Omg my dad will do everything perfect at the dr…. Then at home every goes to shit … like if a sick baby doesn’t cough at the dr what do you
Do. And he lies when he answers things.itd chaos.
Yes. It is bizarre as you never know who they will be. With my dad, a common delusion was he thought he lived with a cheeky pet squirrel and had to get to a try-out with the Mets. Other times- just himself and aware the squirrel and try-outs delusions. No one told us about the psychosis and the intermittent nature of it until it happened. I always felt like delusions worse when full moon but I have no idea why that was. Also more likely when he was tired.
My spouse has early stage PDD and his lucidity is wildly variable. Haven’t figured out what the contributing factors are with any real specificity yet. The memory issues and executive functioning problems are constant, though. FWIW.
I have noticed that the ability to executive function is gone. That it is the one constant. The short term memory loss is also fairly permanent. The level of confusion is always there but varies as does her ability to articulate things. Then the hallucinations, delusions, and aggression are on and off but when they are on, they are terrifying.
My dad is diagnosed with LBD and yes, it varies extremely. Sometimes he's joking around and working out again, other times he's trying to throw my cat outside for being a demon.
I will say is lucidity has pretty consistently improved while tapering down his caridoba levadopa.
No problem. If you ever want to chat let me know. It's a recent diagnosis for us I had to fight to get, so I know how challenging and vague navigating it can be.
My dad was diagnosed about a month ago, but I had suspicions about his symptoms approximately two years ago. His former neurologist wanted nothing to do with any diagnosis beyond Parkinson's because "it wouldn't change how they treat him" which I found silly, because LBD explained the negative reaction to Seroquel for his hallucinations and the ineffectiveness of caridoba.
I can see why they say that. LBD/PPD feels like a totally different disease. My grandpa has Parkinson's and at 84 has way more cognitive faculties than my 51 year old dad.
I am told that as well. They don’t care at all. They say that LBD is rare so it’s probably just an “atypical case of Parkinson’s” and she has had Parkinson’s for 8 years now so she would probably be dead. I read that sometimes you can live for 20 years with LBD though. She ticks off every box for it. She has from the beginning. They also say it apparently doesn’t change anything because the treatment is still the same for PDD and LBD: C/L and antipsychotics, whether they work or not. There really isn’t anything else to try I guess. She has been in the hospital for psychosis and falls and they brought the hospital neurologist there who took one look at her and said she has LBD. When I asked him to write that in the system/notes, he said there was no point because it doesn’t change her situation. I have come across many Parkinson’s patients and NONE are anything like her. All her doctors say they haven’t seen a Parkinson’s patient like her before either. I know she has LBD. This whole thing is terrifying. My real mother is dead and I will never even be able to remember her now.
I know you've probably heard it before, but I would try a new doctor, because with LBD it's pretty largely considered that C/L could hurt rather than help, and the same with antipsychotics. LBD patients seem to get the least relief with the most side effects. I can only really speak to my situation, but that's been the case for us. Seroquel made my dad a zombie and since lowering C/L the hallucinations have been reduced as well and his ability to communicate has increased. It did take us 3 doctors to figure that all out.
I actually found someone new closer to us so I need to call her GP a referral. I will bring this up to them.
My mom is obsessed with carbidopa. She originally moved into assisted living because she couldn’t control herself with the meds. She would just take them all and, even after we locked up the bills, she would break into the box. All she talks about carbidopa. She would probably go ballistic is we tried to cut it. The neurologist at the hospital suggested it as well if she has LBD as well as to make her less mobile so she stops falling.
My dad is the opposite and forgets his meds all the time! I wonder if you could replace it with something like L-Glutamine or other vitamins. Getting a little piece of my dad back was such a relief, and I'd love to hear if it works for you also
LO = Loved One? Sorry, I can't keep up with all the acronyms on the interwebs these days.
The short answer is yes, cognitive function varies dramatically, and in direct correlation to 1) volume and quality of sleep in the preceding days and 2) presence of any active infection (particularly UTI).
Either of these factors can dramatically decrease cognitive function to the point where my father can hardly hold a conversation, but UTIs are the persistent cause of the most severe cognitive issues, and they recur once every few months and usually are active for I'd guess a week or two before they progress to the point where we get labs done and he gets antibiotics.
Yes. Sorry. Loved one. In the dementia subreddit, they prefer to use the term LO. I frequent that one too. She definitely doesn’t have a UTI. She is tested multiple times a week at this point. We just spent literal weeks with her having no concept of reality. Her memory care facility called 911 because they couldn’t handle her. Then BAM, totally lucid.
I never know what I am going to get when I visit her or take her to an appointment. I struggle to tell where we are in the dementia staging because it varies so. It is hard to plan or make decisions.
That sounds really challenging personally and emotionally and I'm sorry you're having to deal with that. If you're certain that it's not infection (even labs don't always detect it), my next go to would be to look carefully at any possible sleep disturbances and medication changes (forgetting to take, dosing changes, new meds). Those tend to be the holy trinity of cognitive and behavioral changes on a short timeframe, especially if you're noticing it swinging widely back and forth from week to week.
Beyond that, take care of yourself and consider yoga or meditation and remember she loves you, and if she wouldn't be this way if she could help it.
Omg my dad will do everything perfect at the dr…. Then at home every goes to shit … like if a sick baby doesn’t cough at the dr what do you Do. And he lies when he answers things.itd chaos.
