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Thread: Father with PBP

  1. #1
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    Father with PBP

    Hi all.
    Friday 24th March at 10:43am my father received devastating results suggesting that he has PBP.
    The past few days in all honesty have been hell and very emotional for the family.
    I have decided to come on here to get some advice and just to talk.
    Hearing of those results left us all in shock. The sad thing is the doc didn't really have much to say other than someone will get in touch soon and jump on a website for research.
    We are seeking out for a second opinion but personally i feel lost as to what to do. I have spent the time researching and researching. I have contacted research teams but there is not really any interest in data. Stem cell programs have been of interest but I have no clue about that.
    Bit all over at the moment but would appreciate it to talk to people and to share each others thoughts and information.

    I'm determined 110% to do whatever it takes.
    Mike x

  2. #2
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    Welcome Mike

    Sorry to hear of your father's recent diagnosis. There are some threads on here about stem cell research you can review for further information about it, but I think it's still mostly in clinical trials.

    You found the right place here for great advice, much support, and knowledge by those who understand what you, and your family are experiencing.

    CCxx
    .

  3. #3
    Forum Member Barry52's Avatar
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    Hi Mike and welcome,

    I'm sorry to hear that your father has received the diagnosis. You have come to a forum with members who will offer advice and moral support. I follow research into the many programs of research throughout the world as it is a collaborative effort to find the cause and a cure for this disease. Rather than repeating my posts you might want to look under my profile Barry52 but you may find under the rules of MNDA you need 5 posts yourself before access.

    In summary there are a number of drug trials ongoing that show promise of slowing down the disease progression however we are still several months and maybe even a few years before coming to market.

    Best wishes
    Barry
    Iím going to do this even if it kills me!

  4. #4
    Forum Member Terry's Avatar
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    Hi Mike and welcome to the forum;

    I guess the whole family will be in shock for a month or two. A diagnoses such as this takes a while to get over and start to live again.

    Best wishes, Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  5. #5
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    Hi all.

    My sincere thanks for the replies. Trying to keep a balance mentally which we as a family are doing really well with. Especially my mum and sister. We have to cherish what we currently have and be thankful that we are all still together.
    I have found this site to be really useful and spoke with one of care lines. They are sending information in the post which is very kind.

    Again thank you.

  6. #6
    Forum Member lorret's Avatar
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    Hi Mike, scary how life can change in a second.
    My other half Tom was diagnosed with pbp 2 years ago. I read everything possible and frightened myself so much.
    We have learnt that no two people are affected in the same way. I found it helpful to have a basic idea of mnd, so you're prepared but then get on with life as best as you can .
    How is your father's mnd affecting him so far , as some only nip on the site now and again as they're still working. Lorret

  7. #7
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    Hi Lorret.
    Nice to meet you. I am very sorry to hear that your partner has pbp. How is he doing today?
    Currently he is experiencing speech issues along with difficulty swallowing. The symptoms have been ongoing for just over year now.
    Mentally he has been suffering from depression which i know is and can be part of it. He is also chesty at times and we are working hard to make sure that his diet good and vitamins are taken daily.
    I really wish that more is done to be made aware of this awful complex disease. I personally hate that I am researching now only that my father has it. He's an ex army 22 year serving, fit as a fiddle. I guess we all ask the same...Why?
    Sorry for the rant.
    What support are you getting may i ask?
    Thanks again Lorret.
    Mike.

  8. #8
    Forum Member lorret's Avatar
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    Ranting is what we all do here, as you are among a very exclusive club ( I think Terry used to tell new members this) . most of us here are guilty of the same ignorance, but it is rare and only do find out when a family member or friend is diagnosed.
    Tom's speech was the first thing affected, we thought he'd had a stroke. That was three years ago, he can still speak,but gets worse if tired.

  9. #9
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    Thanks Lorret.
    I hope you don't mind me asking but is Tom's symptoms currently only with his speech?
    I don't suppose you have tried this: https://emst150.com/

  10. #10
    Forum Member lorret's Avatar
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    Morning, Tom has been affected on his right side which is weaker now , he has no problem with breathing which is why we realized no two are the same.

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