This is very frustrating. Before starting any Parkinson meds this year, back pain (spinal stenosis but don't need surgery "do PT", insomnia and frequent urination (was told BPH) were my dad's only health issues. Healthy in every other aspect.
Now, 2 months in, he has hallucinations as a side effect affecting his sleep schedule. There's a lot of regret right now. He prefers dealing with all of the pain without the hallucinations like he has the past 5 years than what he's going through now. I think it was a mistake to start him on the meds - I don't think he needs more dopamine. I think this all started from being locked in during quarantine and the result of bad posture -> more back pain -> lost of appetite + malnutrition -> lack of exercise (he is a cyclist) -> lack of using his upper body -> muscle atrophy -> slow movements. And I really honestly think it's a misdiagnosis based on what's happening in the last couple months during the titration process. His psychiatrist of 4 years adamantly believes dad doesn't have Parkinsons and it's the pain that's causing everything. It's been a rollercoaster tryna find out what the hell is wrong. Now these hallucinations are a bigger nuisance than what we had to deal with.
Has anyone had hallucinations side effects from their meds and found a regimen that's helped ease or even eliminate them? We're in the process of reducing and discontinuing the Parkinson meds and it's like we're playing with his life right now. Textbook wise, Sinemet should be helping him and he SHOULD feel better on it alone, but he seems to do a lot worse on Sinemet alone (more pain, more stiffness, hallucinations continue) than when Mirapex was in the picture. So we switched it up. Now that we're a couple days into Mirapex alone, he seems to do better, with a little help of daily exercises, but hallucinations are still around.
How long does it take for these stupid Hallucinations side effects to go away??? I fear we've "popped" the Dopamine barrier and they'll stay forever...
Melaton 10mg has been added but it's not stable. Sometimes it lets him stay asleep for 2 hours, others just 1. Or even none bc the pain takes over. Seroquel 25mg was also added but it's too sedating and hallucinations still here. Didn't do anything. Also very wary about it as I read up it should only be prescribed for schizophrenia/ bipolar conditions. My dad is not on that side of the road.. this is all medication-induced! The only thing that seems to be helping him fall asleep right now is Percogesic (acetaminophen 325mg and diphenhydramine 12.5mg) but as I read up on diphenhydramine, it might not be best to use it everyday bc the body may become reliant on it.... So now what?
Idk. I'm venting as i do in my other posts... If you're still reading thank you ...
Sigh. Can patients even honestly really have a good night's sleep with hallucinations sticking around? Then as we all know, docs will just add more meds into the regimen & then the more zombie like the patient will become. It's such an upsetting way to resolve anything and it feels like we're an outlier here again - before we were outliers with the back pain (surgeons and all say no need for surgery, "iS tHe pAiN tHaT bAd?" (Yes we really had a neurologist say that to my dad before wtf) and now these hallucinations side effects.
I just want him to enjoy his retirement. We thought had had a chance when things were going well before reporting hallucinations, now it's like square one but worse bc of them.
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Visual hallucinations in the elderly associated with the use of levodopa
The fulltext is behind a paywall. It does confirm that hallucinations in the early stage Parkinson's patients with the use of levodopa is possible. The treatment was to reduce or eliminate levodopa which succeeded in most cases. Now that your dad is off levodopa hopefully his hallucinations will subside.
Spinal stenosis is a catch-all term for any narrowing of the spine that impinges upon nerves. If the stenosis is due to intervertebral disk troubles, fish oil can help. I recovered from my sciatica with it. Salmon is the best source of fish oil. Details here: tinyurl.com/27b3ahw7
Pumpkin seed oil is alleged to help with frequent urination. Every batch of pumpkin seed oil I have acquired either was rancid, or went rancid quickly. So now I just put a small handful of pumpkin seeds in my morning porridge. Based on my experience I do believe it helps. The other practice I follow to prevent nighttime bathroom trips is to avoid liquids for 2 hours before bedtime, except for what is needed to swallow pills.
