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Thread: How

  1. #21
    Forum Member Raj's Avatar
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    Hi ccinjersey,
    It's a hobby. Professionally I am an engineer in electronics and communications. I retired from Indian parliament. I quit my job due to this MND/ALS.

    I see a world on the edge of a blade. Without balance, it will fall.

  2. #22
    Forum Member Raj's Avatar
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    Hi ccinjersey,
    I have had many hobbies in my life, but nothing comes close to my love for wildlife photography. The beauty and also the curse of wildlife photography is that one cannot change almighty Nature. Nature is really the only place left where we can have solitude and see the truth. Nature does not lie. we are still cavemen at heart. The basic wiring in our brains and how we interact are the same as thousands of years ago. Nature is where we still belong. That is why we all enjoy a walk in the woods, gazing at the stars, watching a sunset, being on a beach, or going camping....
    Last edited by Raj; 16th January 2018 at 08:31.

    I see a world on the edge of a blade. Without balance, it will fall.

  3. #23
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    Barry , my husband started having speech issue's over 2 years ago. We saw numerous doctor's , the last 4 neurologists.The first said he thought it was something with his tongue, and to come back in 6 months.He lost his voice over a year ago and started having swallowing issue's. They all said he had PBP .The strange but wonderful thing is he has no other issues. He has spent the last 3 days doing heavy yard work. Is this normal for some patients? Sorry for the long and rambling post.

  4. #24
    Forum Member Dude's Avatar
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    Hi WOJ My mnd pbp started with a very slight lisp. On a visit to hospital for an annual check up for an unrelated heart condition, SVT, the stand in consultant was a neurologist. He asked me how long I had the lisp, I told him about 3 months, he then took a lolly stick and pressed my tongue down. Just like in the movies, I asked him for worse case scenario and he told me, mnd. It took another 18 months to get official diagnosis. Nothing is normal with mnd, I carried on working until I couldn't climb the stairs to my office. It's called stubborness or denial, both not helpful. 69 years old diagnosed 2008. Live on Ensure shakes, tea, coffee and juice all through a straw. Take care. Dude.

  5. #25
    Forum Member Ellie's Avatar
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    Oct 2012
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    Hi Jim's wife.

    There is no normal. Jim may have an isolated form of PBP which affects bulbar regions only, with no involvement of other regions.

    Time will tell...

    Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  6. #26
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    Jan 2018
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    Dude , that's fantastic .When the doctor told us PBP it was a huge blow.Everything I've read about it was horrible. Do glad you are doing so well.Have a nice Sunday . Dee

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