One of the senior carers in P`s nursing home returned from a training session and said she had spoken to the Parkinson`s nurse about PSP. This nurse `told her a lot` about PSP including the fact that `unlike Alzheimer`s PSP sufferers don`t have any loss of brain cells or volume`.
Any comments ?
xx
Hi nanbabs I kind of disagree with that because my understanding is that the brain cells start to wear out at a much faster rate of someone with Psp
That’s sort of what the neurologist told us when he diagnosed Psp
Make sense? Maybe not......
I’m sure you’ll get lots of responses with a much better explanation than mine lol
Hugs darling x
Hmm. When Jerry was diagnosed with CBD at Mayo 3-1/2 years ago, they compared two of his brain scans. One was done in 2010 and the other in 2014. His brain size had decreased so dramatically in four years that it was clear (and heart wrenching) for us to see. The neurologist said that his brain would continue to lose volume as the disease progressed. I would assume this is true of PSP also??
That does sound heart wrenching, sad and frightening. I was wondering if you noticed the decline in his ability in correlation to the data on the scan.
By the time we took Dan to Mayo they felt his disease was fairly advanced, yet he had only minimal visible brain shrinkage. It was however , easy to see a problem in the frontal lobe.
Best of luck to you.
Karyn
Hi Karyn,
Even though the shrinkage was clear on the scans, in 2014 he was not experiencing any trouble with cognition at all (and still is not), but mainly had left hand coordination problems, and balance and perception difficulty (although no falls yet in 2014).
Blessings to you and Dan. This journey is so hard.
Isn’t this the strangest disease ?
Hi NanBabs
Well I've just had a look online...
Here is an MRI scan which shows what is happening in PSP
images.md/progressive-supra...
The cell death is in the mid brain.
But, we don't know how advanced PSP is for this patient.
So yes, maybe, I guess.
However if I am not mistaken some of the frontal lobe in this MRI scan has 'died off' as well.
Best
Kevin
xx
Kevin, the link was very helpful.
Thank you!
Alice x
Thanks for the link Kevin.
Really good images and explanations. In P`s case his cognition has been severely impaired but I know all cases vary. He recognises friends and family even if he can no longer communicate but awareness of time, date, news etc is just not there.
xx
Hi NanB
I'm sorry to hear that.
Yes, there are differences. I watch Liz's symptoms unfurl little by little.
The last three days she has greeted me by bursting into tears of relief and she grips my hands to tightly when its time for me to leave and more tears. She, like P, seems to understand most things going on. However she gets some things so wrong.
It's miserable, Every day I feel I am abandoning her as if to some horrible care regime. Yet the home is a good one. I see the carers doing their stuff and they are very patient and involved with the people they care for.
She must be having some thoughts of being abandoned or something. I've been unable to find out what they are.
Got home and feel gutted.
xxx
So hard Kevin - to give so much and still feel its not enough. No wonder you're gutted...
Hugs 
xxx
Anne G
Yes agree with you all I think parts of the brain do die xxxx
Thank you all for your input - it is exactly as I understood it - the brain `shrinks` because of the Tau proteins killing off the cells. I`m sure when I looked at P`s scans (3 separate ones )over 3 years ago. the neurologist pointed out to the areas where the brain had decreased in size.
If a `specialist` nurse has the wrong information how on earth can we expect to get the proper treatment or understanding for our loved ones ? This carer came away with the news that `the brain is still intact, unaffected by dementia as it would be by Alzheimer`s`. I intend to, gently, put her right when I next see her !
Hugs to you all.
xx
It's my understanding that with PSP ~ one pretty much gets to keep their marbles for the journey which is so sad. I missed any info about volume changing - I'll google it - but like someone once said ~ You'll get 36 answers from 12 Drs.
Yes, I get what you’re saying. Jerry watches the news and although he is barely understandable when he speaks, and is largely immobile, he will occasionally still try to offer background info on a person or situation, like “he was secretary of defense in the .... administration.” His mind is still good. I’m grateful for that, but it also seems like it would be easier for him if he didn’t know what was going on.
Our experience (CBD) is the same as Heidi-Ann's. MRI showed both deep mid-brain and cortex volume loss.
My husband was diagnosed at Mayo (MN) with PSP . His brain scans were explained similar to the one Kevin has referred to. They feel his mid brain has shrunk a bit and they saw changes in the frontal lobe, more on the left side.
In Dans case, the frontal lobe involvement seemed more noticeable to our non medical observations. The changes to the frontal lobe were easy to see.
Although Ch has eye problems , can't stand bright light, seems to not be able to control his feet, laughs and cries easily, falls almost every day, writes and eats slowly he can contribute to conversations and still work out complex fixing problems but having done so is very tired. I'm suggesting that there must be some shrinkage but exactly where it is hard to tell. I understood that the MRI would not show us PSP changes.... just adding my bit.
How far into it is he Val?
Anne G.
He was diagnosed April 2017 (a small stroke 12months before that) but there had been changes happening before ( mood, memory & a couple of unexplained falls). Full time use of wheely walker (waiting for a wheel chair) but able to do small amount of time in garden nursery. Eats okay but we mostly have cut up stews, stir fries & fish. If I go out he lies down to reduce chance of falls. I am usually nearby otherwise. Who knows how far in when all are so different?
Thanks - he sounds a lot like my hubby (who I figure is at least 5 years into it.) You're right: people seem to progress at different rates...
Cheers
Anne G.
Dear Nan, there are more than one PSP. In the case of gate freeze, the frontal lobule is not affected at early times. But, this issue is a matter of physicians. The caregiver could not become an specialist, even if she /he is a nurse. Do not rely on this type of comments as an orientation.
Take care of yourself, this is a long journey. Hugs
weight loss
Brain studies
Do I have PSP? What else?
PSP-R vs. PSP-P
The loss of a loved one
