Hello, it’s me again! As some of you know, I’ve been having a rough time of late, with the severity of my dad’s recent decline. After a lengthy assessment over the phone with my dad’s neurologist today and discussion over his worsening symptoms he thinks my dad also has Lewy Body Dementia. His delusions are so distressing it is really affecting his quality of life. He states he will be prescribing him an antipsychotic medication which hopefully will help. I can find few sources of information on PSP and LBD co-existing in someone and just wondered if anyone had any information to share? Both diseases share many similarities. All the neurologist told me is that the prognosis is not great with the two conditions affecting his health together. Thank you.
PSP and LBD: Hello, it’s me again! As some... - PSP Association
PSP and LBD
Hi there, one thought get in touch with the PSP society, they would definitely be able to give you loads of information. What about the social worker? Hope this helps sure others will come back with other ideas xxxxxx
Thank you!! Oh I didn’t think of the PSPA- I will give them a ring tomorrow and see what they sau. The social workers we’ve had haven’t been the best sadly, so I’m not sure they would be a great source of help! Thanks again Xx
I think you need to get the social worker on your side to move forward, also the district matron, you are saying the social worker is not good speak to her boss, it’s the way forward. It hard you have to get upset and stand up for you dads rights, it hard but you will get use to fighting his corner x
I speak to social services every day at the moment. I just don’t think they are the best for the advice I need- or I haven’t spoken to one of the decent ones yet! I have a new lady who said she will do some chasing for me. I’ve asked for a referral to the local hospice, so hoping I can start to get a bit more help behind me. X
Symptoms of atypical Parkinson diseases can overlap. A few people have found after the patient’s death the brain biopsy showed they had they didn’t have PSP or CBD but Lewy body disease.
Thanks Jeff. Yes, I’ve read up on a few things and I guess we’ll never know unless an autopsy is done. His neurologist is certain he has PSP due to his quite severe eye symptoms- he can’t really move his eyes much anymore. He said the level of dementia my dad is showing is not typical with PSP though- so I’m guessing some crossing over with LBD. Who knows. It’s all a minefield isn’t it. Just want to know so I can best manage him in the future.
I remember some time ago that someone posted about the results of brain autopsy, which came as a bit of a shock for them as the main culprit I think was PSP or maybe CBD with a lesser degree of Lewbody and Alzheimer’s picked up. The symptoms of all these diseases can overlap making it extremely difficult for the neurologist to make a firm diagnosis - they will often say something is ‘probable’ based on the clinical symptoms.
Knowing a definite diagnosis won’t affect the outcome nor indeed the type or level of care your dad will need. Push now on getting the help he currently requires on a daily basis along with aids in the home that he will need to keep him safe. If things are put in place now you will avoid a crisis later on. Remember, things can change very quickly with these diseases, sometimes overnight.
I know you are finding this all very overwhelming - keep fighting until you get what your dad needs and make a note of dates and times of calls so that if you don’t get responses then you’ll have those notes to fall back on. Your dad needs a case worker and it’s unacceptable that you seem to be constantly hitting a brick wall.
Deep breath, keep fighting and keep us informed so that we can help you along the way where we can.
Hils
x
I guess you’re right. It’s just so frustrating not knowing how something will pan out. It terrifies me. I have a lady from SS who has helped me push to get my dad an assessment for CHC- so now awaiting the date this will be done on. Then hopefully I can get help with the best options for his future care. Thank you for your advice- excellent advice as always 😊 x
hi. My husband was diagnosed with LBD in 2016. Without informing me or even mentioning it, one neurology visit's notes also stated probable CBD. Another MD said PSP. From all I have read and observed in him, I agree with the PSP. In May 2016 he was walking and talking. Today, 4 years later, he is in a wheelchair and is 100 % dependent on others for all ADLs.
I have a question that you may think is odd. I do not mean to intrude, but did your Dad ever take cholesterol medication?
No, he’s never taken any meds for cholesterol- although, I’m pretty sure his cholesterol levels have never been great as his diet was meat and dessert heavy! He’s never been one to visit the doctors...until the last 5/6 years when he’s had to.
Yes, all the conditions do seem to overlap and be so similar. It’s hard to know but you’ve obviously educated yourself on everything and are the person who can make the best diagnosis, being that you spend the most time with him. I think my dad definitely has PSP due to basically being a classic case (so the neurologist said) he just has this added extra level of dementia also. His father suffered dementia before his death and was having practically the same delusions apparently.
thank u for reply. You may have already said this in a previous post I'm sorry if it's a repeated question did he have any kind of tests to support this diagnosis
PSP -he had a scan and then met with a neurologist who diagnosed him based off of his symptoms. He had a full body check, tests and they stripped him down and took photos etc. The dementia was a phone based assessment due to covid- so that diagnosis is the one without an official diagnosis, just what the neurologist said he thought was likely.
I see..Yes, they only guess
I think you can only ever really know after death with an autopsy. There is no specific test really. It’s so frustrating.
Glad you checked in again. This is a good forum for finding people who will "walk" with you step by step. Good advice here for you already today. On the administrative side and getting care and support for your father, I especially agree with the counsel to write down the date, time and name of person with whom you speak as you navigate health systems. I suggest it not as a vindictive act, but as an important way to build your case and chronicle facts as you work to help your father.
Also agree that whether he has PSP or CBD or Lewy body dementia, the day to day care and outcomes won't change much. However, I am a little concerned that if I understand you correctly, his dementia was diagnosed "over the phone" or in a very short assessment. The longer (several hours) tests for dementia, done by a well trained clinician, can refine the dementia diagnosis and help you to have expectations that align with your father' diminished cognitive functioning My husband's presumed CBD diagnosis (no one can know while the patient lives, of course) was initially triggered by the findings of a neuropsychologist who observed certain thinking patterns that were assessed in the longer tests. It was useful to me in understanding his limitations in certain areas of thinking that control his behavior. You are doing a terrific job as you care for your father, and I admire your commitment to his care.
Marilyn
Hello, thank you for replying! And thank you for your kind words. I just want him to be comfortable and receiving the best care- as I feel bad that I am not able to do it myself. I’m trying to keep a document of everyone I speak to- hard as I feel like I’ve spoken to hundreds of people! I’ve just been told they aren’t assessing people for continual healthcare funding due to covid so I’m back at square one. I’ve been chasing up the social worker who’s been helping me out. Not sure how they can just stop all assessments as it’s for people with serious and life limiting conditions! I’ll see where I get as his savings are going fast and we need some other options.
The neurologist said it seems mostly like that- it was a video call with my dad and me. He said when we are able to go to appointments again he will go to the memory clinic he works at to get properly assessed. Again, it’s shut due to Covid- no face to face appointments yet. This virus is really putting a spanner in the works! I realise now that regardless of the diagnosis, his care needs will remain the same. X
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