In Parkinson's disease, it is recognised that visual hallucinations increase with the dose and duration of levodopa treatment,11 and that dopamine agonists are linked with higher rates of visual hallucinations."
I have been using 3 mg of Noltrexone,for me it helps with leg pain. I use 50 mg tablet, dissolve it in 50 milli liters of water and use a plastic syringe to draw 3 ml of solution to swallow. Has a slight bitter taste. Lots of info on Google. Mary
This is a definite possibility, and even some tick bites that give you Lyme disease do not always produce the famous target shaped red/white spot, and when a tick has finished feeding it will just simply back out and leave you, and they hide in hidden areas of your bodies so it is very possible that he has had a tick bite and not known it.
No, I don't think he has a tick bite.. it's not something we're aware of or can see on him. I would say there aren't any ticks where we live (& because he hadn't gone out much) but it might be possible since they're so small.The neurologist hadn't mentioned to get tested for Lyme Disease either. Just the usual "you have Parkinsons" from the visual cue slowness of walking - but that was exaserbated from the increased pain throughout these years. Who wants or actually can move really fast when their body is in pain? - is the point the psychiatrist says, who also says the increase of the pain is the result of the anxiety and depression from the pandemic, that the pandemic affects people in different ways - most people gained covid15 weight, while my dad lost 15 and that this is how the pandemic has affected him.
Diphenhydramine is a mild, benign product that does not even need any prescription, 25 mg to 50 mg should help put most people to sleep, it's just an antihistamine, and the talk and fears about dementia and other things are simply overblown where Benadryl is concerned, it's a lot of poppycock. At least that much is something you could rely on for sleeping. I've been taking it for chronic atopic (itchy) skin for more than 10 years, yes that's right, more than 10 years, back when it had to be prescribed and in much higher doses than are available today. I preferred its virtual twin Chlortrimeton until most manufacturers simply stopped making it because Benadryl had done a much better job of marketing itself, because chlortrimeton had less of a drowsiness effect for some people including me... But you can't really buy it anywhere now nobody will sell it as for the most part it is redundant. Combined, I have been on either chlortrimeton or Benadryl for more than 60 years with zero ill effects. 60. Years. Well I did have dry mouth. Sorry that's true. So you have to brush your teeth more. In the 1960s chlortrimeton and Benadryl both had to be prescribed. Today it's considered really benign. A lot of people hype it's risks for older people, but I think that only occurs with people who have dementia or at high risk for it. Not parkinson's, actual dementia. Taking your word for it, he has no dementia.
Thank you for your reassurance that taking Diphenhydramine is okay as a sleep aid. I too thought it might be okay since it's not a prescription until I started reading about the risks on the elderly. Glad to hear that you haven't had any issues with it!
If there's a way to actually, factually test for dementia that would helpful right now.
Yes there are lots of ways to test for dementia (and describe the various aspects of a person's specific expressions of) dementia. Psychiatrists and psychologists are the best at digging those out... You need both psychiatrist and psychologist, but you really badly need psychologists because those are the ones who specialize in formal reliable valid assessment tools and measures they're the ones who specialize in doing research and developing tests in the area of dimension, perception, mental experience. Very helpful for the psychologist to have experience and training in neuropsychology and psychiatry as well as overall psychological assessment using formal testing measures and medical history. Then what they do is hand that stuff, reports they're findings over to psychiatrists. And you (that is, your dad and you if you are the decision maker) should be able to obtain copies and have them fully explained. In the end you need both the inputs from psychiatrist and psychologists and then you need to be informed of what they are, including written assessment and evaluation reports so that you can have them as a reference manual and from their track changes over time as your dad's condition moves through time. Then anybody else involve doing treatment and planning needs to see them as well, including PT, OT, general or family medicine, internal medicine, whoever becomes part of the picture needs to have those evaluations and read them.
