around the pump. We'd love to share your experiences with both. Our next appt at Froedtert is Sept. 20th. We will try to reach you through your daughter's business.

Dan & Arlene Lutenegger

[QUOTE=cmeender;687209]Dan: My wife is currently on the study at Froedert; If you wish to contact us try calling our daughter at her business Racine Community Acupuncture.
Just Google it and it will come up first page.
Our best wishes this week.
Cal Meendering

Quote:
Originally Posted by lute View Post
Hello,
We are new to Neurotalk. Dan is scheduled to start the open label Duodopa trial at Froedtert in Milwaukee next week. We wanted to touch base with you, share your experiences before and after the surgery. We are from Minnesota but will be traveling to Wisconsin (often for the first several months) or staying in town if need be. We would love to meet you both while we are there.
Dan & Arlene
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Old 09-21-2010, 07:38 PM #38
Jim091866 Jim091866 is offline
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Default Has anyone in the duodopa trial had DBS?

I was wondering about this. I have been trying to get into this clinical trial but have not heard back from the sites that I have e-mailed to express my interest. I've had DBS but it was less than optimal results. I was told that my leads were marginal. Still having to take about 10-12 levodopa a day. Thanks
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Old 09-29-2010, 02:45 PM #39
wn0anc wn0anc is offline
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Default Carry the pump easily...

I have had the pump for 14 months. I have a great way to carry the pump. call me **

[QUOTE=lute;692300]Hi Cal & Nancy,
Well, we did it!! Dan & I travelled to Milwaukee for the duodopa clinical trial - open label. We are back home in Minneapolis, trying to get used to the dosing regimen and to finding a comfortable way for Dan to carry around the pump. We'd love to share your experiences with both. Our next appt at Froedtert is Sept. 20th. We will try to reach you through your daughter's business.

Dan & Arlene Lutenegger

Quote:
Originally Posted by cmeender View Post
Dan: My wife is currently on the study at Froedert; If you wish to contact us try calling our daughter at her business Racine Community Acupuncture.
Just Google it and it will come up first page.
Our best wishes this week.
Cal Meendering
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Old 09-29-2010, 02:53 PM #40
wn0anc wn0anc is offline
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Default I have had the pump for 14 months.

The duodopa study has been a God send for me. I've had it for 14 months and without it I can't walk or take care of myself. With it, most people don't know I have PD. The reported problems with the PEG site that I read here are false. It is easy to care for and I've had no problems. Reply with questions and I'll try to answer them. Also I found a great way to carry the pump....

RD
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