2nd opinion : Okay, so my dad got a 2nd... - PSP Association

PSP Association

9,729 members11,604 posts

2nd opinion

jmkdmk profile image
9 Replies

Okay, so my dad got a 2nd opinion today, which turned out to be a good thing! I was not there (wish I would have been, cuz I would have asked a lot more questions). This doctor, agreed with it being PSP, but perhaps a different type- because his progression is slower than the "regular" PSP- not sure how to word this stuff as it is all knew to me. So there is a sense of relief as she indicated he should have several more years before too much progression.

What I want to ask you guys/gals, is what other types are there? I did some research a while back and found some, don't remember where on-line I did, but thought you guys/gals may know right of the top.

Again, appreciate any input! Thanks!

Written by
jmkdmk profile image
jmkdmk
To view profiles and participate in discussions please or .
9 Replies
Kevin_1 profile image
Kevin_1

Hi Jmkdmk

What wonderful news!

Here is my understanding from our neurologist who specialises in PSP:

PSP is caused by a protein plaque being laid down over the supranuclear part of the brain. This is the part of the brain which does the executive functions such as speech, eyesight, balance, fine motor movement and mental processing. Processing is the 'thinking' and 'working things out' if you like.

The protein being laid down is the Tau protein which normally gives the brain its structure conveys nutrients and oxygen etc. Except in this case the gene which control it does not 'switch off' properly and the protein is laid down chaotically as a plaque. The part of the brain immediately beneath that plaque is smothered and dies.

Exactly where that plaque is laid down in each individual at a given time determines which functions are diminished and then lost to a large degree. The faster it is laid down then the faster the illnesses progression.

So there is some variation from person to person, but the core symptoms seem to be fairly standard.

Here are two links which might help. They are to my dropbox ands so they are clean and safe.

healthunlocked.com/api/redi...

healthunlocked.com/api/redi...

I do hope this helps a little.

I am sure there are others here with more experience/knowledge than I who will add more.

The illness is not the end. There are many good experiences to be shared yet!

Wishing you and your Dad the very best.

Warmly

Kevin

Amilazy profile image
Amilazy in reply toKevin_1

Well put Kevin. There has been a change in the data as more diagnosises made, the old average was pretty wide but it does seem from reading this site that PSP is more aggressive the younger the patient.

Tim

Kevin_1 profile image
Kevin_1 in reply toAmilazy

Thanks for that Tim.

I didn't know about age and aggressive.

I guess it makes sense.

Best

Kevin

Wishdoctor profile image
Wishdoctor in reply toKevin_1

Great articles Kevin! Thanks!

s

abirke profile image
abirke

All I can say is that's great! Oh and I just read K1's stuff all I can say is read that! very well said K1!

daddyt profile image
daddyt

Hello,

I've read your post and a few of the replies that have been put forth. I have PSP-P, the hyphenated P is indicating Parkinsonian? As I understand it researchers are breaking PSP down into further sub-groups as so many symptoms are overlapping with other neurodegenerative diseases. In my case I experience tremors, not quite to the extent of PD patients. These tremors are not usually associated with PSP but in rare cases they can happen. I think that there a couple of links posted already which should be helpful. I also have progressed at a slower rate... everyone is different. I'm 3 years into my diagnosis. Daily exercise has made all the difference in my mobility and helped with slowing down the PSP according to my movement disorders specialist. Clinical trials at the Cleveland Clinic have proven that exercise even if forced (FE) has shown to increase mobility and reduce tremors by 35% in PD patient. Keep in mind that PSP and PD have overlapping symptoms and it only stands to reason that PSP patients could benefit from the same kind therapy. If your father is able to, get him exercising. Hope my and others information proves to be helpful.

Daddyt

Kevin_1 profile image
Kevin_1 in reply todaddyt

Thanks for the info Daddyt

Liz went down the exercise route on a hunch and it has helped her a lot. She still needs guidance whilst walking, but she is more able to move with support. She is 'brighter' in mood and has more interest in things.

Yes, and it stopped her twitching legs too.

This most definitely is helpful.

Thanks again

Kevin

jmkdmk profile image
jmkdmk in reply todaddyt

All the input has been great, but yes, this more what I am looking for. Breaking down the PSP into different sub groups. I will need to research that more, and tell my father to get moving! Thank you!

Kevin_1 profile image
Kevin_1 in reply tojmkdmk

Hi jmkdmk

Please come back and share anything even vaguely useful. You will have an eager audience I am sure.

Wishing you both the best

Kevin

Not what you're looking for?

You may also like...

My wife has PSP and there may not be a cure for PSP, but there is a drug that slows the progression

My Name is Andy and my wife has PSP. We belong to a user group in Phoenix, AZ USA, My wife is a...
andyniem profile image

Carers dilemma responses

Thanks guys and gals for all your comprehensive responses , they really do help. There are so many...
Georgepa profile image

Hi-Dad diagnosed with PSP

Hi all. Glad to have come across this forum. My dad has unfortunately been misdiagnosed- he was...

First Symptom Survey Comment by Strelley

Again, thank you everyone for replying to my survey. I trust you have read the experience of others...

Slow Progression PSP-P and MR Parkinsonism index predicts vertical supranuclear gaze palsy in patients with psp-parkinsonism

Hi. well we went to neuro opthalmologst and after having a look said what made them make a...
daffodil48 profile image

Moderation team

HelenPSPA profile image
HelenPSPAAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.