First post

Hi all been a member for about 18 months when my wife was first diagnosed at only 58 so young

Sue has been getting progressively worse in some ways but can be sharp as a button in others .the falls are more frequent, incontiness and weight loss is starting to happen but lucky not been hospitalised

The main reason for this post was for our three children I say children in their thirty's and forty's have to go Monday for there gene test to see if they are carriers

Can't imagine how they are feeling although there not showing it

Broken the ice by the first post but think the forum is agreat site and some brilliant comments


13 Replies

  • Thank you for posting this, I've never heard of this test. Is it something new?

    Hope all goes well for them all

    Love Debbie xxx

  • Hi, welcome. Glad you have finally posted. I get so much from posting on here, it's somewhere I can vent my anger, pour out my worries to people, who I know will understand. All my knowledge of PSP has come from this site, I have been able to prepare myself for various new aspects of the disease and know exactly where to go, the minute they arise.

    As to this test, I have never heard of it. I had always presumed that it wasn't genetic or heredity, from what the professionals have said. Although, my personal thoughts are, that a person is born with this disease, but because it is so slow, doesn't start showing its face until late in life. This would therefore back up the genetic theory. Perhaps, this is the latest thoughts and they are starting to look for the gene.

    Be interested to hear the results and any information they give your children. I will keep everything crossed, that they don't find anything.

    Lots of love


  • Thanks for your reply will post as soon as we know anything

  • hear hear heady thanks for your comments I have thought on similar lines matey peter jones q.l.d. australia

  • Hi 12-35

    Sorry to have to welcome you here, but welcome.

    You know us all here I am sure. It's great you have posted.

    We see Prof Huw Morris at Queen Square in London. I don't know where you are so I will add he is the top man in the department and Queens Square is an international centre of excellence. PSP is his main area of study. Yes, we are lucky in some ways.

    Anyway, he says that there is no known genetic cause to PSP / CBD so I am quite surprised that your children are going for a gene test.

    Would you ask specifically what gene they are looking for? What the test is? I would be very interested.

    Wishing you all the very best.


    Edit - That should read - "No known inherited genetic cause."





  • Welcome,

    I have never heard of this test and from all my reasearch and talking to specialists they are telling me that it is not genetic. But if there is more research being done where you are I would love to read about it.

    If she is falling more frequently, remove all area rugs from your home. We did this and it helped with falls as my mother would freeze and could not life her feet as she did before CBD struck.

    From reading Kevins reply you are in very good hands in London, and will keep my fingers crossed for your children.

    Big hugs to you Sue and your children


  • I would also like to know what the test results are as I too have three children!

  • Hi my husbands sister,aunt and cousin are also going for tests we are in Birmingham he is also getting worst with as you say falls incontiness and weight loss and now for a new thing vomiting after meals he is 53 xxx

  • I am under the impression that there is no test available for PSP, so I would be very interested in knowing the named. I have PSP and two adults children . Good lick to jou . Please let me know.. thank you, Mary B. I live between South Lake Tahoe and San Francisco.

  • Firstly welcome to this site you will find it so informative and supportive. Again like most of the other guys who have replied I wasn't aware of any strong genetic links but maybe there! Many articles seem to imply that it may be genetic along with environmental influences. Be a good thing when they find what triggers this horrid disease.

    Please keeps us updated on the tests.

    Let everyone Kate xx

  • As with everyone else i would be very interested in the result of the gene test. I have three "children" so would send them if it panned out. Marie

  • Hi 12-35, like others we were told it wasn't generic, so I will be interested in the outcome of the test. Best wishes, Nanny857

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