For those who care for someone with Parkinson's disease
| [Home] [Forum] [Help] [Search] [Register] [Login] [Donate] |
| You are not logged in |
|
| ||
|
My DH is trying to make the decision about getting the Duopa Pump. I know that the Duopa company has a mentor program, and I have talked to one couple, but would like all the information we can get. My DH has been approved and actually started the process to have the surgery and then decided against it. His appointment with the MDS is coming up soon, so we will be discussing it again. 1 - My DH has a catheter and didn't know if he wanted another bag hanging on him. 2 - The MDS couldn't give any guarantees about whether the Pump would give him any better solution to the fluctuations in his "ons" and "off"s during the day, than the Rytary he is currently on. 3 - The warnings against the Duopa Pump, on their website are very scary, as are a lot of warnings on medication, but this really did scare my DH. 1 - My concerns are involving the maintenance of the site and the Pump. They taught me how to do that & I'm sure it gets easier as time goes on. 2 - I am also concerned about switching back to the Rytary if/when I get sick. 3 - It took 3 months to get the dosage close to being right when my DH switched from the Sinemet to the Rytary. And the Duopa website stated that the PWP who went to the Pump did have about a 3 month period of titration, before the dosage was right too. 4 - Also, the unknown about the new symptoms that will surface. The first time that my DH considered the Pump he inferred that I was making his decision for him, because I set up his appointments. So I want him to be sure and remember that he made the decision. Also, I would like to know how cognitive decline affects the Pump. Any comments would be appreciated. |
| ||
|
Hi Elaine, I've been meaning to write a reply to you for several days but didn't seem to get a minute free to do it. I can only give you an account of the Duodopa pump from our own experience. Dh has it for several years now. He has one that he wears during waking hours and another (exactly the same) that he wears at night. The nighttime one is set at a lesser continuous dose. Initially, he got the daytime pump as he could not tolerate oral medication. It was ramped up to the max and just not providing any relief. He was either entirely OFF or had incredible dyskinesia. His weight was plummeting. He had already been taken off the agonists because he had become delusional and hypersexual. As you know the medicaton is administered via a Peg tube directly into the abdomen. This is a fairly straightforward procedure. He was tested for a few days via a nasal tube to get the correct dosage and despite having a psychotic episode during this period they still (thankfully) went ahead with the operation. The aim is to get the medication at or just below the therapeutic dose. It can easily be adjusted up or down accordingly (I can do it at a moments notice myself now) so I question that it takes 3 months. Like oral medication it has a very short half life so it's results; whether too much, or too little, can be dealt with really quickly. In Dh's case the results were immediate and he enjoyed a much better quality of life straight away. That being said, in the last few years we have had to add oral medication (entacapone) to supplement the pump, not because the pump doesn't work as well, but because of the relentless progression of this awful disease. Last year DH was without the pump for a week as the tubes got tangled inside his body and we had to revert to oral medication. It was horrendous for him and for me. So whilst, he sometimes complains about having to wear the pump and it is terribly cumbersome, we are so grateful that it still works relatively well for him. With your husband already having a catheter there is more for you to consider. The peg wound requires regular cleaning and the tubes need to be flushed with water every day. In our first year Dh developed infections 3 times at the site of the peg opening, which were painful and annoying, but thankfully that has happened for years now. I haven't seen the warnings on the Duodopa website. if you can post a link I'd be happy to address them for you. Your MDS is right in saying that there is no guarantee of improvement over what you have already with the Rytary. Only you, know whether it's worth trying. Of course, if you try it and it doesn't work, it can be removed and the peg wound would close up again. But it still a major undertaking. As I said, it helps only the motor aspect. DH's cognition is not improved by the pump (not that I'm aware of anyway) and if like him, your husband is cognitively challenged, you will be solely responsible for the administration of the pump. In our case, it means I'm with DH for 24 hours a day, no nights apart unless I train someone he trusts to use it as well as I and usually no major time apart during the day as he may need a booster dose and can't manage to do it himself. By the way, the lesser dose at nighttime means that if he wakes he is still OFF and completely immobile. I think that this is the main reason that it is not offered to some people who may not be able to administer it themselves or have someone to do it. Certainly my Dh would not be capable. Sorry this is so long winded. If you have any other queries, just let me know. |
