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Type: Posts; User: Stonehengeman

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    Hello Tess, I was diagnosed with PBP in Jan 2018....

    Hello Tess, I was diagnosed with PBP in Jan 2018. At that time I could swallow without too much difficulty and my speech was still OK as long as I spoke slowly. I have now lost my speech but can...
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    I cannot get on with the apps. I use a Boogie...

    I cannot get on with the apps. I use a Boogie board which I find much easier in a face to face situation.
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    I am 80 years old. I have Progressive Bulbar...

    I am 80 years old. I have Progressive Bulbar Palsy diagnosed Jan 2018 I have lost my speech but can still eat, although it takes me twice as long as it would have done 3 years ago. I sometimes have...
  4. Yes I had fasciculations for years in both legs....

    Yes I had fasciculations for years in both legs. However it is Progressive Bulbar Palsy that was diagnosed in Jan 2018 and to date I have had no problems with loss of leg or arm mobility.
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    Thanks. As it has turned out I had my RIG...

    Thanks. As it has turned out I had my RIG inserted earlier than necessary. But I had been warned not to leave it too late. Nothing is clear about MND. Every person is different. I have had...
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    Thank you for taking the trouble to reply. Having...

    Thank you for taking the trouble to reply. Having now read your details my sympathy goes out to you. In some ways my MND problem is nothing as compared to you. I have had 75 years without Pr. Bulbar...
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    Thanks David, I have only just caught up with...

    Thanks David, I have only just caught up with your thoughts. I will write more later. Stonehengeman.
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    I have tried twice to respond to you (Ellie) but...

    I have tried twice to respond to you (Ellie) but could not get the reply to go. I was entering a short message and saying that I do not like the MNDA website as i do not find it user friendly and one...
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    Thank you Ellie. I can see that you are a regular...

    Thank you Ellie. I can see that you are a regular contributor to the Forum. To answer some of the points you mention.
    1. I do wonder whether the tube is too loose. It swivells round quite a lot. It...
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    I like David R was diagnosed with Progressive...

    I like David R was diagnosed with Progressive Bulbar Palsy. I had noticed that my speech was deteriorating some 4 or 5 years ago, but it was not until I moved house to Kegworth and signed up to the...
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