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Topic Dad newly diagnosed, any advice is welcome Go to previous topic Go to next topic Go to higher level

By smith2628 On 2009.11.04 13:50
Hi, my father was recntly diagnosed with Parkinson's. This is all new to me and I have been taking him to his doctors trying to understand what's next. He has suffered from bi polar disease for over 30 years and they have taken away all his meds because they are not good for his new diease. He feels very depressed. They are saying he should use Seroquel or clozapine. I hope that helps. My biggest new concern is that yesterday he woke from a nap and didnt know who my mom was. He was also asking for his mom who died years ago. It lasted at least 5 full minutes which seemed like an eternity to my mom. Is this normal? Or does it have something to do with the anti parkinsons medication, Levodopa? Or does Parkinson's cause hallucinations all on its own? Id appreciate any feedback. Thanks

By LOHENGR1N On 2009.11.04 16:13
Hi and welcome to the forum. Wow what you've got is a whole lot of different things going on. While We say here everyone's package of Parkinson's Disease is different (symptoms, progression and such) with bi-polar and Parkinson's it's a horse of a different color! However there are a few caregivers here struggling with issues you are facing. I'm sure they will help. While I can help with answers about Parkinson's, your problems will go beyond what I feel capable of helping with. That said please keep posting and asking questions! We'll all learn together and help as best we can in you and your Dad's journey with this. As to the question of your Fathers episode upon waking? It could be many things, still groggy from a dream, adjusting to having bi-polar med's withdrawn, adjusting to effects of anti-parkinson's med's added, delirium from these medicine changes, early signs of dementia? I'm not qualified to say. I do think you should begin (if not already) keeping a diary of His daily responses to medicine, length of any episodes etc. to bring with you to his doctors. This way you won't forget anything you want to ask about and the Doctor will have a better understanding of your Dads daily life. (if the doctor asks to keep it just tell them they can have a copy gladly if they want, but retain yours so from time to time you can reread it to check if something is reoccurring and what helped before etc..) Again welcome to the forum. They're a great bunch of helping, caring People here to help anyway they can. Keep posting, I'll defer to those struggling with similar cases now..take care, best of luck and hang in there.

By smith2628 On 2009.11.04 17:45
Thank you so much for the warm welcome. I read a lot of the forum and it was helpful to know that there are people facing the same issues as my dad and his family. We will start a diary today. I continue to do research and it appears that Levodopa can cause hallucinations. I guess Im hoping that is it and not early dementia. He is only Stage 1 parkinsons but he is 70 years old. He woke up twice again today saying things that didnt make sense. (sigh).....we will have to take it one day at a time. Again, I truly appreciate your welcome and look forward to talking to anyone here!!!!! Take care and thanks a bunch!

By Emma On 2009.11.04 18:13
Hi! I too would like to welcome you to the forum. It has been a great source of information and comfort to me, I hope that it will be to you as well.

Boy ... your family has a lot to deal with! As far as the hallucinations/confusion, it's hard to say what might be causing it, but it's not uncommon. The advice to keep a diary of symptoms is good. I just started doing that myself because I can't remember everything that happens. I'm looking for patterns in my husbands symptoms and I also want to be a better source of information when we see the neurologist. For what it's worth, my husband has episodes similar to what you describe, sometimes it only lasts five or ten minutes, sometimes a whole day or more. Some examples: on Monday of this week he kept asking me where we were and didn't believe me when I said we were at home. He thought we were at someone elses house. He didn't think we had a couch, even though I was sitting on it when he said that. He also thought that one of our neighbors had come over with the military to help put him to bed. One day he wanted to know if we owned all the food in the refrigerator. Most of the time he thinks our mailbox, which is the kind on a post, is a person. Sometimes the confusion/hallucinations are mild, sometimes pretty detailed and longlasting. It only concerns me if he seems upset by it or if I feel like it could lead to dangerous behavior. If you haven't already told the doctor about it you need to do that.

We're here for you.

By Emma On 2009.11.04 18:21
I forgot to mention that my husband is 67 and has been diagnosed with Parkinson's for 8 years. He's had hallucinations from the beginning.

By smith2628 On 2009.11.04 19:58
Thank you so much for writing. As I read your response tears just rolled down my face. I just thought that being in stage 1 there was no way he would have hallucinations like this. But I see now that it is a possibility. Did your husband get prescribed seroquel or clozapine for the hallucinations? If so, did they work? How are YOU getting through this? My mom is already a wreck. I have had to completely take over his care because she is not strong. The tremors are one thing we can deal with, the dementia we were not prepared for at all!!!!! I know we will get through this but it seems like its going to be a very long sad road. I appreciate so much talking to people who know. I have been so alone and so attached to the internet researching one article after another. Im already exhausted and he has been diagnosed for 2 months at the most.
thank you

By karolinakitty On 2009.11.04 20:36
Hi and welcome ... glad you started reading the posts.... these folks have taught me alot.....
Dementia is the hardest to deal with...The best way i keep on top of the dementia is double checking everything. That's me of course. I've come home to some strange things but sometimes it helps me to chuckle at them rather than get angry. When he was diagnosed in January there was some short term memory loss, then he went to mild dementia, then just a month ago he had this intense memory concentration test, and the outcome wasn't so great.
Mine also was diagnosed with bi polar, but in his case it seems it has hidden itself since the PD came aboard. He takes no drugs for his bipolar, but then again that is him. Hallucinations have been few, but dreams are his, excuse the pun, nightmare... he has very vivid dreams, mostly of being chased, he'll wake up and in that particular moment not know exactly what's going on. He has often used me in his dreams as his enemy. He's twisted my arms and swung his arms at me during these dreams, again not knowing what he had done. It's not sleep apnea either....we did that test ...
I know you want all the information you can get ... read as many prior posts as you helps alot .......