So I hear two things, or back pain and hallucinations. Is that correct, and did their history coincide or is it more complex relationship than that and did it get further complicated by the introduction of medications? Has all that gotten sorted out yet? You also mentioned that your psychiatrist believes you don't have (I mean your dad) Parkinson's. Well is this all been sorted out yet?I happen to get the hallucinations too, actually more nightmares and hallucinations, hallucinations while you were asleep probably what we would call nightmares, so did you mean to say that the hallucinations are while he is awake? That would be hallucinating. If it's during sleep that would be dreaming or nightmares.
In me, they arose approximately four or five years ago and have gotten gradually a bit more frequent and a bit more intense, to the point that they're really nightmares. Caused by my medication I think, but this sort of thing definitely happens with parkinson's, so I do think it's very important to be able to sort out what do you have, Parkinson's with back pain, or not parkinson's?
Also, how certain are you that he doesn't actually need surgery for his spinal stenosis? Very confident? Got a second opinion on that?
However I have PD and there's no doubt, but you said your psychiatrist is convinced that your dad does not have PD. Is that what you really meant to say, and could the psychiatrist be correct? If the psychiatrist is correct, then either there is some other diagnosis involved that he hasn't yet had diagnosed, or something is missing from the picture.
Generally a quick way to test a simple hypothesis of "it's the medicine" that is causing the problem is to stop the medication and see if the problem thought to be caused by the medication also stops. That's called a "reversal." Then you restart the medications again and if the hallucinations reappear then you at least have a confirmation of that particular factor, the medication. If what you have shared with us is complete and true, it shouldn't be a big deal to test at all.
Now if you are implying that he does not have Parkinson's and that the medication is given in error and thus causing symptoms, I'm not sure about that because I'm not sure about what mirapex will do by itself in a normally healthy male as you describe your dad to be. Well, to be of help we have to assume that when you say your dad has few problems except for the stenosis, that what you say is true. I would tend to think though that it could be likely that he has a condition on his lumbar spinal area, it's very common to develop Spurs and stiffened or dried out or thinned out or herniated discs as well as the stenosis.
But there can be three or four causes of sacroilial or lumbar or lower lumbar pain, perhaps there is more than one condition that he has down there. ???
Now you also mentioned acetaminophen. That chemical is a good way to ruin your kidneys. I can't think of a serious benefit of acetaminophen that I would consider worth the negative trade-offs, especially the high potential for renal damage. I much prefer Aleve, starting right away with two 200 mg pills to see what it will do.
Now I happen to take duloxetine and I have taken it for almost 9 years. It came along the same time that the hallucinations did so there is some question as to whether it contributes to the hallucinations (actually nightmares) because duloxetine is a snri medication, which means it boosts the effect of your own adrenaline and it makes sleeping difficult and getting rested difficult. However, my hallucinations and nightmares have subsided quite well when I take about a quarter to a half a tab of 0.5 mg clonazepam. Works pretty well, although I am tired over the next morning, and that is a feature of Klonopin so if you don't want that then you should stick with the Benadryl or take the smaller dose the 0.125 to 0.25 milligram of clonazepam, and that way it doesn't carry over a lot into the next day. So I would test it out to see.
I recommend reading that article that Bosco Jean put up. It's very interesting. Here's a quote from the abstract: "While dopaminergic medications have long been associated with PD psychosis, a clear causal link has not been established, and other neurotransmitter systems, particularly noradrenaline, serotonin, and acetylcholine, are implicated and important." That said, any of the first, second, and third generation antipsychotics and neuroleptics can indeed cause hallucinations, and some people have a genetic makeup that makes them more sensitive to that side effect, because dopamine is like Goldilocks and the three bears, it functions in a range and too little or too much can cause problems including tremors and hallucinations and muscle spasms. Every individual responds uniquely though and that's also part of the problem because each person has a certain package of genetic mutations that naturally occur and which makes them more or less subject to symptoms that other people are not as subject to. So it's a matter of going through a bit of a slow and complex clinical discovery process with your prescribers. It can be very painstaking and a lot of it can be hit or miss, that's basically what "clinical" means, the context is that everybody has an individual idiosyncratic makeup to some extent so you really just have to go through it, it may be the medication but then it may be just simply the dose of the medication. Variables take time to sort through.