| ||
|
Daisy123, I want to thank you so much for being, like you said "long winded". I appreciate all the information you or anyone can provide me. Of course it does make me think of more questions. You said that your DH has had the Pump for several years, so I am wondering if your DH was one of the very 1st to get the Duopa Pump or if he was in a clinical trial, because they don't do the nasal tube test any longer. When the MDS started to talk to us about the Duopa Pump, he did state that they would do it that way. Now they feel that it's not necessary, because like you said, it can be removed if it doesn't work out. The name has been changed to "Duopa" instead of "Duodopa" also. The website has the warnings/side effects of the Duopa Pump. https://www.duopa.com/ My DH has been taken off of the agonist Mirapex, but he still has delusional/hypersexual behavior. It would be more tolerable if it were only directed toward me, but it has gone further than that, so we will be addressing this with the Psychiatrist tomorrow and the MDS next week. The Psychiatrist has known about this in the past, so I don't know if she can do anything more. She keeps telling me that I really need to put him in a nursing home (He has been turned down by 6 assisted living homes, but they want me to get a back up plan). I suspect that the only thing the MDS can do is to lower my DH Rytary dosage. That's a fine line because if my DH can't transfer, then I won't be able to keep him at home. Even with a patient/Hoyer lift it would be a challenge. So maybe the Duopa Pump would provide a more accurate dosage. Being my DH has a lot of Urinary Tract Infections due to the catheter, I worry that another area in the body to get infection wouldn't be good. So much to think about. They don't seem to think that this would be a problem, but they aren't the ones having to deal with it. I don't know the reason for my DH's cognitive decline. It fluctuates so much in a days time. It could be LBD/Parkinson's Dementia or it could be the Urinary Tract Infections that my DH has so often. I would be the one maintaining the Pump. We can't go anywhere overnight because he has to sleep in a hospital bed, and we are together 24/7 also. So if we decided to have my DH go to an Adult Day Care for a few hours (we haven't done this yet), I would need to train them in giving that booster dose. Does the Dopamine Dysregulation Sydrome cause a problem with administering that booster dose? It is interesting that your DH wears it at night (at a lower dose). We were told that I would still need to get up every night and give my DH his Rytary at 1:00 am. They said that he couldn't wear it at night. So this is something I will be asking about when we go to the MDS next week. You said that when your DH had to switch back to the oral medication for a week it was horrendous for both of you. This scares me a little bit too. But then the unknown things about this darned disease scares me also. Thanks again for sharing your experience. |
| ||
|
Hi Elaine, Crikey!... I had a look at the Duopa website. I'm not surprised that you are frightened by the list of side effects. Thankfully, apart from the site infections we have not really noticed that there are any more complications than taking oral levadopa. We are not US based and the pump has been available (not widely) since 2005 in Europe. DH got it in 2010. Now that it has finally been approved by the FDA we are hopeful that the design of the pump will be modernised. Initially, he wore it during the waking hours, but after 6 months or so it was recommended for night time use as well. Some people never need it for that, though. Your dilemma really is what is causing your DH's behavioural problems and that is very difficult to determine. Is it PDD/LBD, urinary tract infections or just too much drugs? Or indeed, a combination of some or all three? You mentioned that he has been diagnosed with Dementia together with Dopamine Dysregulation syndrome, but I would have thought that a diagnosis of DDS would leave a dementia diagnosis questionable? Do you mind me asking how long he has PD? In my opinion the pump will only help if he is still taking too much levadopa. In our case, Dh is also delusional and suffers from daily hallucinations, which vary between manageable and unmanageable. His levadopa is at just enough to keep him physically functioning. Some times it works well, sometimes it doesn't work at all, that's the unpredictability of it all. We try to address his behavioural problems with other meds, though without much success lately because, like you we cannot risk increasing the Dopamine further. I also only give him a booster dose in response to his needs rather than at set times during the day. It is good that you would be able to administer the pump if you go ahead with it. It really is quite easy. You do have rather a lot to mull over. I hope that you can find peace with whatever you decide. |
