Update- ON OUR FATHER WHO RECENTLY BROKE HIS ANKLE WHILE GARDENING, AND THEN UNDERWENT A SUDDEN, UNPLANNED SURGERY ON THE ANKLE , ONLY TO BE FOLLOWED BY THE ONSET OF PSYCHOSIS ALMOST IMMEDIATELY AFTER:
BRIEF HISTORY: My dad is 78yo and was diagnosed with Parkinson's in 2010 but likely has had PD close to 20 years. His great attitude and personal relationship with Jesus Christ, as well as his having been active and hard-working AND having a loving, caring family....all these things I believe have helped keep him doing relatively well, for having had PD this long. Then came the downward spiral following a broken ankle bone and the resulting fast surgery.
PSYCHOSIS: Still been reading up on PD-related Psychosis, since after surgery, our father's occasional hallucinations with insight, turned into distressing hallucinations with delusions and paranoia.
He often doesn't know my mom, his main caregiver. And he yells for and looks around for her, even though she is right there. He believes someone has taken his wife and is going to kill her. And sometimes that she is cheating on him, although well married for 59 years. He also says he is being locked up and held against his will. Dad recognizes everyone else besides Mom. When he is thinking right, he is still very loving and affectionate and thankful toward her.
As our father is coming out of a psychotic episode, he says that "everything keeps changing in how it looks", and that Mom does not look like mom at all, sometimes. He asked one day recently, "How do I live like this, with everything changing its appearance all the time?" So he is not always "gone" and sometimes he talks about his mental problems. He occasionally talks about ending his life due to "causing pain and hardship for Mom and others". Dad trusts me as his person he can confide in about his hallucinations, for I never mind and assure him it's okay, that it's part of the disease. He tells me about the houses and buildings he sometimes sees outside their home, the people coming and going that no one else sees... I hold his hand and hug him and occasionally pray with him. I share other PWP's own stories of their hallucinations that are similar. He likes this.
We hurt with both my parents about Dad's mental state, and we have been studying the topic. My husband and I, and my brother and his wife have been visiting a bit more often and helping out more where they need help most. Also giving time-away breaks by "girls" going shopping, "guys" watching sports or driving around on the golf cart, etc.
We are monitoring closely his dosing of BOTH SINEMET & ZANDOPA, and have found a better strategy so far for keeping BOTH PHYSICAL MOTOR SYMPTOMS & MENTAL SYMPTOMS as good as possible without making one too much worse. Here is what seems to work best:
Dad takes some form of dopamine every 2 hours basically, a smaller dose of SINEMET ALTERNATING WITH A SMALLER DOSE OF ZANDOPA (Mucuna Pruriens, the Velvet Bean, a natural form of dopamine, that is kind of like taking Levodopa without the Carbidopa, as I understand it). Even with this "best" regimen, it is not ideal, and we continue our search for help with reducing the distressing hallucinations and delusions, while maintaining good enough movement to keep him from falling, and from shaking so very bad. I might note that Mucuna Pruriens capsules and Zandopa have always helped him, even more than Sinemet.
STILL...THESE EPISODES COME ON WITHOUT WARNING EXCEPT HIS EYES WIDEN ON MOM AND HE STARES, UNKNOWING. (SOMETIMES HE IS FINE ALL DAY OR 2.) WE NEVER KNOW HOW LONG THEY WILL LAST OR THE INTENSITY. So I have a couple questions:
QUESTION:
Do any of you have remedies to try for psychosis? What about counseling in the form of CBT- COGNITIVE BEHAVIORAL THERAPY? Do you have any SELF-COPING STRATEGIES FOR PSYCHOTIC EPISODES ?
2nd QUESTION:
Do you find ZANDOPA or PILL FORM / POWDER FORM of Mucuna Pruriens more beneficial... and how?
Thank you all and God bless you and yours today!
Written by
rsacdoolittle
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Best to take the unconcentrated mucuna powder, which Zandopa seems to be, rather than the more concentrated versions of levodopa which can cause nausea.
