I have posted here before and got an immense amount of help and knowledge from other PD sufferers.
My wife has had PD diagnosed two years ago but because her doctor told her that medication she was on probably caused the onset as it appeared overnight she now refuses all medication. She was on Madopar and has been prescribed citalopram for depression which I put in a glass of milk daily, she also takes a tablespoon of Mannitol by the same method but spread over two glasses. I have tried the Madopar crushed and dissolved but it is detectable unlike the Mannitol powder which dissolves instantly and the Citalopram which is liquid measured in drops.
Our main problem we are faced with is the muscle contraction and now she is bedridden unable to use either hand and one arm is bent double ulcerating in the joint, her legs are bent at the knee and now if that was not bad enough she seems to have trouble swallowing and her diet is mainly dairy, ice cream cheese and the odd muffin which means that she must be losing weight. She came out of hospital two years ago with no definitive diagnosis but suggested Parkinson's later that was reversed but other than a complete change in personality there are no other symptoms. However it must be concluded that it is Parkinson's from her joints and swallowing although her memory and verbal dexterity are excellent, better than mine but a different person to the wife I knew for the last fifty five years now verbally aggressive to myself and the carers that tend her morning and night and transfer her from bed to chair and back again by hoist. Fortunately the chair can be moved from room to room and reclines if necessary designed for that purpose clearing each door frame by an inch.
So here we are two years in with little or no medication for Parkinson's and I am wondering if anybody has any suggestions to remedy our predicament that can be taken in a glass of milk without any adverse taste.
I look forward to any ideas that you may have.
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Berrytog
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Please, what is the med accused to have made the parkinsons? How unfortunate to be attributed, she really needs the ldopa and c/l that have been talked of and other folks herej have much more good information to share, but the fear of medication is extremely unwise.
I know of no medication that causes Parkinson's. If any medication were demonstrated to do so it would surely be banned. Which medication did the doctor allege was to blame? In any case it put a terribly wrong idea in your wife's head. I second the prior comment by Nitro53 - your wife desperately needs medication - levodopa is the mainstay. Does she have a prescription from her doctor?
If she will not take prescription medication, Mucuna bean powder is another way of getting levodopa. If you try to go this route use a non-concentrated whole bean powder. The Mucuna concentrates are best avoided because they tend to cause nausea.
It was antipsychotic drugs and possibly Clonazopam that it was suggested could cause Parkinson's . It was even suggested that anaesthetic provided for hip surgery just before may also cause such a problem.However I do have some Madopar and Mucuna with Levadopar in powder form but my wife is very vigilant.
A good number (though not all) of anti-psycotics can cause some of the rigidity symptoms but many don't so MUST be specific with the med name and dose because several are known for this but many are much better and meet needs better, I don't know where you were getting your professional information but you really need professional help, and I do mean professional, specialist help, neurology, and If anti psychotics were involved that implies a psychotic condition being treated and many of the base pathways for antipsychotic conditions, such as schizophrenia involve dopamine, the important use of which is incredibly important to help with Parkinson's also, but with dexterity, so it is a matter of some artistry and deftness and dexterity and prescribing properly, thus the great need for thorough professional assessment and prescription and management and thereafter adjustment with much relief possibe, even likely...you just cannot tolerate her having those contractures and other terrible symptoms.
So what exactly was the antipsycotic's name and dose? And what was it's specific intended purpose? It's quite possible you needn't lose the wanted benefit without suffering the rigidity, by using the right alternative.
You must deal with the fear and be reassuring. It is easily possible to inadvertently make things much worse through not being familiar and professionally assisted, there is a lot of needle threading to effective treatment, but management is possible and many people here have had much success especially in their early years of Parkinson's, so please try to learn quickly and be reassured by the people here on this list quickly... Those who have acquired expertise through long practice as well as study and of course being patients and caregivers themselves.
Now what was that medication and dose please? Specifics.
Clonazepam, on the other hand, is a very mild relaxer and sedative, so somehow you have gotten it's view very badly opposite from correct...if you were a doctor you'd be up for malpractice, rhe idea is that badly opposite re clonazepam. Hopefully you misunderstood, and must consider that you could do great harm by misunderstanding.
