Hi everyone. I'm new to the board, having started looking for more information about the clinical trial my father's starting at the end of the month for Duodopa via pump . . . Thank you all for sharing your success stories and frustrations. I would love to see pictures of some of the custom "rigs" people have devised to carry the pump more comfortably. I hope that everyone is well.

Thanks again,
Alison

Perhaps one of you in the trials can get someone in your family to do a you tube type video that we could post on the web for others to check out. Off and then on with the pump, not too complex just shows the effects of the medication.

My wife was diagnosed 14 years ago with PD and just turned 60. For the past three months we have been participating in the 002 double blind Duodopa clinical trial with the University of Cincinnati. Just over a week ago my wife began the 003 open label phase that uses the active gel.

After reading the posts in this thread I feel like I should add my $0.02.

My wife was patient 8 of 10 at this site. Patients 9 and 10 have been fitted with tubes and are both just entering the 002 blind phase. As I understand it UC will admit no more patients, their quota is filled. But as I also understand it, other sites may still have openings to fulfill the 64 patient number nationwide.

My wife has experienced some mild discomfort at the stoma site but nothing major. As someone else mentioned, the tube that is used is a European design that does not work well and it prone to problems (the tube had to be reinserted once due to a knot during the 12 week trial, a common problem as it turns out) but the tube design must be used on all 002 patients while the trial is ongoing. The US version of the tube may be used at a later date but that has not been approved at this time.

We had always been told that my wife was a prime candidate for DBS but that option always seemed extreme and risky to us. Luckily for us, the DBS surgeon that cared for my wife happened to mention the Duodopa trial as we had told him we would NEVER resort to DBS.

All I can say is this, I have my wife back after only 10 days on the active gel. She is happy and hopeful again, smiles, her dyskinesia is almost non-existent and will be completely gone once we find the correct dosage and rate, she walks perfectly, and her cognitive abilities are returning too. It is not perfect but it is very close, a massive improvement over oral Sinemet.

This treatment works, simple as that. We are both very thankful for the gift we have been given and indebted to everyone at UC that worked so tirelessly to make this a success.

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.

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 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!

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

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

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

If the pump is like a (large)cellphone, consider designing a belt-clip for it.