"Initial pharmacologic changes should include limiting the patient’s anti-PD medications to those that are necessary to preserve motor function (ie, eliminating adjunctive agents). Should that fail, an atypical antipsychotic agent is the treatment of choice. Clozapine is presently the gold standard, and quetiapine represents another option because of its ease of use and good tolerability profile. Emerging treatment options include the use of acetylcholinesterase inhibitors, antidepressants, and cognitive behavioral therapy. This article reviews what is currently known about treatment strategies in PD psychosis."
Nuplazid, which has been approved for Parkinson's psychosis, is questionable:
Park_bear, I actually just found and copy/pasted the above information onto my personal PD notes, after church this morning! One thing I learned after visiting them later this afternoon is that he is NOT on Amantadine but he IS taking Pramipexole which I believe is for Restless Leg. I've heard both of these meds can be related to the development of psychosis symptoms. Not sure if he can do without it, but since he generally sleeps pretty well at night, he might try cutting it out or back. I'm really curious about how some have actually been helped by Cognitive Behavioral Therapy counseling sessions and Self-coping Strategies some PWP have discovered help them to actually be somewhat in control of these spells.
I did not realize pramipexole was a potential cause of psychosis, but that does seem to be the case: psicoestasis.com/wp-content...
"In the studies of Parkinson’s disease, the rates of psychosis were consistently and significantly elevated in the pramipexole group compared with placebo (occur-ring at rates of 6%–21% for pramipexole, compared with 0%–6% for placebo). Visual hallucinations were the most common form of psychosis. The doses in these studies were higher (4.5 mg daily) than those used in depression, and in most cases the hallucinations resolved with dose reduction."
Taper the pramipexole dosage slowly.
I could not find much in the literature regarding cognitive behavioral therapy and Parkinson's psychosis, but I agree it is worth a try.
Maybe try magnesium for restless leg? Most people are low. It is the new “no one has enough vitamin D”. Take with vit D and calcium. These are membrane stabilizers and also tend to help people relax, so take them at night. There are three types of magnesium so read what you think would be best for him. One of them may give you a little bit of a loose stool, but for some people that is a plus.
Sandmanliz, I will look for some form of one capsule that contains all 3. It is difficult taking so many different things! I'm sure there's a good combo minerals with on Amazon. And read up on the 3 Magnesium forms. I will share with my parents everything discussed here and usually they want to try what is suggested. BUT IT SOUNDS LIKE SOME BLOOD TESTS MAY BE A GOOD NEXT STEP.....
Tapering my 92-yr-old father slowly off Pramipexole greatly improved his mental state. He was much more "present" after that and there were fewer worrisome hallucinations and delusions. In addition, he had fewer and less severe bouts of REM sleep behavior disorder. In my father, this disorder involved him enacting his dreams in a trance-like state. He'd work his legs up and down in bed ("trudging," we called it) and wake up believing that what was happening in his dream had happened in real life. After stopping the Pramipexole, he still had mild hallucinations and delusions, but they weren't full-on panic attacks. For instance, before tapering off, he frequently thought we had water flooding through the house or fire in the walls, and he was angry with the family for not doing anything about it. Afterwards, his delusions were less dire or persistent. After tapering off the Pramipexole, we then worked with him to reduce his carbidopa/levodopa slowly, and this also seemed to help with his mental state. It especially helped to give him less overnight, as we'd begun to see that the drugs built up in him over the course of the day leaving him agitated and hallucinating overnight.
Park_bear, when I call our family DO general practitioner in a few minutes about scheduling some tests for mineral amounts etc, I will ask him about Clozapine and get their opinion there as well. Our DO's mother has PD too, so there is a special interest involved. I will share what our doctor says on here. And test results. More than likely, our parents will be open to tapering Pramipexole for Restless Leg and depending on test results, adding a Combo Capsule of Magnesium, D3, and Calcium supplement for legs and sleep. B12 as Bookish reported too after tests to see where Dad is currently at. Prayfully, some clues will show up to help. I believe THE ANSWERS ARE OUT THERE WAITING TO BE FOUND. God knows, He created us and sees us. I will be in prayer for Dad and these tests and for each person on this site.
