Chris 49 UK. PD for 15 years, Duodopa since December 08.
 

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.

a sincere thanks
 

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

thank you..
 

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!

Duodopa study
 

My wife is currently in a duodopa study and is the first at the hospital doing the trial. She started on the 22'nd of Feb 2010 and is doing very well on the medication. The only issue she had is the tube pulled out once the first week and had to be put back in. Since then it has been going well. The great thing about it is no ups and downs. She is on all day long now which is great and rarely has any dyskinesia. The downside is the size of the pump and we do not know the cost at the end of the trial. Definitely would not like going back to taking pills every three hours or so and then getting dyskinesia as well.
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

Possibilities
 

Cal,

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

Cost of Duodopa
 

Chris and others who are in clinical trilas or treated with Duodopa, can you share with us info on costs for this treatment and how readily it is prescribed?
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

Sounds like the Pump is the size of a cellphone
 

I have the pump
 

I have been in the study since March 2009. I live in Ohio and just wanted to jump in and say that this system really works! I noticed that there seems to be some concern about infection at the port site. I have had little problem with this. A port is a port. Simply keeping the site clean and not snagging your port on something and jerking it are the two most important items. I am now in the second year of treatment. I was not in a blind study. I got the drug from the first. I only have to see my neurologist every six months and life is great.

Dan

Update:

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!!

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