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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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08-06-2010, 08:00 PM | #31 | ||
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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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08-09-2010, 10:39 AM | #32 | ||
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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:
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"Thanks for this!" says: | wn0anc (09-29-2010) |
08-10-2010, 03:45 PM | #33 | ||
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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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08-12-2010, 11:10 PM | #34 | ||
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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 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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08-12-2010, 11:14 PM | #35 | ||
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Quote:
Cal |
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08-20-2010, 09:47 PM | #36 | ||
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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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09-06-2010, 10:41 AM | #37 | ||
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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:
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09-21-2010, 07:38 PM | #38 | ||
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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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09-29-2010, 02:45 PM | #39 | ||
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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 |
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09-29-2010, 02:53 PM | #40 | ||
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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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