Now if you have managed to get through all the verbiage above, the bottom line is much simpler: yes Sinemet is known to cause the symptoms your dad is having. It can happen whether the person has Parkinson's or not.
Here's an idea: ask your psychiatrist if he or she is old enough to remember what they used to give when somebody had a bad reaction to a medication that messed with dopamine (including back when they didn't know it was messing with dopamine because they didn't know enough about dopamine back then): to settle down the nasty effects, they used something called Cogentin (benztropine) to counter the effects.
Thank you. Thank you for sharing a possible way out of this. I'm glad to hear that your hallucinations have subsided quite well taking Clonazepam. (Are you still taking the Duloxetine now?) My dad was on Clonazepam 0.5mg -> 1mg for 4 years (without any side effects) before it was discontinued by the PT Rehab center the same week starting the Parkinson meds. It helped calm him down which invertly helped lessen the back pain some times. I will try and see if the Psychiatrist agrees to try this approach.
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Stopping the medication (Sinemet) - I believe this is the move too. It's 25/100mg - is that a small dose? He's been taking 3x a day for 4 months. Much like the Diphenhydramine, there are risk statements about stopping medication on our own, would it be ok? I think it would be the same as going to an appointment and the doc telling us to do the same anyway. Heck, stopping both Parkinsons meds to get his sanity back and address the pain directly again would be great.
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No, dad is not sleeping while hallucinating. He gets up more frequently to pee if he has pain in the middle of the night - this is the norm since 2019. When that happens, won't be able to fall asleep again so he paces around in the living room. Now in the past 2 months, when he gets up to go to the bathroom, he mentions seeing the hallucinations — a group of people in the living room, sometimes in his bed when he comes back from the bathroom, etc. He is not heavily sedated. He's taking Tamsulosin 0.4mg since 2019 which has drowsiness but no other negative side effects. Sometimes the drowsiness works, but more than half of the time the pain takes over and it'll keep him awake so he'll be up from 2am til the morning.. not knowing what to do .. stuck in a cycle and now seeing the hallucinations def doesn't help the insomnia.
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Yes, every individual responds to meds differently which also makes me question how does one actually know someone's dopamine levels are low instead of "take Levodopa. If your mobility improves that means it's working." If there were factual numbers shown then sure, but clearly this is messing a person's system and the same insanity loop.
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Whether this is Back + neck pain, stenosis, no Parkinsons (no sides of dementia) or is everything stemming from Parkinsons? Hm. That's the chicken and egg question right now. However, if it's the latter, the gold standard Levodopa treatment should be helping dad improve...not worse. Hallucinations also only started after the Levodopa therapy.
Since he was on clonazepam successfully in the past I think I would ask the doctor to comment and why it's so important to avoid that medication now, especially low dose of it, during this discovery phase. And also asking whether it still has a defensible role given the proportion of things. Nothing has to be perfect and something that has worked before should have some legitimate justification for not using it now... And by the way, the patient should also be allowed and willing to participate in the decision-making process, the values and trade-offs and judgment are not for one party alone to determine, especially when the patient bears the brunt of all the decision making, including the negatives or trade-offs or costs, sometimes there has to be a sense of proportion involved and somebody representing the final decision and set of values in determining... I've always thought that since I'm the patient, I can and should play, and even assert, a significant role in deciding just exactly when putting something in my body and taking it out is appropriate and worth it.
He does sound medically overstimulated and medicinally agitated. And over time the fatigue and stress can add and exacerbate that stimulation, so it shouldn't be allowed to continue by itself.
Makes me wonder a bit with the half-life of that Sinemet is and how much and how quickly it is metabolized and what it's interactions are. The doctor should have prepared you for all this as well as discussed with you when things get to be to the point where you need an emergency plan, or the doctor needs one. And it should take a minute or two to familiarize you with the concepts of pharmacokinetics and pharmacodynamics, one has to do with how the body absorbs and utilizes the medication, and the other has to do with how the body gets rid of the medication. These are important things to discuss and should not be left out. Patience should be made where and informed about these things regarding specific meds, also interactions should be talked about.