| ||
|
Hi Daisy123, My DH was diagnosed (dx) with Parkinson's in 2010 by a general neurologist. His Psychiatrist dx LBD. His MDS dx Parkinson's, DDS and maybe PDD. So there is a difference in the Drs. But there is very little coordination of treatment plans between the Drs. When he was evaluated for DBS in a different hospital/clinic they put in their report that he had atypical off symptomology when they took him off of the medication. We are seeing his Psychiatrist today, so I am asking her to coordinate with the MDS to help us. Usually she says that I really have to put him in a nursing home. I keep thinking that there has to be another way, but being I am almost to the end of my rope, I will have to start listening to her.. We will see the MDS next week. Thank you again for your input. I appreciate everything you have to offer. |
| ||
|
I agree, it seems no matter where you are there is very little joined up thinking between different practitioners. That's why it's so important that we advocate for our loved ones wherever they attend. |
| ||
|
Hi Daisy123, It is very interesting that you stated that "sometimes it works well and sometimes it doesn't work at all, that's the unpredictablility of it all." The unpredictability is what we are hoping will subside with the Duopa Pump. But in your case that hasn't happened, and you and your DH still deal with the behavioral problems also. My DH has another Urinary Tract Infection right now too, so that contributes to the behavioral issues also. We saw the Psychiatrist yesterday & she said that she could increase the dosage of one of his medications, to deal with his hypersexual behavioral issues. But we are going to wait until next week when my DH sees the MDS and my DH decides if he wants the Duopa Pump, or try to reduce the Rytary, or something else that the MDS recommends. I only want to do one thing at a time, to try to figure out what really helps to make a difference. The Psychiatrist still believes that he needs to be in a nursing home. We do not have long term care insurance, so when I make the decision that, that is our only option, it will be a major decision. Trying to get the dosage of Levodopa at the right place so that he can walk without having all the side effects, I suppose is really asking for a "Cure". I guess this is asking too much. I hate this disease, and I hate the side effects of the medication that can only be dealt with by adding more medication. I am so glad that you told me about all that you are experiencing because for my DH to go thru the surgery, the side effects of the Levodopa, the chance of infection, and the maintenance, it may not change anything. And as long as Rytary is tolerated by my DH, it may be our best option. In your case that your DH didn't tolerate the oral medication, I am glad that you had the option to go to the Duodopa Pump. Thank you again. Because there is no "Cure", I guess we all need to help each other. You have certainly done that for me. I will let you know what the MDS recommends next week. |
| ||
| Glad to be of some help, Elaine. Good luck with your visit next week. |
| ||
|
When we were changing my husband's medication by giving every 2 hours, the MDS mentioned about the pump, but I didn't realize until now how complicated it was. We don't give the meds every 2 hours anymore. It was just an experiment. He still tolerates and swallows the pills so I hope that continues as the pump has many issues it seems. |
| ||
| Daisy123, We saw the MDS this week. He is concerned with the behavioral problems and hypersexuality also. He agreed with the recommendation by the Psychiatrist to increase the dosage of Paxil and also recommended discontinuing the Gabapentin. The MDS feels that my DH needs the dosage of Rytary to function. The problem is that in order to raise the dopamine in the part of the brain that needs it to function, it is too much for the other parts of the brain, so therefore it causes behavioral problems. My DH is still battling problems with the catheter also, so the MDS has tabled the Duopa Pump at the present time. The MDS said that the Pump will not solve the behavioral problems. He said that we can talk about the Pump again in the future. I think the Duopa Pump is a great option for some people, but I don't know if my DH will benefit from it. |