confused: Hi I saw a video of a doctor... - PSP Association

PSP Association

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confused

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Hi

I saw a video of a doctor( who is trying to find a cure for PSP), in America being interviewed ,and she explained that the protein Tau destroyed random brain cells that controlled various parts of the body. So how can someone who has lost their speech regain it again? Very confused.

18 Replies
Kevin_1 profile image
Kevin_1

Clytie - Hi

Imagine a model of the brain in front of you. Now imagine you have a number of small pieces of wet cloth. You place these bits over various parts of the model brain and they stick. This is the Tau protein. Where they stick can no longer get nutrients etc and those covered areas die. The protein tends to be laid down in typical areas, so typically those areas progressively die and we get typical symptoms as those functions are lost.

In other words it is not random brain cells, but areas which are progressively affected. And areas of functioning which are lost.. e.g. speech, walking, balance etc.

And here is the answer to your question. The brain, we are learning, has the ability to relocate some functions to other parts. So a stroke victim might loose speech because the speaking part of the brain dies off. But the brain can relocate that function to other live cells. The person has to learn to speak again. e.g. teach those new cells, but it works.

With some disabilities they do a lot of physical stimulation to make the brain learn. So children born with physical handicaps can learn to move nd use limbs because they ge massage, and physio therapy which makes the brain learn to move them from the stimulation of them being used.

For this reason my Liz has massages, uses an exercise bike and does hydrotherapy in the hope that we might keep various movement functions longer by encouraging her brain to keep re-allocating cells.

I am not the best communicator so please do come back if I am not being clear and you want to clarify.

Warmly

Kevin

in reply to Kevin_1

Thanks Kevin that is the best explanation I have heard much much clearer now. Thank you very much.

Doglinton profile image
Doglinton in reply to Kevin_1

Heady thought it was the neurons, not the brain that was damaged. Then it makes sense that new pathways can be formed and that explains the " recovery " of speech or movement.

You are saying that brain is damaged but can learn to compensate.

Have I understood ?

I have assumed that tiredness was a big factor in the variation of Chris ' speech.

I'm not being awkward I just want to understand. It probably doesn't make much difference really.

love, Jean x

Kevin_1 profile image
Kevin_1 in reply to Doglinton

Hi Jean

No, your not being awkward, but I am not a neurologist so I am reporting learned things with a basic grasp only.

Yes, it is the neurons that die. Neurons string themselves together as networks or in the case of a nerve more in lines. The brain is just a whole pile of the structured together with, guess what, Tau protein, or so a researcher said in a presentation I attended on PSP. Its when it gets laid down as a plaque that it does the damage. The speaker (researcher into PSP at UCLH) added that it appears that a gene fails to switch off to stop the protein being made when it is not needed.

I don't know why people with PSP get tired. Liz get's tired and her symptoms are worse when she is overtired and improve when she has a rest.

Her speech was very slurred a couple of years ago. She had to make quite a bit of effort to articulate words and she went to a lot of effort to do so. It's now much better. I guess her brain has relocated some of this function to healthy tissue. I cannot be certain. However there is a lot of evidence from other research that this does, or can, take place.

Here's a link which might make more sense:

medicinenet.com/script/main...

Doglinton profile image
Doglinton in reply to Kevin_1

Thanks, Kevin.

The way symptoms vary from day to day makes it so confusing to deal with.

I try to understand because I need to understand things. Chris doesn't.

Jean x

jillannf6 profile image
jillannf6 in reply to Doglinton

hi jean

igreee iiwiwth wa t u

have said

llo l jill

xxx

Doglinton profile image
Doglinton in reply to jillannf6

Hello, Jill

Glad to hear that. How are you doing at present ?

love, Jean x

jillannf6 profile image
jillannf6 in reply to Doglinton

m managing i say

ll jill

cxxx

daddyt profile image
daddyt in reply to Kevin_1

Well said. Caregivers should never underestimate the importance of exercise. There has been clinical evidence that exercise... even FE (forced exercise) in PD cases has increased mobility by 35 %. I know that daily exercise has made all the difference in my mobility, and I'm into my 3rd year with PSP. I appreciate the fact that many patients are further along in the disease, but if possible try to implement some kind of exercise program as it can minimize some of the rigidity we all experience.

Kevin_1 profile image
Kevin_1 in reply to daddyt

Thanks daddyt... I thought it was the case... good to hear from your experience.

Wishing you the best

Auddonz profile image
Auddonz in reply to Kevin_1

Kevin you are giving the best explanation I have heard yet Kudos!

Audrey (auddonz)

Kevin_1 profile image
Kevin_1 in reply to Auddonz

Thanks Audrey

I'm really just parroting the bits I could understand from a fw presentations I have seen.

But I'll have the kudos thanks ;)

Kevin_1 profile image
Kevin_1

Hi Jean

No worries, I'm the same, some understanding has helped me make sense of what is happening. Human brains love, or even need, to have explanations.

Yesterday afternoon Liz was in a very bad way, telling her sister (visiting) where the kitchen was, her sister has been visiting for years... and dwelling on previous losses they both shared... I thought she had suffered another step down... no, she was just very tired... today she is better... the PSP roller coaster.

Warmly

Kevin

Doglinton profile image
Doglinton in reply to Kevin_1

Hi, Kevin,

Yes. Chris was always a big newspaper reader. He hasn't concentrated enough for weeks. Then yesterday he was back to reading the Guardian eagerly. Hope it continues.

He isn't very good at doing exercises but I make sure I make him move and exercise all the time. It would often be so much quicker to do everything for him but I don't. I make him move whilst he can.

He often walks in little steps but, when I remind him, he can walk more normally.

I sometimes feel like a "nag" but I know its better for him.

love, Jean

Kevin_1 profile image
Kevin_1 in reply to Doglinton

That's great news.

Hey, your talking to Mister total Bossy Boots +. I keep having to check myself with phrases like, "Well that's my view, what's yours." But I think it sounds thin sometimes.

One of the very sad problems with PSP and any higher cognitive functioning illnesses, is that initiative and reasoned judgements get increasingly impaired. Its one of the things that I find hard. Dear Liz will come up with good ideas which often miss the point of what she is trying to achieve.

I could kick my over busy rushing self for the number of times I say, "No blah blah blah."

It is better for him I am sure.

Let's just keep doing the necessary...

Love, Kevin

Doglinton profile image
Doglinton in reply to Kevin_1

I know. Because I'm doing " motherly " things I find my self talking to him very " critical adult ". Then feel bad.

Yes, Chris comes up with ridiculous ideas as solutions to our problems. Its difficult to discuss them sensibly.

Wish I was more saintly !!!

Love, Jean

cabbagecottage profile image
cabbagecottage

No days the same no two hours the same even . All over Xmas John could even open his mouth to speak . It's June and he is speaking more clearly than he has for a long time . Does have his reading moments , I call them switched on or off times .

Auddonz profile image
Auddonz

Yes it is its the Tau protein. They are now doing studies withe patients who have PSP here in the U.S. I wonder why my hubby has good days then really bad ones.

Auddonz

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