My companion (& myself) believes he has Parkinson's, his list of atypical symptoms fit. What's next?

I'm new here, though have known people with this (Parkinson's) earlier in my lifetime. My beloved (and I) have noticed him recently (in the last 1-2 months) enduring intermittent tremors of both hands, some leg-jerks, when on the couch relaxing. He also has started turning his head somewhat, (in a jerking fashion) when they get more noticeable. He has had some intermittent problems getting up from a chair, or the couch. He has had several hallucinatory episodes (albeit very minor, as to length and type) that have rattled him. (1-2). His sleep is not compromised yet - thank goodness. Do we go to a doctor and give the doctor a chance for a review? -- and then try natural treatments for comfort with a holistic practitioner or naturopath? ... CBD oil is one we'd like to do. We have been zealously educating ourselves on these aspects - he is nervous on seeing a 'regular' pill-pushing practitioner. Pills that cause worse problems (down the line) frighten him (& myself) for good reason. Thank you, if anyone has any advice as to how to continue.

46 Replies

  • First please go to a doctor and find out what is causing his symptoms. Dose not sound like Parkinson's (PD) to me. hallucinatory episodes to my knowledge is not part of PD but can be a side effect of PD drugs. Good luck.


    You are a victim of misinformation. PD drugs do not have long term lasting side effects. PWP just get to a point where PD drugs no longer work for them. I have been taking PD meds for 11 years with no lasting side effects. I have suffered side effects but the benefits far out weight the the side effects. And after that many years i live a full life. I am 63.

    Please do not insult the many fine people who have dedicated their life to helping others.

    "'regular' pill-pushing practitioner" is a insult and has no place here.

    Bailey review as many post as you can they will help.

  • I certainly did not wish to offend anyone, on the thread with my 'anti-pill pushing doctor' comment, as no one here in the household is under any doctor's care currently requiring any prescriptions. He has siblings (whose health unfortunately has not been "good" per their outcomes & individual scenarios in the mainstream medical scheme) unfortunately -- that likely 'colors' our opinions. We've been very healthy, been rather lucky in that way so far -- this is quite a scenario for him to deal with. We eat many natural foods: prepare homemade yogurt, beef & chicken broths, bake our own bread, do canning, etc., we eat very little processed food (if any). He intends to continue his food-oriented hobbies, as long as he can = as he was a trained chef, baker and cook during most of his working life. He understands how nutrition is 'key' in some illness out there versus just taking 'a synthetic tablet' and hoping for the best - which the medical establishment is prone to do more often than not.

  • ditto: Dose not sound like Parkinson's (PD) to me.

  • Hi RoyProp;

    I have classic PD yet Levodopa and its natural form Mucuna Pruriense causes my symptoms to get WORSE ! I am puzzled.

    I read that you wrote Levodopa has no value for you. Did it ever work for you??

  • no

  • STRANGE, because Levodopa is also diagnostic, Positive response = PD confirmation.

    So the 2 of us are an exception it seems.

    Potentiation of existing dopamine through MAOi B (Selegiline) made more sense to me, tried it and it improved the tremor, but after 1.5 months of it seems the tremor is back.

    Scary to be burning drugs that fast, just 1 year after diagnosis.

  • Selegiline has only a mild effect but it seems your disease has progressed to the stage where you need more than selegiline.

  • My neuro thinks Selegiline does nothing.

    I added Amantadine and that is not helping either.

    WHY is Levodopa making things worse though ? Having no effect is one thing, but worsening ?

    I thought Parkinson PLUS or other Parkinson like illness but loss of smell is differential diagnosis for PD and I have that.

    What is left then, exercise and I am not committed to that at this point. That's why I am looking into nutrients and neutraceuticals, but feels like a waste of time. 200 years since James Parkinson put PD on the books and the choices for treatment are very poor.

  • Our brains can make meds not work or it can make placebos work like meds. Lot of power it has.