Okay let me answer your two questions first. On whether cinnamon dose 25/100 is high, I expertise in that one is limited. So somebody else should answer. On the duloxetine, I take duloxetine for refractory depression. But some prescribers prescribe it to help with pain management as well. It is responsible for my lessened ability to sleep because it's basically meth that your body produces to keep your brain and body aroused to the necessary level, adrenaline and noradrenaline are involved in your body's natural fight or flight response, stimulants. But duloxetine is mainly for depression that does not respond well to ssris, MAO inhibitors, tricyclics, cognitive treatments and therapies, or tetracyclic antidepressants. What it does is it partially blocks or delays the reuptake of adrenaline (now called epinephrine) and noradrenaline (now called norepinephrine), the natural stimulant your body produces, they are basically a form of amphetamine your brain produces to keep your brain alert. Unless he has depression it's probably not for your dad. Duloxetine is a SNRI, "serotonin norepinephrine reuptake inhibitor."
No, since your dad's hallucinations are during waking, abrupt onset, that is a definite concern and most likely do to the addition of Parkinson's meds to his regime, at least the specific meds following which he developed the hallucinations. So this is a more concerning development and should be taken very seriously by your psychiatrist and it is also important that your psychiatrist understand that you are taking this seriously. somehow either get the doctor to believe, or the doctor encourages them, maybe unintentionally, to believe, as if the doctor is some sort of God Shaman... Because really that is a heavy burden to stick on the psychiatrist and not everybody handles very comfortably. The idea is to have more complete communication with the doctor on all the ups and downs good and bads potential benefits and trade-offs, and whether we are at the taking a shot in the dark if we use this med, this med could cause problems and this is what they would be like, and completely discussing these meds and the specific med under question that he's wanting to use before it actually gets put into dad's body. You kind of have to be like a thorough and careful customer.
Something also you should be telling your psychiatrist is that you seem to be perceiving some really mixed signals and it is "very important" to get a decent "thorough differential."
If theres reliable reason to think he probably hasn't got PD then it's probably worth starting with a DAT scan to resolve categorically whether he has Parkinsons before doing anything else.
My husband did experience hallucinations after increasing an Amantadine tablet. Neuro said add one more pill so 3 instead of 2 and hallucinations happened within a couple of days in the night. One less and they all disappeared.
Doesn’t have them now and keeps to low meds a slight amount increase can put you over that threshold.
He’s written a poem about it, I may have posted it here so I ll try and find it.
Thank you for sharing. It's a lovely poem. So glad the hallucinations have disappeared for him. Do you remember how soon they disappeared after reducing the med back to 2?
Within a few days I think when he realised that it was the only change of meds that he d made. He had experienced a few, only at night before this, it’s difficult to remember exactly when, but they had stopped a long time ago and then reappeared with the extra Amantadine.
”I think this all started from being locked in during quarantine and the result of bad posture -> more back pain -> lost of appetite + malnutrition -> lack of exercise (he is a cyclist) -> lack of using his upper body -> muscle atrophy -> slow movements”
I think this is actually the way many cases start or are found out. For my hubby it was being put on mirtazapine because SSRIs had made him suicidal. That made him sleepy so he wouldn’t get up or move etc and as you say it led to lack of exercise, muscle atrophy, slow movements …
Too much Levodopa makes my hubby behave like he is schizophrenic which makes sense really as mania Is caused by high dopamine levels.
I know how you feel like you are playing with his life. I felt like that too but it is also what doctors do when they try things out on him. The difference is you can see him more often and watch responses so you probably have a better idea what’s making him worse or better than they do.
Hubby now has a stable regime on much less levodopa than they wanted him on and has been really happy and well for the last 6 months now after a hellish few months at the end of last year. Keep persisting and your slow reduction of meds is a sensible trial. Hopefully you should reach his ideal dose then he might be well on it for a good long while.