There's so much calcium in most diets that a calcium supplement is unnecessary. An excess of calcium is adverse because it can get deposited in the circulatory system and cause hardening of the arteries. Even non-dairy substitutes such as almond milk have calcium added.
I don't have PD so this may not be relevant but could your father have a vit B12 deficiency alongside? I believe that it can be common in PD. If he was borderline anyway (which is likely, given his age, even without other health conditions), an anaesthetic might have been enough to push him into deficiency, as might the simple stress of the ankle and the surgery. Stress depletes many essential vitamins and nutrients, and if he had nitrous oxide as part of the operation then that can inactivate a significant % of the 'active' B12. A serum B12 test will show both inactive and active B12, so may look ok, but an active B12 test (Holotc) may show it better. Neither are sufficient to rule out a deficiency, testing is far from straightforward, but it might give you some idea. If able to do a full test then check homocysteine, MMA, anti intrinsic factor antibodies, anti gastric parietal cell antibodies, serum gastrin and his full blood count for clues, such as MCV, RDW. Remember serum can be low, medium or high and there still be a deficiency, you do not need to have macrocytosis or anaemia to be B12 deficient. And supplementing will skew the results, so best test first and if already on supplements will need to interpret accordingly. Increased symptoms could be B12 D caused/affected so worth a look. Best wishes
so nice to have someone so educated on the site. If you could tell me a group of articles one one book to start learning more about what you were talking about. What would you suggest? I am a nurse anesthetist by training.
Firstly I should say I am not medically trained, just an interested patient. I have been reading and researching for the last 6 years, having been ill for much longer, and have made some significant improvements. But that doesn't mean that what I am doing or have done will be right for everyone else!
Vit B12 metabolism is complicated, poorly understood, and deficiency not diagnosed anything like as often as it should be. What constitutes 'deficiency' is not agreed and nor is treatment. A new group was set up in the UK in 2020 to try to answer some of the continuing mysteries, so it would be worth keeping an eye on what they are doing club-12.org/ One of the doctors involved said that in the UK B12 and nutrition has not been part of the medical school curriculum for the last 10 years, so it is hardly surprising that knowledge is dire, and the ramifications of that (which may be huge, both in terms of numbers and of potential severity) not appreciated. If one carbon metabolism (folate cycle and methionine cycle) is not working well, then DNA replication and integrity may be affected. sciencedirect.com/science/a...
It is just possible that underlying hiccups in those intricate cycles could be a trigger for autoimmunity and other chronic slow-developing conditions generally, not just for the B12 autoimmune, Pernicious Anaemia. B12 is a strongly genetic metabolism, with likely both mutations(many already found) and polymorphisms potentially involved. One carbon metabolism relies on most of the B vits, not just B12, being in the right places, right amounts, right vitamers - there are 4 for B12, 3 usual for folate (B9), 2 for B6 etc etc, plus cofactors like magnesium- and actually being able to be used. Many online bang on about MTHFR and the need for methyl (active) forms of vits, but some with polymorphisms (SNPs) cannot tolerate methyl forms at all (and may feel quite ill, even severely so), some will notice no difference as the 'normal' forms are perfectly useable by them, and others (like me) will benefit considerably. So one treatment as usual does not fit all. It is common to have a single SNP potentially reducing effectiveness slightly, but the knock-on effects downstream of that on other parts of the cycle (which may have more significant SNPs) are not often considered.