  • Yep, despite what people write our choices are restricted. I think the best thing we can do is become expert in ourown version of PD and work out how to maximise the good times.

    When you say levadopa/carbidopa doesnt work what does that mean, how long you tried it, what dose etc. As i heard on a video posted here recently, when people say that they often havent taken enough.

    Yes my tremors get worse when i take a dose and remain like that for 3/4 hr when hurrah, it finally kicks in and i am tremor free for about 2 hrs then the cycle startes over.

    There is alot to learn about how meds work in our body and what we can do to make them more effective. In the end we are the only ones that really can really monitor this. The neuro brings their knowledge and joins it with our observations - thats my ideal at least.

  • I tried Madopar which is Levodopa/Benzerazide 200/50. Half of that does nothing but worsen the tremor. Then I tried the whole pill, same worsens the tremor NO kick in. Takes days to wash out the drug. Then tremor gets better !

    This is just strange.

    One time I got creative and took the whole pill 200/50 on empty stomach early AM, AND also 2 caps of Mucuna Pruriense 15% Levodopa, equivelant to 2x60mgs Levodopa.

    In less than an hour I was wishing I was dead. A horrendous nausea and puking lasted all day !

    So much for Levodopa I thought. Then I turned to Selegiline and Amantadine that helped a lot for 1.5 months, then back to no effect and tremors.

    Now thinking I should get off everything even the Neutraceuticals to see how much worse I get.

  • Well you have started on very high individual doses, that will give your neurons a shock. It seems like playing around with meds when you take such large doses as 320mg levadopa in one go! No wonder you were sick? What was your reasoning behind that?

    Amantadine is one of the older drugs though Michael Fox takes it now for dyskenesia.

    Selegiline metabolises into an amphetamine so it can make you feel good, my experience and others have said the same (it worked for J Peppers depression) but otherwise its not much use on its own except very early on.

    You say those drugs were only effective for 1.5 months ie 6 wks, is that correct?

  • Less Levodopa does nothing, more causes nausea, can not win.

    Selegiline metabolizes to Levo Amphetamine, not the active stimulant Dextro Amphetamine. Wish it gave me an antidepressant effect. It does not.

    Thinking of adding the reversible MAOi A Moclobemide (Aurorix) for depression but read warnings it could cause the MAOi hypertensive crisis (aka as cheese effect) taken with Selegiline

    Selegiline takes weeks to clear from the system.

  • oh yea, 6 weeks that's all I get, wth is going on beats me, "atypical PD" :P

  • Man that was a huge dose. My dr recommends very gradual increase like by 1/4 pill per week since I get nausea. Lid I took domperidone with the ld to stop nausea initially . A dose the size you took would have had me out cold

  • When I was taking sinemet I was also extremely nauseated. The doc prescribed an extra 25 mg of carbidopa and it stopped the nausea cold.

  • Thanks Hilo I think you may well be right for me too, my wife keeps gently suggesting I need to dive in and try again to up my dose from 3 tid 25/100. Last time felt so bad not keen yet but would love to lose the bradykenesia ...

  • I agree that we are the only ones that really can monitor our bodies and PD. Our caregivers should encourage us to participate in exercise and help with using the internet if we aren't comfortable with it. There's so much to learn about PD on the internet and from others who have it. It's our disease. My husband is great. I am no trouble to him yet though because I am so proactive.

  • You may be resistant to exercise now but if you can get onto something you enjoy and gradually increase the body does provide you with rewards

  • Levadopa has yet to help alleviate my symptoms either.

  • QNTT, how were you diagnosed? Did you have a DaTscan?

  • I am very curious to have a DatScan but, sounds like a hard test, let alone pricey without insurance, that is my case.

    My worse fear is it will trigger a claustrophobia attack, I had an incident several years ago with an MRI, was not able to complete the imaging !

    The Dx , which the neurologist had no problem giving me in writing, was done with the traditional neurological exam.

    One sided, tremor and cog wheel rigidity, the right tremor frequency, and he also told me he knew it was PD as I first walked into his office. He is very experienced with PD.

