For those who care for someone with Parkinson's disease
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Well, we went to the doctor and have started Nuplazid. Our attempt at a drug holiday was a dismal failure, and we cannot continue like we are. So, we added this med in. I will keep everyone informed on whether it helps or not, as the reviews I have read are very mixed. I hope that we are in the category of people for whom it works wonders. I think what did it for me was my husband pooping in the cat's litterbox. Yes, you read that right. He took the cover off, set it by the door, and then pooped right on top of the cat litter. He left it just like that, several huge human turds laying on top of the cat box that I had cleaned that morning. There was no mistaking what had occurred. I had to ask him about it, and he told me that he had read a little booklet that said it was perfectly OK to poop in the litterbox if you need to go. My husband hasn't read anything in years because it's too hard for his eyes to track, and of course there is no such booklet. When I mentioned this incident to the doctor at our appointment, of course my husband was not happy. He doesn't like people knowing what is going on, but my days of keeping silent are over: we need help, and can't get it if we aren't honest with our doctor. I was a bit surprised that my husband repeated to the doctor what he had said about reading the little booklet, and then added that pooping in a litterbox is an "approved technique"! (I almost fell out of the chair when he added this new little tidbit, and it was hard not to laugh at the characterization). I noticed the doctor wrote a lot as my husband explained things. Heaven knows we need a change, and hopefully this will help. We were given some samples, so we'll try it out for a few weeks before we have to actually pay for it. |
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Lurking, I'm so happy that you've finally been able to be out in the open with your doctor. I'm sure you will be getting the help you have needed for so long. It may not be immediate but your doctor now knows what's going on with your husband. I'll pray that the Nuplazid works. HUGS |
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Oh I so hope the Nuplazid works for you all, you are in SUCH a difficult situation with all that going on! We're not just talking about accidents on the way to the toilet, he is choosing, in this case, to use the litterbox and even defending his choice...but these problems fall to you to deal with, and it's so unfair, you already have so much to deal with...so I hope you find some significant help with this new drug. And you've got to continue to report these things to the doctor, he has to be on board to help you out. Hugs to you! |
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Lurking, after reading this and then rereading your post, the one thing that is so glaringly bothersome to me is that your husband's doctor seems clueless...I would strongly suggest finding a new one. There is NO way I would tolerate not getting help from my husband's neuro on something as serious as you describe. I find it unforgivable that he/she did nothing to help your situation! Just my opinion, but doctors are there to help, not just the PWP, but the family. Quality of life needs an advocate for the good, not just someone who says, "try this, then come back." That said, I hope the meds help give you both some relief. Good luck. This is in NO way a criticism of you or your concern for your family. I just cannot imagine continuing to go to a doctor who does not truly seem to understand the severity of the situation. My MIL went to three different doctors before they found the perfect fit. My husband did, too. It isn't unusual and might be the change and help you so dearly need. |
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I sure hope that the Nuplazid helps prevent the irrational behaviors that your husband has been doing. My husband also takes Nuplazid. His Psychiatrist prescribed it because the Seroquel/Quetiapine caused dyskinesia for my PWP/DH, so she took him off of that. The Nuplazid helps his night time threatening hallucinations, but he still has day time hallucinations that aren't so threatening. My DH started out with a neurologist and then because of behaviors, was referred to a Psychiatrist by his General Practiioner. The Psychiatrist did more for him, concerning the behaviors, than the neurologist. Then the neurologist said that she couldn't do any more for him because she wasn't a Movement Disorder Specialist, but when I asked for a referral she couldn't help us. So we had to search out our own MDS. My DH has so many complications and sees so many doctors, and I don't know which doctor to ask which questions sometimes. But you may want to ask your General Practritioner to refer your DH to a Psychiatrist or Neuro Psychiatrist if the behaviors don't improve. I wish there were better clear cut answers. Things keep changing so we still don't have everything figured out. The non-motor symptoms are harder for me to deal with than the motor symptoms. Wishing you the best. |
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I know it's only been a week, but I am not so sure about this new drug Nuplazid. Not only are my husband's hallucinations and delusions not gone (not that I expected that), but they actually seem worse. He talks to himself almost continually, or to an imaginary person. Almost everything he says is either a hallucination, and/or makes no sense. Scariest for me, he does not seem interested in food, even when I make exactly what he tells me he wants to eat. He will let it sit there, getting cold, and tell me he'll eat it later (and he won't, and it gets gross, and then he doesn't want it). Or he will only eat part of it, and that part is not enough to keep him healthy. I cannot believe that the most gifted man I know is sinking into this abyss and I cannot stop it. We were told it takes two months to see any results, so I'm trying to keep that in mind, but it's hard when I see my husband talking to no one and carefully putting imaginary files on the coffee table as if it were an office desk 