But I am getting ahead of myself here - I am sure you know far more than I do about most of this anyway, so apologies if I'm telling you things you already are aware of. There are many reasons for vit B12 depletion including a lack in the diet due to veganism or meat avoidance, simply due to age (once you get to c. age 50, gastric parietal cells become less efficient, so less stomach acid and less intrinsic factor produced - resulting in reduced ability to absorb B12 but also less efficient breakdown and assimilation of nutrients generally), depletion due to medications such as PPIs or metformin or methotrexate or gabapentin....., stomach surgery, other heath issues affecting parietal cells/acid such as hypothyroidism or coeliac, as well as pernicious anaemia and the gamut of genetic reasons, plus nitrous oxide use, be it recreational or medical. So one treatment will not fit all! More B12 in the cells is what is needed but how and which will vary, and it isn't only about the B12.
On the subject of nitrous, the UK Govt is banning unlawful possession from 8th November this year (2023), partly due to the neurological damage from B vitamin depletion, although they say it needs to be prolonged and heavy use. Others would disagree, in that some are already substantially more susceptible, so single use, like relatively short single anaesthetic, may cause significant damage. We have no way of knowing how much 'minor' damage is being done. In young people with a B12 rich diet and no underlying deficiency, the inactivated % may be replaced before anyone is aware, but in those that are older, with an undiagnosed mild or significant deficiency, and unable to replace promptly (if at all) the implications are far greater. Those with diagnosed deficiency are recommended (on the forums) to wear a medical bracelet to make sure that they are not given a nitrous based anaesthetic. We know that midwives suffer damage from long-term exposure and you can't help but wonder how much post-natal depression is added to by a B12 inactivation after gas and air. (Mum had a seizure following a dental local anaesthetic injection and had reacted badly to a general not long before, then absences, TIAs, dementia followed - but we know now that her B12 was low and her folate farcical, and given my inability to get rid of waste products in a timely fashion and multiple chemical sensitivity, I suspect she had some of the same issues with COMT and methylation. COMT is magnesium dependent and magnesium made a huge difference to me.)
The B12 being lowered was really clear to me in my own family, as we generally drop quite a bit even when still supplementing. All of the family members who had PA historically became significantly unwell and got a diagnosis having dropped off a cliff at a time of major stress - usually the chronic ill health or death of a partner. Even those with clear B12D symptoms but unable to get a diagnosis (those still around) drop hard with stress in the widest sense, including other ill-heath, eg covid.
Bookish, I believe I will call our family's good doctor who is a a DO (doctor of Osteopathic Medicine). Read him the tests suggested and go from there. It is so tempting to just skip more tests and office visits, but I think in his case this time, it is the wise thing to do. SOUNDS LIKE THESE TESTS WILL SHOW A LOT. Hopefully, I can report his test results on here soon for others to see as well.
Of the acetylcholinesterase inhibitors, rivastigmine has the least amount of effect on motor functions and can help for a while. I am with park_bear on clozapine and quetiapine. The former is a "black box" drug however, and needs regular blood work, but is more effective.
First, prayers for your father, mother, you and your entire family…
Man does not live by bread (or medicines) alone but by every word that proceeds out of the mouth of God. Matt 4:4, Luke 4:4
Pramipexole was the first med (with nothing else) I was prescribed at diagnosis - 44 years old and no other co-morbidities – was on it for about 9 months before calling it quits. For me the sleep attack in a meeting I was running did it, I knew I was “away” for 30 seconds or more… SO DEFIFITELY PRAMIPEXOLE.
I use Mucuna – natural form of L-dopa – so can expect all L-dopa side effects but at a lesser level, better of the evils… err…meds out there.
Magnesium helps with RLS, sleep and more – I will paste from my response from another thread here.
My one stop shop for neurology information – if there is a such a thing – is Dr Matthew CL Phillips (neurologist and clinical researcher from NZ) website metabolicneurologist.com/ – his emails/resources to PD patients in his 2018 RCT study on Keto vs standard diet. Here is one on oral dopaminergic meds – a quick but great read:
His PD presentation to junior neurologist colleagues and medical students (patients/families can digest this information as we experience the disease day by day): Pramipexole and mood disorders (and them disappearing after stopping the med) are mentioned at 37 minutes into the video…
His current research work is on brain cancer – yes, there is similarity in the causes between Parkinson’s/Alzheimer's/Cancer/Diabetes/Heart conditions. I follow his work on fasting and diet/eating closely and put them into practice – hoping to reverse my young onset PD.
