Hi, my mum has Parkinson’s or Parkinsonism. She has been diagnosed a couple of years now. Mostly is just physical, but the doctor convinced us to try Simemet last year. Since then mum’s been having metal and cognitive issues. We tried to stop the tablets as per the doctor’s request, but they said it was too fast and to do it slow…
The worst part is the delusions. I don’t know what else to call it. It doesn’t happen often, but every now she has “a big one”. And I’m so scared I’m loosing her…
Today was the worst ever. It always happens when after she’s fallen asleep. She wakes up and the dream is real. She keeps saying that she wants to go home, but she is home. She keep asking where everyone is, but I’m the only one where. I’m the only one that’s ever here. We live together alone. We’ve lived here for 40 years. She’s house bound so never goes anywhere, but keep saying that we went here by car and she wants to go home. She can’t remember where the rooms are, or where I sleep, but known where everything is, like toothbrush, sponge, tea, etc. But that’s not enough to convince her she’s home. She says I’m making it worse because I won’t believe her, and that I’m not telling her the truth, or lying about where she is. She says she’s scared, and I’m scared too but I don’t know what to do.
I don’t know how to help, i am so alone. I have no one to talk to. No one else knows what’s happening. I told the PD nurse and she just said keep taking the meds at this level. I pray it’s the tablets because then if we stop them maybe she’ll be ok for a while…. But I’m so scared… and I’m so alone… and I don’t know what to do….
Good morning jimjimcheri … So sorry to hear that you are having such a worrisome time with your Mum.
You don’t say what your Mum’s physical Parkinson’s symptoms are & whether Sinemet has helped with this.
From the NHS site … Serious side effects
It’s possible to have serious side effects with co-careldopa [aka Sinemet]. Some of these are rare and happen in less than 1 in 1,000 people. Others are more common.
Talk to your doctor or specialist nurse if you:
start gambling, binge eating or shopping uncontrollably or have an unusually high sex drive – these can be signs of impulse control disorder
have cravings for larger doses of co-careldopa than you need to control your symptoms – these can be signs of dopamine dysregulation syndrome
feel unusually sleepy or suddenly fall asleep during the day
Call your doctor or call 111 now if you:
get mouth ulcers, bruising or bleeding gums – these can be caused by a blood problem
feel light-headed or faint
have strange or unusual thoughts, including thinking things that are not true (delusions)
see things that are not there ([hallucinations].
have mood changes, including [anxiety].
are thinking about hurting yourself
Above the NHS strongly suggests that you should contact your GP / phone 111 / Neurologist / Parkinson’s nurse.
I too am on Sinemet & endure very real dreams. I think this is more common than is officially realised.
You might also phone the excellent Parkinson’s nurse’s here at Parkinson’s UK & talk to them. 0808 800 0303
Delusions and Hallicinations are common in Parkinson’s Dementia. My husband with Parkinsons has been getting them since January. He has recently started on a patch which helps somewhat. The best advice I got from from the Parkinsons nurse which was to acknowledge what they see, point out it is probably a hallicination and then deflect and change the subject as reason will or long conversation will not probably go anywhere.
These are common in people with Parkinson’s when they have dementia which occurs in a large majority of PWP after 10 - 12 years or more.
sorry to hear about your Mum. talk to your GP about it there may be other things going on other than the PD and it sounds like you may need some support too.
Thank you so much for you reply and for so much detail. I didn’t realise that real dreams were so common. It’s a comfort to know we are not alone.
My mum didn’t really get any benefit at all from the sinemet. a slight easing of hand tremors and maybe a little easier walking. But they have been making her so confused. Since starting them, she’s been unable to do tasks she’s always done, and can stop falling asleep. She had no cognitive issues before taking them, but the higher they our the dose the worse it got until finally it was decided the pros didn’t out way the cons.
I will definitely give the nurses here a ring. Maybe they will have some suggestions.
I cannot thank you enough for your kindness and your replies. Knowing I’m not alone has eased a knot that has been growing tighter around my heart for a while now. For the first time in months, I feel I can finally breathe again. Thank you. Xx