    Of course he waited to complete the full exam before announcing to me that it was PD.

  • I'm with you. I'm inclined to give a lot of credence to an experienced neuro.

  • While my neurologist is very experienced with PD, he is also very old fashioned and very closed minded on nutrition and supplements !

    Ritalin has worked for years for my depression, having failed all other antidepressants. He will not Rx it and said that I can take it "on my own" if I wanted ! That pissed me off to not want to try another neurologist. It get old to have to "train" , - Doctor House MD's know it alls.

    He also does not think exercise "does much" .

    I am finding out here, that exercise can even be an effective monotherapy, but a lifetime of depression, as it got even worse with PD now, is leading me to inactivity.

  • I applaud your decision.

  • Well perhaps you can at least try out some freeform or climb-the-stairs exercise, won't you?

  • My husband didn't respond to Levodopa at first, which delayed his diagnosis for several very painful scary years. They just didn't give him enough for long enough to do a proper trial. Not sure why they don't just blast you with a good dose to see if patients get immediate relief, just to confirm a diagnosis. Years later I finally see the wearing off when he is due for his dose. In Canada they don't bother with datscans or petscans typically unless you are part of a funded study. So no concrete way to diagnose other than response to Levodopa.

  • I want to be clear, i'm not advocating this, but i'm trying to use levodopa pills to coax natural dopamine by using low dose for a spell, 1/2 pills twice, then 1 pill twice to kick start system.

    I am using my supplements at the moment, but I thought levodopa pills were positive effect.

    I also think my testing out of antistax, an otc was positive..don't know active ingredient?!? spasms when I stopped and started supplements in response.

  • I am sorry to tell you that, but the experiment you are trying can only have placebo effect.

    Logic requires that.

    Dopamine Replacement Therapy as a mean to augment endogenous dopamine production can only fail. Yes even low dose.

    Matter of fact ANY hormonal / neurotransmitter replacement therapy AS a MEANS to restore endogenous biochemistry is gonna fail, especially in PD that we have DA neuronal death or atrophy at the least.

    IF you want to restore ENDOGENOUS DA production, the best means we have at the moment is inhibition of Monoamine Oxidase type B, MAOi B.

  • thanks for input, but can you tell me more about reasoning behind recommended substance, why it should work, how and where one can et it.

  • You are talking about Selegiline the older and cheaper MAO B inhibitor ?

    IT should be cheap to get online, are you now or have you ever used Selegiline or Rasagiline ?

    Read the wiki piece on MAOi its pretty good.

  • tks for link.....would never volunteer for this intervention. a good way to do away wit someone, uh oh... a new chemical threat. feed a marinated food to someone after slipping then an maoi and viens protest.

    you have integrated conventional thought that pd is stricktly a dependence on dopamine as the cause of pd, i'm less certain..

    our brains seem to be traffic control/delivery service for us..... i'm suspecting problem is in the body proper.

    something is preventing delivery of dopamine which controls muscles..... what are we witout movements.... slugs, sloths maybe. primitive anyway.

    dopaminergic system is so dominant, pervasive. took millennia to evolve according to modern thought. it's involved, but has to be simple.

  • I thought that the jury was still out on whether hallucinations are part of progressive PD or caused by drugs....or possible LBD.

  • Did the hallucinations possibly happen at night ? REM sleep disorder - often associated in PD can cause them. (No medications involved.) Usually it is after waking in the middle of the night and then sitting or standing up - eyes wide open and seeing something that no one else can see.

  • He has not said to me (at all) when the one, or two hallucinatory episodes occurred whether during the day, or nighttime. But he did state the event came and went; he knew it was not 'real', as to what he saw.

    As far as I know he has not had any others. He has reported to me on an occasion -- opening bottles of his vitamin supplements we both use, one episode a while ago he spilled the contents on the counter - and was amazed he had such a problem unscrewing the cap, in order to pour just 1 of them into his palm. They went everywhere (as to those spilled).

