My WWP was diagnosed in 2019 and she has developed dementia. She recently saw her Neurologist and she asked to have an MRI scan to exclude any other conditions that may be mimicking the dementia.
I was not aware that there are certain conditions or medications that can mimic dementia so I prompty did some research. Apparently there are a number of things that can do this, including PD medication such as Carbilev or Sinemet.
My wife is on 5 x 25/100 Carbilev and 1 x 50/200 Sinemet SR per day. She also takes 5 x Mucuna capsules. I would now like to try and gradually reduce her Carbilev and if she does not do well, then increase the Mucuna which, by all accounts, seems to be better tollerated.
She is also taking sublingual B1 10mg 3 times a week and I have managed to do her a pair of PD gloves as posted on YouTube. She has been using the gloves for over 8 months and, after applying them twice a day for a total of 4 hours over 5 months, she is now down to 1 hour a day. I am sure this has substantially helped her motor symptoms. She walks well, has not lost her sense of smell, does not have diskenesia and her right hand only shakes when she is slightly anxious.
Perhaps she should have reduced her Carbilev sooner but I have been reluctant to do so as, apart from the dementia, she has been doing quite well with her PD.
Does anyone have any further information or similar experience regarding dementia?
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Rafiki2
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My wife is 69 years old and the dementia was not diagnosed as I don't think there is an accurate way to diagnose dementia. She is delusional, has hallucination and trouble finding the right words to express herself. It was presumed by the doctor that, as 30% to 50% of PWP develop dementia, that this is what she has. Or, it may be LB dementia.
I am just hoping that the PD meds she has been taking could be the cause and that this is reversable.
Carbilev and Sinemet are both carbidopa levodopa and Mucuna is levodopa, so these are all similar. Here are a couple of threads of hallucinations caused or aggravated by dopaminergic medication:
The links you sent are a mine of information and I am even more convinced that the "dementia" my wife has is being induced by her medication. I started yesterday reducing her Carbilev by half a tablet and shall progress gradually over the next few weeks to see what happens. Shall post the results.
Meanwhile, for those of you that are having problems sleeping, have anxiety and depression, there is a device which I got my wife about a year ago from the USA (I live in South Africa) which I can highly reccommend. It is called Alph-Stim alpha-stim.com/ My wife has been using it regularly (20 minutes x 2 per day) and she has no problem sleeping. Her anxiety and depression also hardly ever bother her.
The NHS in Uk recently did their own testing and have introduced this in the UK.
You may want to take her to a neuro psychologist for diagnosis also. I wish we would have done that a couple of years ago, as now he’s too variable and his speech is too far gone to do the mental exam.
(Also someone mentioned checking b12, but there are other things too like sleep apnea, UTI, or other infections, etc)
My WWP also has the same issue. She is 74 and was diagnosed in2015. If you can back off the meds definitely do so. We could not so hallucinations and delusions got worse. We tried several anti psychotics and nothing helped then finally got Clozapine and it is working. Research Clozapine. They don’t let you have it until at least two other anti psychotics have failed but it has the best success rate. Our lives are a hundred times better now.
I will certainly keep Clozapine in mind but first I shall try and see if my wife will be able to reduce her PD meds, with maybe a little more Mucuna.
There are a number of reported cases where people that are taking high dose B1 and/or making use of the Tass type gloves, have managed to reduce their meds without any problems. As my wife is doing both, I am hopeful that this will be the case with her.
It is astonishing that most neurologists or doctors do not seem to know that dementia like symptoms can be caused by PD medication. The cases of PDD might in fact be a lot lower than reported and many people may improve their lives immensely if they are able to reduce their meds.
Sounds like you are definitely on the right track with everything your doing. We also started the B1 therapy with the sublingual 100mg three times a week about a month ago and seems to be helping and we have high hopes. Also, the 50/200 Sinemet really made my wife’s hallucinations and delusions much worse so if you are backing off of the Sinemet you might want to start with that one. Even though we were not able to back off of the PD meds at the time. I believe we will be able to by using all of these strategies like the B1, gloves, supplements, walking, exercise, etc. It is astonishing what Neurologist do not know. This forum has helped far more than any neurologist has.
My friend was not becoming demential but was starting to experience memory loss, difficulty to concentrate, a weakening of mental capacity of learning reported by medical practitioners. That scared me a lot. That’s when I started to look for new paths.
I started to follow a lead on Ambroxol which is currently tested (Phase III ) in London UCLA by doctor Shapira. There is another ongoing study focusing on Dementia.
This medicine appealed to me as you can get it freely without doctor’s advice. It has a small number of side effects which must be however checked. Look it through !
I started on a low dosage on the 20th of December with a small dosage (4 pills a day : 30 mg each) and increased only very slowly. I then increased more drastically to 16 pills a day about a month ago.
Doctor Shapira gives a treatment of 42 pills a day but those are very bitter and my friend felt nausea so in his case, there is no need to raise to such a high level.
I see a very positive reaction. My friend’s mind is much clearer. He is more focused. We can enjoy again nice conversations. He sleeps better. He faces less issues with urine at night (“incontinence” in French).
Good luck with you beloved ones !
Nathalie-Josée
PS: I also ordered a bundle from Symbex Australia (red light therapy). For this device, I discovered that I needed to start very low as my friend is extra sensitive to it. I got a special very progressive protocol from them.
AND
I am about to start building DIY vibro-tactil gloves.
I will let everyone know how all of these adjust together…
I just couldn’t keep on seeing him go down hill like that and me with him !
Sorry to hear about this, it could be a very bad sign. First I would ask what was the last change she made to meds? Did she add macuna or B1 recently? Because this could indeed mean that she is overdoing on L-dopa and if so reducing meds will clear it up.
We’ve tried a whole bunch of things and nothing helps much. Reducing the meds helped, but now he can’t walk or speak.
But the ideas from Natajo are very good… just started ambroxol and it might be helping. He’s on such a small dose so far that I’m not sure yet. But it’s really hard to source in the US.
Dementia is very common among people with neurodegenerative diseases in general, and just about anything can trigger a spell, it does not have to be exacerbated by a particular medication, can be something cardiovascular, standing up, sitting down, going to the toilet, doing nothing... or really just many things, although often it might be a med too. It's a large area to cover from scratch, just offer to help the docs as much as you can while they go about trying to identify what is happening.
Dementia is common in PD, especially after the 7-year ‘honeymoon period’ post diagnosis. If it develops before PD diagnosis, it is termed Lewy Body Dementia. If after diagnosis, Parkinson’s Dementia. Certain PD drugs can exacerbate symptoms however. Rivastigmine can help. My husband was diagnosed with Parkinson’s Dementia two years ago. As if PD was not enough…It is heartbreaking.
my hubby on the long life ER madopar which has levodopa and benzeramide in it got sundowning which they said was disease progression. He also become unable to get himself onto the bed. He started getting very manic at night. I put him back on the fast release madopar on a much lower dose and he soon recovered. The slow release ones build up to a high level over a week or so and were causing mania.
I’m not sure what carbilev is but I would try reducing it slowly and see whether it helps. We have settled on a much lower dose more frequently of the instant release and he is much more mobile and the sundowning went away immediately.
Something you can think about trying, if you haven't already .... At one point, my father's cognitive abilities had taken a turn for the worse. He was tested for B12 vitamin deficiency, which we learned can be a cause of cognitive impairment and is common in people with PD. He was deficient in B12 and took B12 supplements, after which his memory and thinking improved noticeably.
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