March 20, 2018
My husband is about 8 years into his PD diagnosis and is dealing with increasing paranoia and making unfounded accusations. Has anyone else dealt with this? And if so, have you found a way to effectively respond to the evidence of these symptoms?
March 22, 2018
Hi tstuart - thanks so much for posting! I'm so sorry to hear about your husband's paranoia. I'm sure this is really hard on both of you. You're definitely not alone in dealing with this. I thought that I'd share this article with you while we wait for others to chime in: https://parkinsonsdisease.net/living/mental-health-breaking-stigma/. I hope this helps. Please keep us updated! - Chris, ParkinsonsDisease.net Team Member
May 8, 2019
Long before my wife was diagnosed with PD they had diagnosed her a bi-polar then as having schizophrenia. They started treating the schizophrenia but the atypical-antipsychotics used actually reduce dopamine so needless to say made things worse. She would take the antipsychotics, the hallucinations and paranoia would increase, they would increase the dose in a never ending downward spiral.
At this point they can't tell me if she has schizophrenia or it is all PD. They at first thought the PD was medicine induced tremor until the DaTScan confirmed the underlying PD. So now having changed the antipsychotics to ones that are less harmful to PD patients and starting Sinemet and Neupro there is finally some improvement. But recently, after less than a year on Sinemet I am seeing signs the symptoms are increasing.
You should be seeing a good medical psychiatrist familiar with patients with PD or at a minimum patients with cognitive disorders in addition to the neurologist. Make sure the two of them coordinate the care, they need to talk, and then there are medications that can help with the paranoia without interfering as much with the PD medicines. But the two Dr's need to coordinate care. In addition increasing the regular PD medicine might be an option as the paranoia is probably PD induced. We saw both Dr's last week and both adjusted the medicines to help deal with the issues but we made sure both knew what the other was doing.
One thing that helps us is that all the Dr's we see are tied into the same larger medical complex and share the same electronic notes, etc. but I realize that isn't an option for everyone. Don't assume Dr's will coordinate care sometimes you need to do it for them.
June 7, 2019
My husband has just been diagnosed with PD. We are interested in hearing about the personal stories people are experiencing so we will be aware and well informed when the different symptoms of PD begin to appear. The month of May 2019 will be a day we will always remember as a turning point in our lives. We will try to live in the present, one day at a time. It is nice to know that there will be support at our fingertips whenever we feel uncertain and afraid. We are so grateful for this community of caring and informative people who are living the same soul alchemy journey. We will be transforming into different levels of humaneness and with your support and knowledge, hopefully into a form of transcendence only people touched by the diagnosis of PD and their loved ones experience.
June 7, 2019
Hi, @sherryripepi - Thanks so much for taking the time to post. I hope that you and your husband find valuable insight about this new chapter in life. I'm so glad you found us! I thought that I'd share some insight for newly diagnosed folks from one our our patient advocates, who has been living with PD for over 30 years: https://parkinsonsdisease.net/living/direction-newly-diagnosed/. I hope this helps! Take care. - Chris, ParkinsonsDisease.net Team
August 23, 2020
My husband is also about 8 years into his PD diagnosis. He is 63.
In February I went through a terrifying time. My husband, who I have been married happily to for 42 years suddenly became paranoid with violent hallucinations.
He accused me of cheating on him, so he placed video cameras in our home without my knowing. He also started proceedings to transfer money in our accounts so I had no access.
He said every day he didn’t love me any longer and he was moving out that day.
He would disappear for hours at a time saying he was going to show the “evidence” of my cheating to some unknown (and invisible) friend.
He saw monsters in the house and took a stick and bashed many items to pieces.
I have never had to call the police since we never have had a “domestic”. In a two week period I called them 7 times.
Each time they just placated him and left me alone with him even though the violent episodes were increasing and I told them I was in fear of my life. Do NOT expect help from the police, EMT’s or any other emergency services. They cannot remove the person if he does not want to go. I have no family at all here and no friends wanted to help me.
I managed to get him on a plane to another island where his movement disorder specialist is. She put him on anti psychotic medications and stopped his sinemet (she said he was over prescribed).
After about a week he started to shed the paranoia and hallucinations. I have been diagnosed with PTSD as a result of this.
Things are better now in that respect - he has had no further incidents.
Get your loved one somehow to a movement disorder specialist - I cannot stress that enough. If you are lucky enough to have family or friends or support groups that understand....give yourself a break from the craziness if you can.
I will never be the same after this terrifying incident - but I had zero support here. Find some support in your community and if you feel you are in danger - tell the police that - they probably won’t do anything - but at least you tried.
My heart goes out to you. I NEVER thought this violent episode of PD Psychosis could happen. But it can.
Please find support for yourself and if it is violent, hide the things that your loved one could easily use to get violent with.
I send you my prayers. I personally don’t think I could go through it again.
August 24, 2020
Thank you for sharing something so personal with the community, @koloagirl. It's so helpful for others in the community to know they're not alone experiencing situations like you went through. I can't imagine the fear and danger you felt, but I'm so glad to hear you were able to find help and that there hasn't been any further incidents.
We know symptoms of hallucinations, paranoia, and agitation are at no fault of the person experiencing them but the disease. That said, these symptoms can have a scary and violent impact on a person and their family and friends. It's so important to remember that the safety of you and your loved one should always be a priority. When situations like this occur, finding and reaching out for support is so critical, as @koloagirl mentioned.
And, if anyone in the community ever feels like they're in a situation where they do need help, know the Domestic Violence Hotline is a resource available: https://www.thehotline.org/.
- Kelly, Community Manager