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My husband, an athletic, stable, hardworking father and attorney, was diagnosed in 1987 at age 33. PD "Syndrome" affected all five of us in the family over the horrific 27 years John suffered until he died in 2014 in a nursing home, leaving behind three broken-hearted daughters. John muscled through four DBS surgeries, which seemed to help some with the tremors. The most painful part of his disease were the symptoms he had that everyone in the family was carefully trained to deny because they were "socially unacceptable" in his family of Ivy-League values. John became horribly depressed, anxious, and psychotic about eight years after diagnosis. He became addicted to benzos to treat the anxiety; however, a benzo addiction mimics PD symptoms. By denying his addiction, his health deteriorated more than PD alone would command. The depression caused him to attempt suicide several times; again, the issues driving his depression were never confronted. He was even violent, attacking our oldest daughter and me one early morning, which led to his arrest and retirement from law. We separated and eventually divorced after 27 years. John was paranoid and accused me of things I had not done. Our oldest daughter didn't speak to him to five years after he beat her up at age 11. When she was older and safer, she resumed a loving relationship with him. Two of our three daughters have suffered mental illnesses and drug addictions. I, too, was very ill with depression caused by living with a crazy situation. PD stole John's body slowly over the years. He adapted. The worst part was having the disease rob him of his mind and emotions. If others notice signs of depression or misplaced anger in a PD patient, consult a good psychiatrist who has experience treating PD. Talk about it. Don't pretend the disease is responsible for every malady; some family issues need resolution. And be sure to protect the children. Our daughters were used by grandparents to be the caretakers and companions for John, which was unfair and unhealthy for them. No other family members would help, except from a distance. The damage done to our daughters cannot be fixed. Parkinson's is a bad disease that affects the entire family. Everyone suffers, and everyone needs support and treatment.
My husband was diagnosed with very mild Parkinson's disease Jan 2015 and he became ill when taking Co-careldopa 25/100mg and Rasagiline 1mg.He became very psychotic and was taken to a Psychiatric hospital in August where he was given 400mg of Quetiapine , Fluoxetine 20mg and Mirtazapine 30mg .During the past few weeks the Dr has gradually taken him off the PD medication resulting in no symptoms of Parkinson's .So now there is doubt about initial diagnosis. He had just started taking the high blood pressure tablet Amlodipine when he was diagnosed .Could he have had drug induced Parkinsons? I would be very grateful for any information about drug induced Parkinson's and how Psychosis should be treated with Quetiapine.
Hello - it's time to for my wife and I to stop trying to go at it alone in managing her PD and side effects, and I'm really glad I finally found these forums - in lurking the past few days, I know we’re not alone in what we're going through with side effects, med management, and looking at alternative treatment. I found others who are having similar issues, including a thread from LoveofMyLife that prompted me to share our story of psychosis. It’s a very long one – sorry for that, but so much is going on and I’m sharing in hopes it helps someone else while we struggle with the disease. And I think sharing this story will help me. Our Family Dynamic: My wife at 44 years old has PD (Dx at age 41); I am the caregiver; we have two young children, the older diagnosed with ADHD, whose behavior can make my wife’s tremors worsen very quickly. She’s been on various medications, mostly carbidopa/levodopa, agonists, as well as depression and anxiety meds – AND ADHD meds! Most recently, her dosage of Stalevo increased. (I’ll share the dosage history of her med cocktails later – or she may herself, once I convince her of the value of this group – she has slowly begun to open up about her disease now that it’s become too obvious to hide). We have a big challenge in that we don’t have doctors who provide holistic treatment, which will be changing soon; the MDS treats the PD…and a separate psychiatrist treats the side effects of the PD meds (even if the med dosage is causing the psychological effects), as well as depression/anxiety…but they don’t talk to each other to jointly treat her. Very frustrating. Today: As I write this, my wife is in a behavioral health unit on a 72 hour involuntary hold (the dreaded “5150”). We’re talking about a completely normal, independent, otherwise healthy, woman who is absolutely sane – when the PD meds are right. This is her third stint in a behavioral health facility and her second involuntary hold in 12 months due to psychosis – all stemming from the same triggers and delusions: That she has uncovered an international art/antiques crime syndicate, and they now know she has discovered them. She is convinced this group is plotting to kill her and her family in order to silence her. That they’re following her, have “bugged” our house, tapped our phones, and will kidnap our children from school. She has called the FBI several times this week – even from the BH unit - to report this criminal syndicate – simply to make sure they know what’s happening, and then and only then when her word gets out, she’ll feel safe that they can no longer silence her; she has told the story to a lot of friends and family to make sure they know, in case she or my family are killed by the syndicate. She also plans to make sure every news outlet knows about the crime ring and who is involved. She has always thought like a private investigator – even before the disease, but has never made these types of connections until the meds and lack of sleep get to her. I’ve attempted to reason with her about coincidences, that it wasn’t a person’s shadow she saw outside at 3am – it was a ‘possum, and that even if there is some sort of international art crime ring – and there are – she’s the least of their concerns and wouldn’t care about her. Yes, there IS plausibility at the heart of the stories, since there are indeed art crime circles…but the links she’s making, and that there would be such an intricate and costly plot to assassinate her simply are not real in the outside world. She comes in and out of lucidity, recognizing this is in her head at one minute and can describe the more realistic reasons for her connections, then later on moves into full blown psychosis and fear. This has gone on now for three days. Regardless of