Thanks for all your comments and help. She was taking Clonazopam for about eight years before her hip operation and after that she was put on about six other drugs by a doctor responsible for older patients, he arranged a Datscan which showed the possibility of Parkinson's by a depletion of Dopermine after a few months of all these drugs she decided that they were doing more harm than good and has not taken anything since except for the cipramil started a month ago for depression because her psychiatrist thought that depression was causing her not to take Madopar prescribed for Parkinson's symptoms as well as others such as vitamin B1. She has had a recent review of her mental health to see if the antidepressant is working. Unfortunately with a diagnosis "capacity" her doctors can do nothing to intervene with her choice but I would argue that there is some element of psychosis preventing her from taking medication that would provide a normal life for us both, so I will try and get my GP to arrange a private appointment with a specialist neurologist, however being bedridden and medical professionals not visiting patients due to this pestilence we are all suffering from it may be difficult. I have had a vaccine but my wife has not yet as it will require a district nurse to visit.
Ok, yes this is the time for a neurology specialist.
Meanwhile, Perhaps consider for her depression "duloxetine," with using clonazepam episodically as needed for when the duloxetine may push into making her sleep not restful.
But again, whatever for parkinsons, specialist, not a gerontologist but rather a neurologist...with cross consult to a psychiatrist... who's willing to consider how to QUICKLY manage, adjust, & counter for side effects.
And in general, dopamine-suppressing antipsychotics are pretty clearly CONTRAINDICATED for people with parkinsons (the words "lunatic" and "malpracticing incompetent sadist" come to mind)... make sure you use that exact word "contraindicated" with your prescribers to get them to please at least do some "first do no harm" homework, or simply show them this passage. Perhaps it will help them engage their shame (assuming they've got one).
It was interesting to read Faridaro's attachment of the article in Pharmacy Times which says that research has shown that antipsychotics can cause of worsen Parkinsonism symptoms
I believe, if it's not too stressful, you should find another doctor, perhaps a movement disorder specialist. It's tough since she's refusing to take meds. Will she take vitamins? Also, if you could get her something else to eat. Dairy is not the greatest for Parkinson's. Maybe something like Slimfast or Glucerna? Play some music to see if that will help her relax.
Thanks for your comments I will speak to my GP about a specialist, I agree about dairy, however it is difficult to persuade her to take risks with medication.
Too much proportion of Dairy may have too much protein and may make things quite a bit worse for her, although it is settling to one's stomach and palatable. So please converse with your doctor about that as well.
The recommended use is two per day. Space them out - one in the morning one in the evening. She may need at least three per day given her condition, but you need to gain her confidence, so follow the instructions for now. 🌺
P:S: This supplement replaces Sinemet - the gold standard for Parkinson treatment - on a one to one basis. ✨🕊✨
What an irresponsible thing to do, telling you that it was a med that she took thatcaused it! He doesn’t know. Clonazepam is something that we are prescribed when we have Parkinson’s and rem sleep disorder. I have never heard of it causing Parkinson’s.You need a movement disorder specialist or at the very least a neurologist. You need a partner in this situation as it is so stressful on you and you don’t want to burn out.
Yes, dystonia and spasms, but you know someimes patients and caretakers can get things wrong too, think about it, what actual doctor would make such an incredibly opposite mistake? It's very easy to make a mistake when you are 80. Some people (not all, of course...like you, 96 holy cow) lose clarity over time. My own father-in-law, a lovely man and lifelong minister no less, pretty much did as much as he could to kill his wife, because he had dementia as well, after she contracted bone cancer, because he was the husband after all and very mobile and independent, and his dementia definitely advanced yet not outwardly noticeable to the untrained eye, yet out of touch badly about understanding others, even his intimate mate of 50 years, and it was his daughter alone, my wife, left as the one who had to take care of her and suffer her through 2 years of absolute hellish pain, while he, the husband, would try to do things like stuff her into their car in order to go to a restaurant for supper, while during that two years every one of her bones broke... meanwhile he's out playing golf, hunting, and working 3 part time pastoring jobs just to fill time, and nobody questioning the patriarch because they were timid (midwestern Methodists, you know, wouldn't say "shit" if they had a mouthful...)...things happen when you get old, including your eyes, perception, and thinking. . So maybe it's not necessarily the doctor, eh?
Magnesium oil is the best natural remedy for muscle tightening and pain and Magnesium L-Threonate in capsules. Also, Melatonin is another supplement for REM and insomnia.
I am so sorry to hear this..My Mum was diagnosed with Parkinsons 10 yrs ago. It took a lot of doctors to eventually diagnose her. She was at the stage before diagnosis, that she thought she was dying with a terminal illness she felt so unwell.
It wasn't until she took that first Madopar tablet that everything changed. She literally changed overnight.
Prior to taking Madopar she would bend down and her knees sounded as loud as a creaky door..This completely stopped with ONE tablet.
If you can try and have her take her medication for just 3 days she will notice a huge difference. Once she feels the benefits I think she will be more accepting.