I use a combination of Magnesium Glycinate and Magnesium L-Threonate – three times a day – morning (helps with stiffness during the day), around 2:00 pm (helps to fall asleep) and before bed (helps to stay asleep)… I tend not to forget as my body reminds me with cramps… If I wake up in the middle of the night with cramps though, in general, warm salt water with Magnesium citrate works in about half hour to ease cramps and fall back asleep. Magnesium citrate/Magnesium oxide - in excess, may give GI symptoms. Epsom baths may help too. Of course, dosage will vary for individuals - as I do OMAD/Keto, I may need more minerals.
Also use soft murmur audio on headset the phone in airplane mode… If awake despite that, I have found non-sleep-deep-rest useful… I have downloaded the episode below on phone… mostly at 10 mins point I am asleep. There are other videos on this channel with longer duration.
Mitochondria, I have a vague memory from my studying PD for years, that MAGNESIUM L-THREONATE should NOT be taken with PD if you take _______ for Parkinson's......? IDK
Mitochondri, read the article and copy/pasted some of it to share with parents. Video not working, but I think it's just a Cookies Computer problem I'll look at. I WANT TO READ YOUR BIBLE VERSE QUOTE TO DAD CONCERNING HIS QUESTION: "DAUGHTER, HOW CAN I LIVE LIKE THIS, WITH EVERYTHING I SEE, INCLUDING YOUR MOTHER, ALWAYS CHANGING APPEARANCE TO ME?" HE WILL CLING TO THIS.
Important question: Is he still in the hospital or is he home?
I ask this because when the elderly go into unfamiliar places for a while, like a hospital room, they get what is known as SUNDOWNER's syndrome. This presents with temporary disorientation of exteme sorts, but will rewsolve itself when he goes home. If he's already home and still disoriented, then thats not it and I dont know what else to tell you, sorry, friend.
Good luck, hope he gets better!
My dad had an ankle injury due to a gardening accident 20+ years ago, and that resulted in surgery but it still hurt him all this time. He recently underwent another surgery because it got so bad. Fortunately for him, he doesnt have PD, I do though. And he isnt disoriented but he has been getting a bit confused since several months ago, before this recent surgery.
Bass of Spades, he took the bare minimum after surgery and tapered off very fast with my mom guiding him. Only pain med he is taking is Tylenol and the PD-related depression medication Cymbalta is highly know for helping with pain.
His surgery was a few months ago and it was Day Surgery. Thankfully, the neuropathy in his feet has been a blessing in disguise, in that he has had little pain from the break. Even walked on it a few days because of this. It must just be enough neuropathy to cut pain, because he walks pretty well...although he falls sometimes. Only this one time did he injure himself (broken ankle) and he also can get up by himself.
We still believe that everything or SOMETHING about the surgery, be it the trauma of breaking the bone, whatever meds were used during and immediately following surgery, the time spent running here and there until surgery was scheduled one night for "first thing in the morning" (so no prep time for us to discuss with surgeon about his PD), being away from Mom for the first time, being with different people, getting scared of the reality of PD complications like breaking bones.... we believe it was triggered by this. Or at least brought on more suddenly and ferociously.
Well, cherishing the good times and making it through the bad, seeking God and peace, a better standard of living for all, I know it is all part of this life. And I am thankful for it, but happy to be on this site with this team, fighting to find the ANSWERS THAT ARE WAITING TO BE FOUND!
As hubby is currently in the midst of an episode, I don’t have great answers. But here’s what we do for safety during one.
1) stay calm. We start playing his relaxation and meditation tape
2) eat protein not carbs. Protein interferes with dopamine and counters the dopamine overdose
3) give a melotonin gummy or dissolvable pill. Puts him to sleep within 30 mins or so.
4) move him to a safe place. His lift chair in a reclined position or a bed with rails.
5) keep stressors and strangers out of his sight and earshot.
