My husband was diagnosed with Parkinson’s 2 years ago. He is 78, suffering from mild cognitive dementia, stiffness, pain, drooling, and has just been prescribed Donepezil. Has anyone been prescribed this drug and did it have any effect?
Hello, my wife has had Parkinson’s since 2007 at 45 , she has just been given Donepezil.
As she has bad hallucinations from other medication.
Since the hallucinations and smell hallucinations have started her memory has slipped and she’s always now asleep. She just not the the same person she was 18 months ago.
She has started to take Donepezil in the mornings , The side effects are shaking, headache, and feeling sick… I hope the side effects go off quickly as in a week or so or she will just stop taking them …
as I want my wife back as she was … And my wife is getting fed up with being ill all the time with A, PD and B , the medication side effects
She also now has problems walking as most of the medication she was on now has limited effect ( Stanek x7 )
Donepezil or a patch should bring back some memory that’s what I was told… " It always works " by a neurologist. I wait and see
Now something for the walking… please
It seams the longer your PD goes on for the less they know what to do to help… But everyone is different…
I live in hope… For some kind of cure. Dam PD …
I believe coconut oil in black coffee can help memory problems, check out YouTube also keto diet and red light therapy for pd and intermittent fasting. Don’t give up and good researching
Hi
Given the drug she has been put on, does she also have a diagnosis of Alzheimer’s as well as PD?
Regards
Doug
Hello @Douglas . Long story… short answer no Dementia or Alzheimer’s
Story…my wife had bad hallucinations last year , was told it was the Rotigotine patch “always is " went from 8 mg to zero in 3 months.
I asked what will you replace the patch with as in dopamine… nothing.
By December 2024 my wife was unable to walk , talk she slept for around 18 hours per day, we had to use a wheelchair , we found out that due to excessive sleep she was not taking her Stanek which should have been 7 per day, perhaps only taking 1 or 2 …
Our local PD nurses team then said well give her a walking frame and Rivastigmine, … Where’s the dopamine replacement!
January PD nurse said … needs a mental health assessment… … ( now remember she has no dopamine in her system…)
Off we went to mental health… She had an ACEIII test ( look that up) a score of 45/100 a diagnosis of Parkinson’s dementia… and noted serious walking difficulties. Given Donepezil… For memory … No dopamine replacements!
By March (2025 ) we were just about to give up living… It was so bad …
I went into the medication box got a 6 mg Rotigotine patch stuck it on my wifes arm as a last resort… Next day she was walking , talking. And awake… .we demanded a retest of the ACEIII , which we got in May … The score was 90/100 which could be normal or mild cognitive impairment.
We have now some sort of normality … back
We have taken advice from PD UK representative, we have made contact with PAL in our local NHS area, we are also changing consultant as In his words " reluctant to reinstate the Rotigotine patch” .
We are now NEVER going to ask for any help again from our local PD team, as they made an assumption that " one size fits all " in Parkinson’s … everyone is different… this ending could have been different . I myself may not have been here…
Our lives were hell for 6 months … Thanks to the PD team…
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That is horrendous that you and your wife should be put through such an horrible and worrying time.
I keep reminding people that they can receive their Parkinson’s treatment at any NHS hospital. People are not bound to stick to their local hospital. I was diagnosed when I lived in London by the National Hospital for Neurology and Neurosurgery (NHNN) in Queens Square, London. That was not my local hospital at the time but is a centre of excellence and I asked to see my first neurologist there. I have since moved to Lincolnshire and now to Norwich and I maintain my Parkinson’s care at the NHNN. The care of my consultant is exceptional.
I wish you both well on your onward journey.
Doug
Hello once again @Douglas .
Absolute Hell , Christmas day was the worst day ever .
So back in 2007 we lived in Northamptonshire , we went to Leicestershire for a DATscan and continued there with the consultant, untill he retired.
Then transferred to a Wonderful team in Northamptonshire until 2021 when we moved to Lincolnshire. ( Norfolk boarder) So our local Parkinson’s team are in Lincolnshire and our consultant is in kings Lynn QEH .( He’s based in Norwich ! ( PB ) ). We recently found that the consultant had done something similar as our story to someone else …in Hunstanton. But with a unhappy ending …
We had the results back from the ACE test … Normal , slight cognitive impairment,
The doctor said that Parkinson’s is motor problems not cognitive … so next question why did the lack of Dopamine have such an effect on my wifes cognitivey, in such a way that she did not know where to toilet was or could not get on to the bed so many questions…
Apparently your local team has to be in the same county as your doctor But the consultant can be anywhere. We trying Peterborough
Who told you about you being bound to the local team? I lived near Spalding and all my Parkinson’s care came fro the National Hospital for Neurology and Neurosurgery. None came from Lincoln or Pilgrim. Now I am in Norwich I get care for my leukaemia from Norfolk and Norwich but my Parkinson’s care is still from NHNN, Queens Square, London. Under the NHS you have the right to have your care for any illness from the hospital if your choosing. If you are being told anything else then that is wrong.
Where you can receive the best care is what is important. That is why cancer patients will often travel for their care to centres of excellence and not their local hospital.
Regards
Doug
Hi @douglas , now that’s interesting… was told had to be " some location as doctor" as in Lincolnshire boundary , never been to pilgrim only Johnson’s.
We’ll try to transfer everything to Peterborough or maybe Norwich …
Thanks for information …
Hi.
I am guessing that you are in Spalding area if you use the Johnson. Please see this: https://www.england.nhs.uk/wp-content/uploads/2017/03/patient-leaflet-digital.pdf
You could get your GP to refer you to a hospital like mine that has a good reputation for PD treatment. If you can travel via Spalding and Peterborough to Kings Cross then the NHNN would be a great choice. If not then the staff at Norfolk and Norwich are very nice but I do not know what the care is like. I was taking part in a clinical trial of a drug to prevent falls there but I have never been their patient for PD - although I do use N & N for cardiology and my leukaemia care.
Hope this helps
Doug