2nd opinion

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!

9 Replies

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  • 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

  • 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

  • Thanks for that Tim.

    I didn't know about age and aggressive.

    I guess it makes sense.

    Best

    Kevin

  • Great articles Kevin! Thanks!

    s

  • 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!

  • 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

  • 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

  • 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!

  • 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

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