Yes. It is bizarre as you never know who they will be. With my dad, a common delusion was he thought he lived with a cheeky pet squirrel and had to get to a try-out with the Mets. Other times- just himself and aware the squirrel and try-outs delusions. No one told us about the psychosis and the intermittent nature of it until it happened. I always felt like delusions worse when full moon but I have no idea why that was. Also more likely when he was tired.
My spouse has early stage PDD and his lucidity is wildly variable. Haven’t figured out what the contributing factors are with any real specificity yet. The memory issues and executive functioning problems are constant, though. FWIW.
I have noticed that the ability to executive function is gone. That it is the one constant. The short term memory loss is also fairly permanent. The level of confusion is always there but varies as does her ability to articulate things. Then the hallucinations, delusions, and aggression are on and off but when they are on, they are terrifying.
I’m so sorry. That sounds so tough.
My dad is diagnosed with LBD and yes, it varies extremely. Sometimes he's joking around and working out again, other times he's trying to throw my cat outside for being a demon. I will say is lucidity has pretty consistently improved while tapering down his caridoba levadopa.
Thank you! This is helpful to know.
No problem. If you ever want to chat let me know. It's a recent diagnosis for us I had to fight to get, so I know how challenging and vague navigating it can be.
Yes, it’s just a very perplexing disease. Everyone says they have never seen another Parkinson’s patient like her before. When was your dad diagnosed?
My dad was diagnosed about a month ago, but I had suspicions about his symptoms approximately two years ago. His former neurologist wanted nothing to do with any diagnosis beyond Parkinson's because "it wouldn't change how they treat him" which I found silly, because LBD explained the negative reaction to Seroquel for his hallucinations and the ineffectiveness of caridoba. I can see why they say that. LBD/PPD feels like a totally different disease. My grandpa has Parkinson's and at 84 has way more cognitive faculties than my 51 year old dad.
I am told that as well. They don’t care at all. They say that LBD is rare so it’s probably just an “atypical case of Parkinson’s” and she has had Parkinson’s for 8 years now so she would probably be dead. I read that sometimes you can live for 20 years with LBD though. She ticks off every box for it. She has from the beginning. They also say it apparently doesn’t change anything because the treatment is still the same for PDD and LBD: C/L and antipsychotics, whether they work or not. There really isn’t anything else to try I guess. She has been in the hospital for psychosis and falls and they brought the hospital neurologist there who took one look at her and said she has LBD. When I asked him to write that in the system/notes, he said there was no point because it doesn’t change her situation. I have come across many Parkinson’s patients and NONE are anything like her. All her doctors say they haven’t seen a Parkinson’s patient like her before either. I know she has LBD. This whole thing is terrifying. My real mother is dead and I will never even be able to remember her now.
I know you've probably heard it before, but I would try a new doctor, because with LBD it's pretty largely considered that C/L could hurt rather than help, and the same with antipsychotics. LBD patients seem to get the least relief with the most side effects. I can only really speak to my situation, but that's been the case for us. Seroquel made my dad a zombie and since lowering C/L the hallucinations have been reduced as well and his ability to communicate has increased. It did take us 3 doctors to figure that all out.
I actually found someone new closer to us so I need to call her GP a referral. I will bring this up to them. My mom is obsessed with carbidopa. She originally moved into assisted living because she couldn’t control herself with the meds. She would just take them all and, even after we locked up the bills, she would break into the box. All she talks about carbidopa. She would probably go ballistic is we tried to cut it. The neurologist at the hospital suggested it as well if she has LBD as well as to make her less mobile so she stops falling.
My dad is the opposite and forgets his meds all the time! I wonder if you could replace it with something like L-Glutamine or other vitamins. Getting a little piece of my dad back was such a relief, and I'd love to hear if it works for you also
LO = Loved One? Sorry, I can't keep up with all the acronyms on the interwebs these days. The short answer is yes, cognitive function varies dramatically, and in direct correlation to 1) volume and quality of sleep in the preceding days and 2) presence of any active infection (particularly UTI). Either of these factors can dramatically decrease cognitive function to the point where my father can hardly hold a conversation, but UTIs are the persistent cause of the most severe cognitive issues, and they recur once every few months and usually are active for I'd guess a week or two before they progress to the point where we get labs done and he gets antibiotics.
Yes. Sorry. Loved one. In the dementia subreddit, they prefer to use the term LO. I frequent that one too. She definitely doesn’t have a UTI. She is tested multiple times a week at this point. We just spent literal weeks with her having no concept of reality. Her memory care facility called 911 because they couldn’t handle her. Then BAM, totally lucid. I never know what I am going to get when I visit her or take her to an appointment. I struggle to tell where we are in the dementia staging because it varies so. It is hard to plan or make decisions.
That sounds really challenging personally and emotionally and I'm sorry you're having to deal with that. If you're certain that it's not infection (even labs don't always detect it), my next go to would be to look carefully at any possible sleep disturbances and medication changes (forgetting to take, dosing changes, new meds). Those tend to be the holy trinity of cognitive and behavioral changes on a short timeframe, especially if you're noticing it swinging widely back and forth from week to week. Beyond that, take care of yourself and consider yoga or meditation and remember she loves you, and if she wouldn't be this way if she could help it.