6) if safe, sometimes I give a magnesium oil leg massage
The meds he takes for cognitive impairment which help a bit with hallucinations are mementine and rivastigmine. Unfortunately we’ve had to significantly reduce dopamine therapies as this causes the hallucinations. If he’s not on an antidepressant or antipsychotic you could consider starting one. Or lithium orotate instead of the antidepressant. I’m still holding out hope to push the antipsychotic down the road a bit due to the high risks, but maybe we have to go there.
Oh I see Cymbalta? When did he start this…serotonin and dopamine need to be in balance …could be an issue? Though I would have expected it to help with hallucinations.
LeharLover62, I'm sorry about your husband. Does he have delusional thoughts in addition to visual hallucinations and ever get demanding because of being scared and concerned? Dad has had some visual stuff a few years, but has had insight that they are not seen by others. And not so very frequent or disturbing for sure! Post-surgery is when the disturbing stuff with delusions of things happening that aren't really happening began, and alongside this, the hallucinations became disturbing. Like seeing people and thinking these people are trying to kill a loved one, both these intertwined.
The Cymbalta seemed to help several things and was prescribed long before any of this started. Even Dad says he thinks the things he is taking are helping...just not enough right now for some reason. It is hard to know.
NOTED:
1-Relaxation audio
2-Melatonin gummy or dissolve to bring on sleep (*Does he awake mentally better?)
3-Eat Protein to counter the Dopamine Overdose, NOT carbs during psychosis spell
4-If safe, give Magnesium Oil Leg Massage (My daddy's BACK PAIN likes a massage with)
5-Move him to a Safe place: (Mom tries (us if there) and it is USUALLY safe. He at first tried to grab arm, and did with Mom couple times, but has seemed to overcome that now with some work. We have worked hard to convince him to JUST *KNOW or ACCEPT* THAT IT TRULY IS MOM AND WE WOULD NOT LIE TO HIM ABOUT IT, REGARDLESS OF HOW SHE APPEARS OR SEEMS. Mom also HAS DAD TO LOOK AT HER AND SHE GETS HER FACE UP CLOSE AND IF HE DOESN'T RESPOND, SHE CONTINUES VERY CALMING SAYING 'JUST LOOK AT ME'. Usually, not every time, but usually he responds and his eyes change to "knowing", and she asks "Who am I". Dad: "You are my wife and we've been married 59 years. I love you." SHE CALLS ONE OF US KIDS IF SHE NEEDS HELP FROM A PROLONGED OR VERY AGGITATED, YELLING EPISODE, BUT IT'S NOT QUITE OFTEN. We installed nice non-alarm (sound won't scare either parent) door locks that work both inside and out and that we alone have codes for and have hidden the keys that also still open them. He has his own recliner same as your husband.) I WILL ADD THE "UP CLOSE AND LONG STARE INTO FACE UNTIL RECOGNIZE", as well as NON-ALARM DOOR LOCKS to this list for new readers.
6-If safe, get face close to his if he doesn't recognize you, and ask him to just keep looking until he comes around and knows you.
7-Install non-alarm door locks on all doors (you and your loved ones will know code)
8-Possibly lower Dopamine (added after your next response)
9-Give HDT High Dose Thiamine (tricky to monitor, record, adjust, may be temporary help)
I can look back at my notes, but when the hallucinations first started a few years ago, I was able to get him functional again by lowering his dopamine meds and adding high dose thiamine. It worked for probably 6 months to a year before he worsened again. But it’s really tough to get the dosing right. And you have to go slow and keep track of every change.
Actually, this might help explain things for you. When hubbys hallucinating started, it was because we were moving, so I wasn’t working. and I made sure he got all doses of his meds effectively increasing his dopamine. This plus stress triggered them. So what if the stress of surgery PLUS maybe the hospital doses him more regularly or increased his dopamine???
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Is there a limit on Dopaboost intake? 
My dad is tired for most of the day. any suggestions?
Supplement recommendations
Protocol supports hwp.
Husband with PD hospitalised with uti infection