I listened to this recently on posture and pain. It might be helpful
"I know how you feel like you are playing with his life. I felt like that too but it is also what doctors do when they try things out on him. The difference is you can see him more often and watch responses so you probably have a better idea what’s making him worse or better than they do."
Yes, Thank you 🙏 I have that exact thought — the docs are only adjusting the meds at every follow up appointment (which is very annoying bc we travel over 1+ hr to their office because they HAVE to see the patient in person in order to adjust the meds, yet we only get 5mins of and off we go with "new prescription"). I wish we hadn't listened to the last one.
My dad was verbally suicidal before his first ER visit for the back pain in 2019. This resulted in the hospital prescribing Clonazepam 0.5mg which did calm him down and he had no side effects from it. Then the psychiatrist continued the script for the past 4 years until the rehab center (was there for PT) discontinued it earlier this year 2023 when the Parkinsons meds were started.
Dad lost 11lbs in 3 weeks ever since the discontinuation of Mirapex in the beginning of the month while the back + neck increased + sudden leg swelling. This is all while he's only taking Sinemet 25/100mg 3x a day, Gabapentin 200mg at night for sleep, Seroquel 25mg for sleep + hallucinations. He lost 3lbs the first week into the process. We reported that but they told us to continue the process the textbook way.. now down 11lbs in 1 month... that's a serious concern and proof that discontinuing Mirapex + adding gabapentin+ Seroquel was not the right move (or at least solely relying on Sinemet was not the right move and somehow(?) he is not responding to the extra dopamine as he should be (or anymore?) which is why I don't think he needs help in the dopamine aspect.
Now that Mirapex is added back (still tryna find the right balance), Sinemet is reduced down to half a tablet of 25/100mg, I'm not sure if it's doing him much of anything. He is still in pain so he is still moving slow. Seroquel has been removed bc he turns to a zombie at night compared to the self-movable person in the day. The good out of the reduced Sinemet is that my dad notices his dad is not as constricted(?) - he describes it as "my head doesn't feel as wrapped up anymore. It used to feel like there was a lid covering my head."- from that it sounded like there was too much dopamine and no way for them to get out. When we tried to do half doses of Sinemet throughout the day to equal 2 pills of 25/100mg, he would have immediate stiffness and I felt it in his legs. Immediate and he would be miserable. Then times where it's just Mirapex, he doesn't have that. He's good - as long as posture is considered and we'll also be able to get some light exercise in during that time.
The leg swelling is now reduced by taking Ibuprofen. It hasn't been exaserbated by the Mirapex even though it's a common side effect. So far he's had 3 good days this week when his dose are Mirapex 3x a day (0.125) and 0.5 Sinemet. The others are eh ...bc his sleep schedule is messed up but hallucinations still around which makes me think maybe we should start fresh and discontinue both and deal with the pain + posture.
Chicken or the egg — which came first is the main question right now. He's had the back and neck pain for a long time. When dad is in pain he moves slow and bc of this when neurologists seems him, they think PD. But we saw 4 and 2 of them has seen him in his good times and says he doesn't have PD. Psych and Urologist has been with us before any of the affects of lockdown and they're the only two that said to get the pain checked out, rather than it being a Neuro/movement issue.
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"Hubby now has a stable regime on much less levodopa than they wanted him on and has been really happy and well for the last 6 months now after a hellish few months at the end of last year. Keep persisting and your slow reduction of meds is a sensible trial. Hopefully you should reach his ideal dose then he might be well on it for a good long while."
I am hoping for this too. Thank you so much for your support. And thank you again for sharing you and your hubby's experience. How did the Neuro react when you shared your hubby actually needed less Levodopa? Were they receptive of the change or did they push for more? I hope we can get to a stable regimen as soon as possible and that MAYBE he can start to enjoy his retirement... And actually live life again. This has been a long rollercoaster of insanity where everyone tells us to do the same thing hoping for a different result.
they always push for more. I have explained every time we see them that whenever he takes a full dose of anything he gets all the listed side effects. He does very well on 1/4 or 1/2 doses of things. Last time when he said he was feeling really good to the nurse she said can I give you this new pill! He said no. But she wrote to his GP and said he has agreed to go on this new pill if he deteriorates. You’d think they are paid commission for each new medication they add!
