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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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02-28-2010, 11:06 AM | #21 | ||
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From my personal experience, I continue to have a small amount of moisture, but I shower every day, I was also treated by local nurses who kept a watchful eye on me for few months. Now I am back to swimming to keep fit. Try to keep life at a manageable pace. Yes this is a new way of treating my parkinson's symptoms. But the medication isn't.Everyone of us are different, with our own responses to treatments. For my part a tube through the stomach is the last thing to worry about, pre Duodopa I was on the floor or on my bed, off, rigid etc This I refer to as the darkside of my PD. Hope this helps. |
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02-28-2010, 11:56 AM | #22 | ||
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I am soooo appreciative for the trial participants comments here. Those of you directly involved can help to dispel some of the endless speculation that comes from not having enough information , and hopefully learn from each other quickly.
welcome to all trial participants, paula
__________________
paula "Time is not neutral for those who have pd or for those who will get it." |
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03-01-2010, 10:22 PM | #23 | ||
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Thank you Diane for your information. This brings to mind IF Stolvay is even aware of the problem. They may be attributing this to post-operative infections, staff not being familiar with the device, monitoring it, etc. Think how hard it is for a PD patient to be admitted to the hospital for a non-PD related reason and JUST try to stay regular on your meds! They can't do it!
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03-12-2010, 10:14 PM | #24 | ||
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She had some discomfort to start with because of the tube but that has been resolved and she is no longer on pain medication. We are still looking for better ways to carry the pump as the shoulder strap is cumbersome and she would like it to be somewhat concealed. If anyone has a good idea please let me know. The pump is 8 inches long 4 inches wide and 1 inch thick. Have a great weekend. Cal |
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03-14-2010, 09:16 AM | #25 | |||
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Thanks for reporting back on this; it is encouraging to hear how well others are doing with this method. It is far superior to the oral delivery and is a long overdue alternative to brain surgery. Please keep us informed as to the pricing as it may apply in a long term use basis; I fear that Solvay may price it out of reach for many people. Cal, do you know if it is mandatory that the pump unit (box) be carried upright over the shoulder like a handbag? I love to sew, so sewing ideas quickly come to mind. If the shoulder is not necessary, you might be able to find someone to make a custom fanny pack where it is secured around the lower waist or upper hip...almost like a belt. The other idea is to have someone create a little undergarment with an inside/hidden pocket that secures the pump while concealing it. The other idea is, if you can't hide it, flaunt it. There are many beautiful fabrics that we like; she could have a few "designer" bags made to liven things up a bit. Lots of possibilities. I hope your wife continues to do well and feel better. Laura |
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03-14-2010, 09:23 AM | #26 | |||
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I have heard rumors that Solvay (now Abbott) was treating this as an end phase, nursing home bed, last resort treatment due to high maintenance costs. Yet on their web site they show active people and tout how it really gives patients a sense of freedom; a far cry from withholding treatment until end stage disease. Other rumor is that the pump will only be considered by doctors in patients who do not meet criteria for DBS...in other words, brain surgery would be the preferred course of pump inusion!? This has never mad any sense to me. Anyway, I would greatly appreciate if anyone could clarify any of this! Laura |
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03-15-2010, 01:11 PM | #27 | ||
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06-27-2010, 07:30 AM | #28 | ||
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Dan |
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07-25-2010, 08:45 PM | #29 | ||
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My husband continues to do well with his duodopa trial study. He has to go in every six weeks for a check-up and to receive his meds. This new drug is great. He has regained his strength and most of his weight - and is generally doing much better than before. When he is on, he has no signs of PD. An occasional off time occurs, but rarely. The duodopa has been great!! |
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"Thanks for this!" says: | SWer4Deaf (04-02-2011) |
08-04-2010, 02:32 PM | #30 | ||
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Hi, I'm new to this forum so please forgive me if I write things that are already known. I just wanted to say that in Sweden, where I live, there are about 200 persons with PD (out of about 20 000 with PD) treated with duodopa-pump. The cost is about $140 a day.
I know a man in his mid-40's who literally got his life back when he started treatment with the pump. He went from very disabled to working fulltime travelling alot in work. Sara |
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