    He has not had too many headaches - but feeling a little nauseous 6-28-2017 was his complaint. It's been ungodly hot here in AZ where we live (thankfully he loves water (and drinks quite a bit with some ice also)) to cool off, depending how warm he gets. He has told me all his life (he was born in 1951, so he's 66 -- he claims has rarely dreamt, or rather he never 'remembers' his dreams) -- Indeed -- he's a good snorer -- tends to fall asleep generally quickly, when tired. Movies & book reading put him out 'almost immediately' in the middle of evening.

  • Mundomom

    There is a lot of opinion here on meds which I would ignore for now.

    This may or may not be PD but seems neurological and perhaps serious. Find a neurologist TODAY who specializes in movement disorders including PD. Let him diagnose and prescribe. This may include an MRI or CAT scan at least to rule out other possibilities.

  • The bottom line here is that, as much as people, such as myself, with PD, who want to help (which is fine to express an opinion, I suppose), I would think that going to a professional movement disorders specialist would be of prime importance, in determining the cause of your companion's symptom's. A well qualified, experienced neurologist, specializing in movement disorders, would be my advice, for a start, in helping solve your companion's distressing symptom's. Best to you, and keep us informed on how things are going Mundomom!

  • Go to a movement disorder neurologist. Does not sound like beginning Parkinsons but can be something far more serious. No use speculating for surmising.

  • Maybe what mundomom means by a pill-pushing practitioner is one who restricts treatment to pharmaceuticals and looks askance at other supports -- nutrition, exercise, etc. I was taking sinemet and amantidine and the crummy side effects -- dyskinesia in my lower right leg -- was not worth with the benefits (mitigating my tremor). It hurt from all the twisting and turning, I couldn't walk, I certainly couldn't box. :-(

    I scrapped the pharmaceuticals and started taking mucuna pruriens along with EGCG. So far so good! Who knows how long it will last? I am not averse to any treatment that works for a PwP, whether pharmaceutical or natural.

  • I certainly did not wish to offend anyone, on the thread with my 'anti-pill pushing doctor' comment, as no one here in the household is under any doctor's care currently requiring any prescriptions. He has siblings (whose health unfortunately has not been good per their scenarios in the mainstream medical scheme) that likely colors our opinions. We've been very healthy, been rather lucky in that way so far -- this is quite a scenario for him to deal with. We eat many natural foods: prepare homemade yogurt, beef & chicken broths, bake bread, do canning, etc., we eat very little processed food (if any). He intends to continue his food-oriented hobbies, as long as he can = he was a trained chef, baker and cook during most of his working life.

  • Hi,

    What type of hallucinations? Seeing things that aren't there...or paranoid delusions? Finding a good neurologist is key.

  • Thanks - as I mentioned previous, (several comments above) there were only 1-2 instances of these 'hallucinatory aspects in the past several months. He has had none since. I've been trying to convince himself to make an appointment for any evaluation here - we have gotten some CBD oil and are trying that -- it seems to have lessened the severity (as well as duration) of his resting tremors, and head & neck movements. (thanks again, for your comment!

  • Thanks for all the highly entertaining posts. You are all, we are all nuts in our own ways, and it takes a larger community to point this out. Please keep an open mind, since both the pill-pushing doctors and the pill-pushing supplement non-scientists tend to have closed off their reasoning. Now for my very briefest of comments -- exercise!

  • ..... and dare I add some exercise pushing individuals (present company excluded Zuke) tend to have closed off their reasoning too!

  • Yes Hikoi, I guess that's why we're lucky to have internet forums like HealthUnlocked that offer alternatives.

  • I find it funny that every body is so closed minded and there hasn't been a cure yet. I actually have found that Parkinson's sufferers are some of the most open minded people there are, even to their own detriment. Yes, they can get totally fed up with all the information " right or wrong ", but are always up to try something new if there is even a little possibility to help.

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