Have you tried soluble Madopar. Maybe you could try it in a milkshake. I so hope you find a solution. All the best!!
Yes, we have the soluble type which I also crush to a powder and put it in milk. I have done this a few times but see no benefit and I have been told by Parkinson's UK that milk destroys the benefit. They suggest that I use juice or just water but the only thing she will drink is milk.
Did anyone mentioned Botox in her arm or knees especially to relieve the contractures? It's not a permanent solution but might help. Must be painful so I hope some of these replies help with the next step.
I'm so sorry you are having this struggle trying to help your wife. I'm sorry she has refused what could afford her much help and get her to feel better. It may take unlearning her rationale, a bad past experience to have a trust in THE medication that can help her.
From all I've researched and read, and listened to experts, medication doesn't cause PD but it can progress the symptoms faster. Your wife has already been through a lot, and I'm sure, possibly, that she doesn't trust what a different type of medication might do.
Does she have a kind, positive Dr that she trusts that can give her facts of success to taking the medicaton?
I don't dare pretend to know what your wife's thought process is, and I know from what you said, she's been through a lot , and forgive me if I'm writing out of line, but do you know: has she ever accepted the fact that she has PD? has she been going this long in the denial stage of grief? Could her present state be depression and anxiety that she's not able to accept herself as a vital part of your relationship, that she still has dreams and hopes to live for? I'm just asking as an outsider who's watched and lived through my husband's going through the stages.
Please take good care of yourself as you care for your wife, and talk to her Dr.
Keep us updated on your journey.
Peace can happen for you both. I pray you feel it soon.
Thank you for your kind response Hudband supporter. My wife has always suffered from anxiety and her GP and psychiatrist think that depression is causing her lack of interest in the medication and that is why she is taking Citalopram ten drops a day in milk. She does deny having Parkinson's. Over the years there have been instances where she has not believed a diagnosis and believes that something sinister lies behind it, generally a cancer or some such thing. For the last twelve years she has been suffering from a trapped nerve in the bowel, Pudendal a Nerve entrapment . That she believed was a cancer that all the tests had missed, I spent nearly thirty thousand pounds visiting the best in the land in London with no further evidence but this meant that our lives were curtailed and in that time we have only ventured out once to my elder son's wedding. However since the current problem there has been no mention of the pain in the rectum in fact she has no pain but her current condition of being bedridden will only get worse and I wake in the early hours trying to think of a solution to her refusal to take medication as I know that with it we could have a normal life only being diagnosed two years ago. She cannot go on as she is, the bent right arm is ulcerating and now I am faced with swallowing difficulties which means she is losing weight as she survives on a diet of ice cream and milk. There are no symptoms other than the contractions and I have four medical opinions two differ and say that she does not have Parkinson's but it is clear that she does and although she is deemed to have capacity I do believe that there is more afoot and her psychologist suggests that there is a personality problem affecting her decisions. Once a shy reserved intellectual with a good understanding of people now an aggressive verbally abusive person to myself and the carers that started a year and a half ago and only gets worse, again a symptom of Parkinson's but not experienced by all.I have put a call into my GP and we will speak at length tomorrow but because of her diagnosis of having capacity he will be reluctant to do any thing that goes against that so I will ask for a referral to a specialist neurologist privately and see lf something can be done to intervene and provide medication against her will.Aftetall can somebody be considered of sound mind if they refuse medication that is proven to make them better irrespective of whether there is or is not dementia involved.
As I have endured this for so long devoting every hour of every day to it but getting nowhere i am considering employing a full time nurse with the experience necessary to deal with the problem either twelve hours a day or twenty four but for me the last resort would be a home, this is her home of fifty two years and I would make arrangements for that to continue if anything happened to me, however we have both had our first jabs but I will continue to shield and observe the rules but it was my big fear that if I got Covid who would look after my wife as I have comorbidities on top of my own blood cancer diagnosed in 2006to worry about .
A long winded reply but it may help to understand with the whole picture.
Since You said you give her Mannitol... you might try this product to provide some Mucuna. I have tried it and ther is no detectible flavor other than miniscule sweetness. I mentioned it in my blog: "That is when I found research findings made in Israel (you will need to read the script, unless you are fluent in their language) on the web site for Mannitol. "Homeotreat developed a unique MANNITOL powder, containing, not only the natural sweetener (Made from vegetables such as onions, pumpkin, seaweed, mushrooms and more), which causes a decrease in the production of the alpha-synuclein protein but also the MUCUNA plant, which supports the increase in the amount of essential ingredients to healthy brain function." top-probiotics.com/mannitol...
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