My doctor has suggested the pump. Hope it's not too much trouble to ask you for those pictures. With all the requests you've received for pictures, it seems PD hasn't dimished vanity. Or maybe it's just that this darn disease makes everything so difficult that it would be nice to know that there's an easier way to do something. Thanks.

The pump has really helped my husband. Greatly reduced stiffness & no dyskinesia.

He doesn't like any of the carrying cases they have given him. He is an active person. Would you send me your pics??

Thanks

I have young-onset parkinson's. I am 40 years old and I was very apprehensive about taking the risk of DBS at this point in time. I was lucky to get into the double-blind clinical trial of optimal oral therapy vs LCIG. My hunch is I was randomized to LCIG. for the first time in about a year I have not had the complete, random, unpredictable off-periods that limited my ability to do just about anything productive. We will have to see if my hunch is correct in the open label phase of the study.

I would be interested in learning about alternative pump-carrying techniques.

Also, are there any other yopa people who have tried duodopa?

I am in the 9th week of the trial and I have the pump in a zippered carrying pouch with a webbing belt around my waist, the tubes attached by double sided velcro to the belt. I have worn this inside my pants all day since I got the pump since I do not have to access the pump to change the flow of the gel. I understand that when I get into the open label test I will need to access the pump diuring the day. So, please send me suggestions and photos for wearing the pump more accessably.

Do you or anyone else in the trial know when these are scheduled to end?

My sister just got the pump, in a small clinical trial in Montreal. It is now a week after surgery, she takes Senemet orally every hour from 12-5 a.m. and it is really exhausting her. Did you have this difficulty? How do you manage nighttime? How do you sleep? As well, if you can share photos it would be much appreciated, as she is a sharp dresser and will want to know your way to carry the pump.
Thanks very much! HelenT

I am crying. So moved. My "off" periods are making life intolerable. How do I get a pump. Live in U.S. Willing to travel. If I can afford surgery.

I can feel your pain and desperation in your message. I will be praying for you.

How long have you had PD? This disease is one that will wear on you, each day can be different in how you respond to meds. I have followed the "pump" closely as have others on this site. I can tell you that you are in the right place for support. As far as the pump goes I have talked to reps at Abbott. They will not tell you anything beyond what is out in the press about it. In June of last year they released 12 week data of a 54 week phase 3 efficacy trial which showed great promise and positive results. This means the patients were on the actual drug, no placebo and they were evaluating the safety and efficiency of the medication. I estimate that from this the trial should be completed somewhere around late April/May 2012. To my knowledge this is the last phase before an application can be made to the FDA. This does NOT mean anything as far as whether or not application is made for marketing. Keep in mind this thing has been on the "fast track" since I think 2002! Hint: Follow the benjamin's, if it were for ED we would have had it yesterday!! I do not have the pump since I have had DBS. I am not eligible for the trials on it.

Here are some suggestions to get you through in dealing with PD.
- Lessen your stress if at all possible, this disease responds to stress. I can go from off to dyskinesia due to stress without any meds on board!
- Try to take your meds at the same time each day and at least 1/2 hour away from any food.
- make up a check sheet of 4 columns time, off, on, and on with dyskinesia.
start fresh one morning with usual starting med, lets say at 8 am so a check at 8 am off and circle 8am so you know you took the meds at 8. If you want, this is a good idea, write to the side what you took, I am only on one med so I dont write it in. Now you track how you are doing at 9am, 10am and so forth if you do this with the paper sideways and the time across the top, then off, on and on with dyskinesia at the left side you create an easy to follow graph of how you respond to meds and you can tell how long they last and if you are under or over medicated. This is a VERY telling story line. I would suspect that you are not getting enough levodopa. This can easily help you and your doctors see how you are responding. It tells them that you are serious about this in that you track how you are doing you're not just complaining that you feel off.
-get to a Center for Excellence, they specialize in PD and are located usually at university teaching hospitals. I don't know where you live but get to one. They deal with sometimes hundreds of PD patients on their clinic days, so who would you rather see? I have gone to different neurologists, movement disorder specialists, etc without much help. I went to the University of Florida, was seen by Dr. Okun and the first thing he said is that my DBS missed the target! Go to a Center for Excellence.
-so much more I can't begin to think of it all but read and carefully consider what you put stock in here and elsewhere, eliminate stressors, get the meds down and get to a CE. Let us know how you're doing, we unfortunately have something in common and this is the best forum I know of for support.


Jim

I had intended to start a petition but frankly do not sense I will get much support on it; not sure if it is PD apathy or what. I think they figure no one will pay attention unless blessed by the PDF or the NPF. My stand is that it is pathetic none of the myriad "advocacy" groups even question why a sound treatment already used for ten years in real, living patients is being withheld from us. The fact that Abbott is having to jump through all the hoops is equally as questionable.

Just how is it that a viable alternative to DBS that is less invasive and that will help many pwp who cannot have DBS sit on the Fast Track for over three years? Abbott/Solvay applied for new drug status in 2000!!! Funny you mention ED, there is indeed a massaging "hand" that passed FDA inspection as a medical device in under six months time. It is designed to help men who are paralyzed. That's fine, but when they essentially rubber stamp it as approved based on fact it is like "several other devices already in use". Well, last time I checked the pump infusion system was no different here than the design used in Europe. I get that we're dealing with major organs and a scalpel while the other is essentially a gadget but the underlying principle. Apparently, we have Sinemet, so our quality of life has not changed one iota.

At the very least I encourage everyone who is asking these questions here to contact their Congressional and House reps with our concerns...if enough of us do this it may have some impact. Don't be shy...send a video of our reality whether popping pills all day or not being able to move. Maybe that would get us somewhere.

Laura

My husband has PD that was first diagnosed in 1994 when he was 45. After years of taking every type of PD med available, he was chosen as a candidate for the Duodopa study. He is currently the only study participant in the state of Colorado. I will say that getting the meds in a gel form throughout the day does make his "on and off" times remain at a minimum. Until recent back surgery, my husband was a very active individual (hiking, team sports, etc.) and this helped him remain so. If there is a complaint, it is the design of the pump and the tubing used during this trial stage. Sometimes very cumbersome and the tubing often gets kinked or disconnected, which requires minor surgery to put back in place. As a caregiver, I sometimes find it a pain to maintain on occasion, but my husband still swears that it's 10X better than all those pills. We understand that the final product will be significantly streamlined from this study version.

Suzanne M., Colorado, Jul 28, 2011