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I know that every PWP reacts differently to medications, but I can tell you our experience with Nuplazid. My PWP/DH started on Nuplazid in July 2016. My DH has had hallucinations for a long time. At the time the Psychiatrist prescribed the Nuplazid my DH wasn't experiencing scary hallucinations at night like he had in the past, but he was still having non-threatening hallucinations night & day. She was hoping it would prevent the scary hallucinations from coming back or prevent the hallucinations from getting worse. In Dec. 2016 I called the Psychiatrist saying that the daytime hallucinations were getting worse, so I didn't know if the cost was worth it. So she said to take him off of the Nuplazid, so I did. After being off of the Nuplazid for about a month his night hallucinations were getting scary & threatening again, so I called the Psychiatrist and she put him back on the Nuplazid. It seemed to help the scary hallucinations, so he is still on the Nuplazid today. My DH also has a catheter and at about the same time as the scary night hallucinations started, but after we had put him back on the Nuplazid, we found out he that had a Urinary Tract infection. That may have contributed to the scary night hallucinations. We don't know. My DH has been talking to an imaginary friend for a long time, before the Nuplazid. But if your husbands symptoms seem to be getting worse, I would call the Dr. before 2 months. We experienced the not eating thing when my DH went from Sinemet to Rytary. He lost 50 lbs, but has put them back on since we got the dosage closer to being right. That's a fine line. My DH is now trying to decide if he wants to go ahead with the Duopa Pump, which he has been approved for. He was not approved for the DBS surgery. Now my DH is experiencing severe bladder & penis pain again. He has had this for over 2 years and no Dr. has been able to figure it out. It gets a little better & then worse again. This damned disease is like Robin William's wife said, "It's like chasing Wack-A-Mole." |
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You might try to get him some Ensure to drink, to make sure he's getting enough nutrition, we have to buy that because my husband kept losing weight, he has food malabsorption we think (they couldn't find any other reason he'd be losing weight like that, because he is eating), but you want to get the Original kind, because it has the least protein of the choices available, and try to get him to drink it an hour before or after his meds so the protein in it doesn't interfere with the sinemet. ((Hugs!)) |
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Elaine, Your description of how your DH is, is the closest thing I've read to how my own dear Hubbie is. The lurching from On to Off like a light switch, up and down several times per day, constant need for me to be near. He too, has been Dx'd as suffering from DDS but I disagree with the Dr's here as he does not fit the symptoms, but he fits DLB down to a tee. And, we also had to discontinue the agonists as he became hypersexual. However, Dh has had the Duodopa pump for several years now and whilst it was a Godsend in the initial years for the motor problems it has been of no visible benefit in slowing down the cognitive decline. The only suggestion I would make for your DH, is that it might help the hallucinations/delusions if he still taking too much dopamine, but if you have tackled this problem with the Rytary then I would question how much the Pump would benefit him. And he has all his other health concerns as well. IF I remember correctly, before the pump, my dh was taking 2 100mg tabs every 2 hours (6am - 11pm) plus 6 entacapone plus 200 mg CR at night plus his other meds.. so he still wasn't up to what your DH was on. |
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Daisy123, My DH has been Dx'd with DLB/Parkinson's Dementia too, so I am wondering how the cognitive decline affects the Pump? It won't slow it down, but are there concerns about not remembering he has the Pump? I think the MDS is hoping to reduce the dopamine by going to the Pump. So, like you said, that might help the hallucinaions. I believe that some of my DH's behavior symptoms seem like Punding/OCD, and reducing the dopamine is supposed to help that too. When my DH's MDS put him on the Rytary, they weren't trained in the Pump yet. My DH has a catheter and is concerned about having 2 bags hanging on him. Do you have any thoughts on that? |
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Dear Lurking, I really hope that you have seen some improvement in your hubbie's condition by now. If not, I would go with your gut feeling. If you think the Nuplazid is actually making him worse you will need to address it. It is still a very new drug and as we all know everyone reacts differently to meds. Just as one person may react favourably, another may not. In our case, exelon was prescribed for Dh. Now it is supposed to be the gold standard drug for behavioural problems. But it actually had the opposite effect and he became much worse. But the docters persisted saying, he needed to titrate to the higher dose before any benefit would be seen, so we tried it again for several weeks but in the end, had to take him off it again as it just didn't work. But it does benefit the majority of those who use it. Trust your instinct, you know your husband best of all. |
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Dear Elaine, I will address your question on a different thread so as to keep this thread consistent with Lurking's subject Hugs x |
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| Daisy123, Thank you, you are right, I willl open a new thread concerning the Duopa Pump. |