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Thread: Hello

  1. #1
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    Post Hello

    Hello, my husband has PBP, it’s been 6 years now. It has been a journey that has changed us all. As a carer, finding time to post hasn’t been easy. This is my first time.
    Finding the words to say, hasn’t been easy. My husband of 29 years, is a different man, I love him so much and it hurts seeing him unable to do the things he loves so much. We have had to learn how to love again in a different way. We have 3 grown children, who miss their daddy’s voice.
    Posting today, hasn’t been easy.
    But I needed to say, my husband has MND, and it has changed our world.
    What has kept up, is our faith in God.
    Have we had questions as to Why? Yes we have!
    Has it changed our faith No!
    We have had many challenges
    My husbands life has been hanging by a thread, not sure if he would return home...
    We’ve been tested by the health care system
    My husband still remains at home, which is where he wants to be with Family
    We have 24hr care support in place, which wasn’t easy to get...
    I’m not sure what else to say, I have finally come out, we never thought we would be together so long after the diagnosis, with the many complications my husband had.
    Thank you for reading
    Last edited by M4GK; 20th February 2018 at 22:22.

  2. #2
    Forum Member Streetwise's Avatar
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    welcome

  3. #3
    Forum Member Barry52's Avatar
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    Hello and welcome M4GK.

    It must have been a huge struggle for you to deal with this alone but now that you have found us you will get lots of moral support. This forum is a great place to “offload”.

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

  4. #4
    Forum Member Streetwise's Avatar
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    can I ask if BPB is related to motor neurone disease I'm autistic and always wanting to know if there is something about motor neurone disease I didn't learn in the past .
    i've put in the initials on the search engine and all that came up was pseudo Bulbar palsy, it wouldn't recognise the initials you had written -Wikipedia didn't show anything on there site.

  5. #5
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    Hi Streetwise,

    I think it's PBP - progressive bulbar palsy which is a type of MND.
    Hope I'm right!

    Bern

  6. #6
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    Hi streetwise, yes, my husband has Progressive Bulbar Pulsay, my typo

    Thank you

  7. #7
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    Thank you

    Thank you to everyone who replied to my post.
    It wasnít easy for me to post.
    Many people may not understand why I mentioned God
    Whilst dealing with something thatís so cruel
    There wasnít anyone to turn too
    People thought I was in denial
    And that I didnít want to accept, what I could see before my eyes
    Loosing fragments of my husband each week
    I could see exactly what MND was doing to my husband and our family
    When no one would listen to me
    I always had someone close by (GOD)
    Who didnít have any time constraints and would
    Listen to my many questions and anxieties
    This is why my relationship with God has been my comfort

    MND is very much apart of our every day life, there is no getting away from it
    My husband has lived downstairs for 5 years and I love upstairs
    His care had grown and his extension has allowed him to remain at home
    The package is challenged all the time, we just try to stay focused and take one day at a time

    Thank you for reading and all the encouragements, I have found a place to speak and hopefully get some
    Advice and words of encouragement

  8. #8
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    Thank you Barry, I have read post on and off over the years, but was never able to share our story
    My husband uses a eye gazer, which can be time consuming at times, would love him to be able to share but it would be a lot of effort so I hope with me sharing, I will be speaking for both of us.

  9. #9
    Forum Member Streetwise's Avatar
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    thank you !progressive is a new word to me !they said my mother was pseudo bulbar palsy !now I will have to explain the autism forum that she doesn't have ALS , Wikipedia says it is slightly different from pseudo bulbar palsy .

  10. #10
    Forum Member Streetwise's Avatar
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    I understand why you mention G~d my mothers Faith was stronger than mine ,she still prayed for healing .

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