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  1. Replies
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    Hi DB, welcome to our forums. Sorry that you’ve...

    Hi DB, welcome to our forums. Sorry that you’ve had to join us on this dreadful journey. It is hard on our partners/caters and other close family. Sounds like you had a very full physical life before...
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    Barry, about your shopping: Steve received his...

    Barry, about your shopping: Steve received his Tesco order Friday evening. He’d ordered that approx two and a half to three weeks earlier. He hasn’t yet been able to get another slot. I ordered from...
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    Good morning R, welcome to forums. I too donít...

    Good morning R, welcome to forums. I too donít know much about Kennedyís disease. You certainly have been on an unsuitable NHS journey . I hope that you can, as Ellie suggested have a sooner video...
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    Hi Graham, and thanks for asking. My husband and...

    Hi Graham, and thanks for asking. My husband and I have agreed to self isolate. The only time that he goes out is for an early morning stroll when nobody else has been about. He promised me that if...
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    That is good Doug. But the list already states...

    That is good Doug. But the list already states that it’s their for ‘other rare diseases.’ But stating MND specifically would be better. I registered a few days ago. Lynne
  6. Thread: Dreams

    by Lynne K
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    I have almost always remembered dreams and can...

    I have almost always remembered dreams and can alter what’s happening in dreams if it’s drifting into something scary or otherwise not what I’m comfortable with. I have mostly always dreamt of normal...
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    My husband had finally agreed to self isolate...

    My husband had finally agreed to self isolate properly since my earlier post.

    Graham I hope that your latest antibiotics do the trick. Lynne
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    Good morning Lizzie. Iím glad that you found this...

    Good morning Lizzie. Iím glad that you found this forum and that itís already helping you. That was a great decision to do voice banking so soon.

    Weíve been self isolating for 14 days now. We do...
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    Good morning Lizzie. I’m glad that you found this...

    Good morning Lizzie. I’m glad that you found this forum and that it’s already helping you. That was a great decision to do voice banking so soon.

    We’ve been self isolating for 14 days now. We do...
  10. Hi Sparkle, welcome. I cannot answer your...

    Hi Sparkle, welcome. I cannot answer your question. Even researchers arenít at the point yet to know one way or other. I have a faulty gene, C9ORF72 like a small percentage of MND sufferers . Other...
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    Terry, it’s good that your wife is careful. It...

    Terry, it’s good that your wife is careful. It was hard for me to get my husband’s initial cooperation to self isolate with me. But I got there 10 days ago for him to agree for us both to self...
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    Andy, we both get the bowel cancer screening...

    Andy, we both get the bowel cancer screening letter regularly. The Prime Minister and a medical specialist who was speaking with him yesterday (it was on the BBC News). They both talked about their...
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    I’m glad to hear that you pulled through Graham....

    I’m glad to hear that you pulled through Graham. The Government is talking about sending everybody a home testing kit to see who has already had Covid19 so that the scientists who are analysing this...
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    CC, there is a free flu jab for most people in...

    CC, there is a free flu jab for most people in UK. Essential health workers, vulnerable people, the over 60s all get invited. Others can request it from GP and get free or pay at a pharmacy. There is...
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    Hi, I second what Ellie wrote to you. You...

    Hi, I second what Ellie wrote to you.

    You asked how MND starts off. Well, we are all on different MND journeys but some common things like weakness in one or 2 of your 4 limbs but saying that...
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    Oops that was supposed to go to another thread. I...

    Oops that was supposed to go to another thread. I don’t know why it ended up here as I was reading the other thread. Strange indeed but maybe my dodgy fingers I guess. Lynne
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    If anybody wants a mask to protect from the...

    If anybody wants a mask to protect from the current Coronovirus then you want PPF3 spec. On Amazon some PPF 2 and 2.5 say that they’re suitable but don’t believe it. I did some research, ending up at...
  18. Thread: Access to work

    by Lynne K
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    About PIP. Having a pension won’t affect it. Good...

    About PIP. Having a pension won’t affect it. Good luck. Get your OT to contact the Blue Badge scheme on your behalf. Mine did after I had been refused. Then it arrived pretty soon afterwards. Lynne
  19. Thread: Access to work

    by Lynne K
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    I had help from Access to Work when I worked...

    I had help from Access to Work when I worked years ago. I had and still have a severe back problem. I also have RSI and nerve damage in my right arm making typing cause pain and unbearable using a...
  20. Thread: Douglas

    by Lynne K
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    Good morning Christie. I’m very sorry and sad to...

    Good morning Christie. I’m very sorry and sad to hear of Douglas’s passing but it certainly must be some comfort that he died peacefully in his sleep. You will be in my thoughts at this trying time....
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    Thanks Terry, the music sessions are in pubs,...

    Thanks Terry, the music sessions are in pubs, often crowded. So very worrying and so is Steveís hand shakes, Lynne x
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    My husband Steve goes to music sessions with his...

    My husband Steve goes to music sessions with his fiddle two or three times per week, occasionally four. I’m mostly at home but he could bring the virus home to me. He doesn’t get the potential risk....
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    Hi Niall, I’m sorry about your brothers nasty...

    Hi Niall, I’m sorry about your brothers nasty symptoms. I agree with Terry that it would be unusual for MND to start this way. Good luck for an appropriate diagnosis from the neurologist and helpful...
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    Hi Iain, best talk to your OT to refer you to a...

    Hi Iain, best talk to your OT to refer you to a service that provides aids. I’m sure that there’d be something to help. I saw gadgets like this at a local MND get together about a year ago. A...
  25. Thread: Mnd-smart

    by Lynne K
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    I too had an email Doug to update me that the MND...

    I too had an email Doug to update me that the MND Smart Trial has started in Edinburgh and they listed all of the English sites that will be taking part soon. It also stated that they’re looking for...
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