By Emma On 2009.11.04 20:43
He has never been prescribed either seroquel or clozapine, I assume that's because the hallucinations are not troublesome in that he doesn't get angry or violent or anything like that. Actually it's interesting that you asked that because just this past week is the first time that I thought I might have to ask the doctor about an antipsychotic (because he had almost two straight days of being out of touch with reality). You have a complicated situation because your dad also has bipolar disorder, I'm sure that will just complicate the whole thing. I get through this day by day, as often as not I'm a wreck too. I cry a lot. Sometimes I don't know how I will last another day but I do. That's what's great about this forum, it gives you a place to vent, to cry, to laugh, to know that you are not alone. Before I found this I thought that my husband had some weird form of Parkinson's unlike anyone else. Now, just knowing that other people have gone through the same thing and actually know what I mean and can empathize has been HUGE for my sanity. No one who is not experiencing this can understand it. Stay with us, we're all in this together.

By LOHENGR1N On 2009.11.05 00:44
Please don't resign yourself to Dad having dementia at this time. Could He be showing signs of early stages of dementia? Sure but also with the bi-polar involved it could be signs of this disease also. Take notes discuss them with His Doctors, get testing done before giving in to this being dementia. However keep in mind as many have stressed here the risk of dementia with Parkinson's is strong and not addressed as it should be. Many Caregivers/Partners like to know about the possibility of dementia and what to look for, to be prepared and get early intervention to help slow down this aspect of Parkinson's which is admirable.

smith2628, I'm a Patient, I can tell you adjusting to medication at times is very unnerving. We as patients don't know what effect they will have upon us. The "gold standard" medicine since it's discovery has been carbidopa/levodopa or Sinemet. Side effects can be hallucinations, anxiety attacks, confusion to name a few. Anti-Parkinson medications are mind altering (think about it, they have to be to work) Sinemet is used to replace dopamine a neuro- transmitter that our brains no longer make. When We embark upon using this it's a guessing game as to how much is needed our med's need to be adjusted, as our brains make less and less dopamine med's need increases and other med's added to make up for our loss. Med's to stimulate receptors in our brains and med's to turn off receptors. It's a balancing act trying to balance benefits of medication against side effects from medication. In your Dad's case it is doubly so, too much dopamine in the brain causes the mania in bi-polar so medicine to reduce the production of and level of dopamine is used to treat that. However with Parkinson's Disease just the opposite is so, too little dopamine in our brain hence Sinemet to boost the level of dopamine in our brains. This makes your Dad's case more of a balancing act. Adding both diseases together complicates everything, including adjusting to new medications and reactions to the medicines. Take care, best of luck and hang in there.

By smith2628 On 2009.11.06 14:57
Thank you for your response. Wow. That is a lot of information and great information as well, especially from a patient. I have hope now that its the medication. Of course, we are keeping an eye out for more strange behavior and will discuss with his doctors. The balancing act between his bi polar disorder and his parkinsons will be a difficult one but I pray we find it. He has 6 grandkids and 4 kids that love him very much and we are just concerned. The doctors never once mentioned dementia which seems strange to me as they told us all the other symptoms of the diease. It should be brought to light. Family members/caretakers need to be prepared for everything.
Thank you so much and I hope that you stay healthy and well. May all the good energy come your way..take care.

By WitsEnd On 2009.11.09 09:32
Hallucinations, delusions, dementia--it all can be a part of PD. However, if this just came up after a recent med change, I would recommend checking with your doctor to see if another med adjustment might help. Everybody's different--and one medicine may be great for somebody and not so great for others.

Hang in there and God bless.

By netgypsy On 2009.11.10 09:45
You said the problem was in the morning. If he hadn't had his meds yet you can have all sorts of problems. What we do is set the alarm for one hour before we wish to get up, give the sinemet (regular yellow and chew it is the best of all according to all our docs), then go back to sleep for an hour. Don't even think of trying to do anything until that hour is up. If he clears up, it's just not having enough dopamine in his system. If it gets worse perhaps his dose is too high.

the most difficult part is getting the right amount. If dopamine doesn't work at all he probably doesn't have PD.

Good luck and let us know how he does.

There is a patch by the way that's supposed to be great for any "mental" problems PD patients have. Excelon or something like that that. We haven't tried it but have read about it.

Hang in there. When you get the right amount and the right time the improvement is amazing. Be aware that FOOD had a huge effect on how well a PD patient responds. Both protein and fats interfere with absorption and transmission to the brain so be sure to give him that morining does on an empty stomach chewed with water. We actually use a spray bottle for the morning water.

By WitsEnd On 2009.11.10 11:20
One of the things we found out with dad was that he had med paranoia. Give him pills and when you weren't looking he'd throw them away or spit them out. Of course, then he got worse because he didn't take the meds. Never take anything for granted. We wound up crushing the meds up in apple sauce and ensuring he ate the apple sauce.

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