For those who care for someone with Parkinson's disease
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| My father is 95 years old with PD. Symptoms starting occuring when my mom passed away 4 years ago. This morning I called him to see how he was doing as in the last month, he has been more confused and hallucinating during the day. I was totally shocked when he started talking, joking and laughing uncontrollably. Suddenly the laughing turned to sobbing and crying. I couldn't understand what he was saying. I said, " its doesn't matter what day of the week it is, it can be any day you want." With that, he said, "okay" and hung up. I rushed to his home and had more of the same. Talking. Laughing. Some of the conversation did not make sense but other did. The laughing and talking was non-stop for a couple of hours. Finally at about noon, he had a snack and fell asleep in his chair. When he woke up, he was pretty mellow. He also has started to think that the family is lying to him and that my sister, who lives with him, is involved in "crime" and other clandestine activities. I am very distressed about this change. Is this normal for PD? Could we be dealing with some other issue? |
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| spaniel. Hi welcome to the forum. My first thought is to check His medication and how He's taking it? Too close between doses? Too many at a time? Our medicine needs to be checked and monitored to make sure the right benefits are reached verses side effects. Do you happen to know what med's he has? That will help sort this out for you. Again welcome, all here will try to help make some sense out of this dilemma for you. Take care best of luck and hang in there. |
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| Thank you so much for replying so quickly. He takes carbidopa/levo 4x's a day@8 am noon,6 pm and 9 pm. He takes Ropinirole .25mg at the same times with the carbidopa/levo. He was taking .5 mg of Ropinirole but that was cut back. He was on Seroquel, but my sister, who lives with him, took him off of it and threw them away because she thought it was contributing to hallucinations. She also felt that it was making him so sleepy that he couldn't keep awake during the day. I did not agree with that, but she is the primary caregiver. He takes a myriad of other meds for high blood pressure, bladder control, etc. When he was taking the Seroquel, he would fall asleep and when he woke up, he had assimilated the last thing he saw on tv into reality. For instance, he called me and told me that my sister was "involved in a poker gambling ring". Couldn't convince him otherwise. He has been off the Seroquel for a week, but he called me today and insisted that she had a boyfriend and had run off and gotten married. She is a divorcee and 61 years old and works 9 hours everyday and cares for him. |
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| spaniel1, I looked up ropinirole as I have no experience with this drug. If you click on this link; http://www.drugs.com/cons/ropinirole.html it will take you to a site consumer information on this med and side effects that may occur. Hallucinations is listed. Hope this helps. Take care, best of luck and hang in there. |
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Many older people get less benefit from the PD meds as time goes by. Often in the later stages, the best treatment may be carbidopa/levodopa only. Ropinirole is generic Requip. It can contribute to this kind of behavior -- so can carbidopa/levodopa. His meds should probably be re-evaluated. PD itself can contribute to delirium and hallucinations, so it's hard to figure out. Seroquel is often very helpful with behaviours of this type -- and I believe that discontinuing it suddenly can trigger delusions. Did your sister stop the Seroquel recently? If so, that could be at least some of what's going on. Again, I think his neurologist should be consulted. Sue Edited to add: I see that the Seroquel was discontinued a week ago, and that makes me think it's a rebound from stopping suddenly. He really should see his neurologist. |
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| I would like to add that everyone is different but any PD meds and any meds like seroquel need to be weaned off. You can't suddenly stop taking them as they do give very severe "side efffects" . hallucinations is one and they can last for several weeks .... |
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| Went to the family doctor today and discovered that the neurologist was the one who told my sister to discontinue the Seroquel and not wean him off of it. Today was a bit better. Our family doctor wants to try Buspar. Ropinirole has been cut down. He was more in tune today. We were able to have a conversation that made sense. He is still somewhat paranoid. Thinks we are plotting against him. He is also worrying a lot about the after life even though he has been a Christian for many years. |
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| This is psychosis. Unfortunately, I'm quite familiar with it. With close monitoring by your doctor, you should be able to adjust meds, etc., to help with this. It may help to keep a diary. I keep one called "medical incidents" that I think may be helpful to relay to the doctor if it is not something that needs to be relayed right away. Sometimes we forget what we need to bring up at appts. and things that you note should be documented so they aren't forgotten. |
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Spaniel1, is his neurologist a "garden variety" one, or a movement disorder specialist? I found that my father's original neurologist was not at all knowledgeable about PD meds, and was not at all in line with current research. I ended up changing to a movement disorder specialist, who was much better able to manage the medications for a late-stage patient. I just can't believe that a competent neurologist would tell your sister to discontinue the Seroquel abruptly. |
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| Spaniel1, I too am surprised that the doctor discontinued the Seroquel abruptly. Any psychotropic drug should be weaned gradually. The psychosis could be from that, but it is also not unusual for people with Parkinson's to have delusions and hallucinations. It's confusing because it's a symptom that can be caused by medication and/or by the disease itself. It's so frustrating to try to figure all of this out. My husband has the psychotic symptoms (delusions and hallucinations) and they seem to come and go. Believe it or not you will get used to it if it doesn't go away. The hallucinations (seeing or hearing things that aren't there) are easier to deal with than the delusions (believing something is true that isn't). Hang in there. |
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| I can't tell you all what a blessing it was to see your posts this morning! My mother is 69 and was diagnosed with PD 20 years ago. I've been her primary caregiver for 11 years now and, although it has never been boring, we've handled all of the PD issues pretty well until now. She has always had an "active" imagination and has seen "sinemet people" lurking around but in the past three weeks her hallucinations and paranoia have become uncontrollable. She believes that someone is filming a movie in our back yard/neighborhood and gets angry when I can't see the cameras in the trees, the crowd of people, etc. She also believes that I am inviting crowds of people into the house while she is sleeping at night. She wakes me up to tell me to tell all of my "friends" to leave. I've tried everything, but she is getting more and more agitated and just plain mean about it. The paranoia has come from the "plot" I have created by getting my "friends" to stand at the windows and watch her - even having someone construct a facade on the neighbor's house to confuse her. She now says that I am trying to drive her crazy so that I can put her in an institution. Anyway, the doctor put her back on Comtan (in addition to her Sinemet and Requip) about a month ago and from reading your posts I'm thinking that this is a medication problem. I'm also considering the extreme heat these past weeks in Coastal SC. Thank you so much for posting here - it makes me feel so much better to know that I am not the only one facing these problems. It gives me new hope that we are not spiraling out of control here! Now I'm off to call the neurologist! |
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| kmseyinsc, Hi and welcome to the forum. Watch for dehydration in hot weather! Living with Parkinson's Disease is likened to doing moderate exorcise constantly. With the poverty and slow stiff movement, tremors, etc. We have to be wary of dehydrating. Unfortunately We patients don't have the luxury to "limit exorcise" to early morning or evening after the sun sets as health experts caution in hot weather. Our basic ability to function and live equals exorcising in "normal" people. This dehydration can and will effect the levels and actions of our daily medications. Again welcome, keep posting. We're all here to help. Take care, best of luck and hang in there. |
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| KM ... we too are in SC and the heat has been awful for my guy these last weeks. As LO said watch her closely right now for dehydration. Also her hallucinations could very well be from the heat, our PCP told my guy to be extremely careful and try not to be outdoors so much, to get in the air conditioning often and drink lots of gatorade. That has been very hard since we live on the lakes and fish as much as possible, and add in the fact my guy loves the outdoors too much to sit in the house it has been really hard for him. He hasn't had any hallucinations but he has been visibly more dizzy, as he staggers more and has more of a hard time walking. His legs over the last week have swollen back up again after a nice reprieve. |