Did the increased pain coincide with the withdrawal of clonazapam? If he took it 4 years that might have affected him stopping suddenly.
How far apart was he taking the 1/2 sinemets? We have found around 3 hours is good. Any longer and he would get stiffness. There is a stiffness and rigidity he associates with too much that happens 90 minutes after a dose. Then another type of stiffness and freezing when it wears out at about 3 hours.
If he is getting stiffness immediately after taking a dose it might be that it is because it takes over 1/2 hour for it to start to work. The stiffness is caused by the running out of the previous dose before the the next one starts working, not the taking of the next dose. In other words you might need to bring the doses further forward until the next dose starts to work before the previous one wears off. It might help taking 2 doses only 1-2 hours apart first thing in the morning then sets up 2 separate peaks of levodopa in the blood, with the second filling in the gap of the first and getting the baseline levels in the blood a bit higher for the next doses to build on.
My husband takes 1 x 0.5 mg clonazapam split 1/4, 1/4, then 1/2 before bed.
Perhaps you could ask to have clonazapam back at this dose and back out some of the other drugs slowly.
First of all, your father is very fortunate to have a daughter like you. I have been dealing with Parkinsons now for 11 yrs., but I was miss diagnosed for a good 10 yrs. prior. As you and your father are learning over time, Parkinson's is not a one size fits all. What I mean is the way it manifests itself can be very different from, person to person. The ride if you will, can be not so bad for some and really aggressive and very intense for others. I am obviously not a doctor, so I will be speaking out of my experience only. Mirapex, I would recommend that no one use it, if the dose is very small and the patient is sure that they are getting very good benefit, then continue on otherwise the Side effects can be Very bad. Not sleeping seams to come with the disease for many of us, the only medication that has helped me for sleep is Clonazepam. I have tried everything from herbal supplements, and every type of sleep aid, this one works. Nighttime hallucinations (while sleeping) and not being able to get to sleep. I found that any of the slow release/extended-release Carbidopa and levodopa, keep me from going to sleep, it was several months before my body adapted to the medication.
If I understood correctly, you stated that a psychiatrist said that your dad didn't have Parkinson's. Well either your dad is seeing a horrible Neurologist, or the Psychiatrist is an idiot, get rid of one of them!
Parkinson's cause deterioration of the brain and spinal cord (sorry about more good news)
I have had major lumbar spine surgery 2 steel rods 8 large screws, 4 level fusion, the surgery wrecked me, but I was able to walk again after the surgery. The surgery was an emergency surgery, unfortunately they missed some areas. Meaning that I still live in chronic pain.
The current MRI, the Nero surgeon says there's some issues here, but it isn't that bad. Parkinsons, I believe plays are very large roll in intensifying the pain experience for those of us with Parkinson's. You know your dad is a tough and strong man, but Parkinson's can be a destroyer of the strongest of men and women.
Really encourage your dad to start to exercise doing anything he can, it has countless benefits and will be very helpful with all the above. My advice for your dad in this situation is to find a really Good Nero surgeon, who uses modern cutting-edge techniques, arthroscopic minimal invasive surgery and clean up the areas of Stenosis, it could be life changing for your dad.
I wish your dad and you a loving daughter all the best.
Very right about the exercise. And staying for long periods without moving put stress on vulnerable points in your frame, cuts off circulation too. Try to counter these by not letting things get too long in anyone position or anything that is a little bit off balance, like for instance when I sit on the couch or recline left on the couch which I love to do puts pressure on my left hip and butt region, strains muscles and also cuts off circulation both leaving me with some pain... But the pain comes on the right side, not the left side, even though I'm leaning on the left side a little bit more than the right. When I get that pain it's my signal to restore circulation by shifting my weight on another angle and relieving the pressure on whatever large blood vessels are in that region getting pressed too. So break it up if you can every so often, move around, change positions.
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