when she’s out of the episodes, what she’s seen and experienced is very REAL in her mind – so I’m expecting some PTSD out of this. I finally get to visit her this afternoon. Rewinding One Year Exactly one year ago – to the DAY - the same thing happened; it was her first psychotic/paranoid episode and I had never experienced anything like it in my life. The same triggers as now, stemming from art work and secret messages she believed were contained in a box of books on tape she picked up at a local thrift store (since she is unable to work, thrift stores give her a sense of purpose – buying little gems people give away and attempting to resell for a profit, including art and antiques). She was convinced the tapes had information about the syndicate – and the people were in the store watching her. One tape in particular, The Odessa Files, was the one that held the secret messages; she bought them, knowing people were following her out the store, and she took them to the local sheriff station to explain she thought there were secret messages contained in the tapes. They thought she was crazy, put her in the back of a deputy’s car, and drove her to the ER. I was on the other side of the country at the time, so called her psychiatrist to get him involved and returned home immediately to be with her; in the meantime, she was transported to a local behavioral health unit under the care of her psychiatrist. She was put on anti-psychotics, her PD meds were stabilized, and her dosages were changed. She was released to me 4 days later, and did ok – but still needed to get to the bottom of things. At the time, she was on Sinemet, Mirapex as well as a few others prescribed separately by her MDS and psychiatrist. She seemed fine for a couple of weeks –although she did make me listen to the tape, and it was just that…the Odessa File being narrated. I convinced her finally. Then four weeks later, she started thinking back to the cassettes and other triggers related to the crime ring – going back to the thrift stores we’d discussed cutting out of her routine; she needed closure to prove she was crazy to believe it all – that the art and other antiques were being “laundered” through thrift stores by an international ring. She quickly became convinced she had solid proof, and that they were following her again and in our attic, even hiding in tiny crawl spaces. She was convinced they piped poisonous gas and smoke coming through the chimney into our house, and they were going to burn the house down, that they disconnected the water to our house so that we couldn’t put out the fire. She bought several fire extinguishers and used firemen’s jackets and made me keep them on the kids’ beds while they slept. One night, she heard footsteps on the roof, went outside, and saw someone jumping from our house into a tree (that didn’t really happen). She told me they had just covered our roof with a cloth saturated in flame accelerant and she SAW IT sitting there, why didn’t I see it? I went out there and tried to show her it wasn’t there, but there was no convincing her. She settled down and seemed fairly OK, but called 911 while I was asleep. The deputies came, and she didn’t think they were real deputies and was terrified; so she made them get the fire department (with the parade of sirens and lights at 1am). She went to the hospital with the fire department, which is where she wanted to go. The next morning, while I was talking to the nurse over the phone, I heard a commotion – my wife was escaping from the hospital, convinced the doctors and nurses were hired by the syndicate to kill her. She ran out to the parking lot with her wooden cane, jumped a fence, chased by hospital security. She broke her cane on the ground to make a sharp weapon to defend herself from them, but was tackled, brought back in, restrained, sedated, and put on a 5150 hold… She was moved to a local university, where a panel of well-known PD specialists AND psychiatrists jointly observed and treated her. A few days later, she was released, doing much better, although still with a few lingering questions – and perhaps a bit of PTSD – because what she felt happened was so vivid and real in her mind. I have a tough time relating to this, but I’m trying my best to not force reality upon her at the wrong time – which seems to make it worse. Over the next few weeks, she slowly regained her clarity, and everything was great. Since she’s terrible at remembering to take her meds, I put Med Helper on her phone and programmed everything; urged exercise and diet changes. Even still, she’d forget, which really only had an impact on her tremors and movement. Then her psychiatrist put her on Concerta, then Adderall, then Vyvanse, thinking she was ADHD, saying it would help with PD. Really? Someone who can’t sleep already, we’re giving a stimulant to…she has recently taken herself off that, knowing it’s making her worse. She’s off that now for one week, but I think she’s been taking way too much carbidopa/levodopa AND Stalevo…and still not sleeping. That’s when the trouble began this time. So there’s our story as of today! She’s feeling better, and we are now in the search for a holistic treatment center, and I’m investigating various universities in Southern California. She’s even considering DBS more now, which terrifies her because of the 1-2% risk with our kids being so young. But she recognizes this can’t go on. In the meantime, I’m going out of my mind, struggling balancing support, kids, and is so exhausted it’s impacting my job – which I need to keep in order to support us; and I have to fly out of state again on Monday! Maybe it’s time I find someone to talk to, but writing this out for the first time ever, as long as it is, actually makes me feel a tad better. History on the Diagnosis: My wife is 44 years old, diagnosed with PD 2 1/2 years ago - she'd been continually diagnosed with essential tremors for 7-8 years prior; the tremors started in her left arm, and within 18 months of PD diagnosis, spread to both sides of her body and began affecting her gait. In February 2012, she was put on a test run of Carbidopa/Levodopa. If it works, they said, she has PD. It worked. She was crushed, and I felt so guilty for pushing the neurologist who kept telling her it was just essential tremors, which made her feel better. Even on the day she was tentatively diagnosed with PD and given carbidopa/levodopa as the test, the MDS still said it was essential tremors after doing the standard movement/rigidity tests. He was ready for us to leave, but I insisted he do the tests one more time – “watch her walk AGAIN” (I'd seen it every day, and it seemed like there was more to it). With the look in his eyes after the retest, I knew he’d finally seen what I saw in her gait. Doctors are humans, too.