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  1. Replies
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    Hi Helen and welcome to the forum ; I have...

    Hi Helen and welcome to the forum ;

    I have mainly PLS and their are quite a few of us on the forum.

    It did affect the areas that you have mentioned within two years but not to a great extent. ...
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    Thanks for the update Dis, I was hoping that...

    Thanks for the update Dis,

    I was hoping that co would be improving. Hope your OK in there.

    Love Terry
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    Hi rafiksq and welcome to the forum, I don't...

    Hi rafiksq and welcome to the forum,

    I don't know what to say without blaspheming. You and your wife have been through a lot in the last couple of years.

    I must say that it is unusual to lose...
  4. Hi K and welcome to the forum; Sorry to hear...

    Hi K and welcome to the forum;

    Sorry to hear of your husbands problems. It sounds like your husband NEEDS a NIV now over night time. It should greatly increase his quality of life and energy...
  5. Thread: Carol

    by Terry
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    230

    Hi Carol and welcome to the forum; Sorry to...

    Hi Carol and welcome to the forum;

    Sorry to hear of your journey and your husbands passing in November.

    I do wonder how it has progressed since Diagnoses. Hospices are normally good places for...
  6. Thread: Good morning

    by Terry
    Replies
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    Hi Dina ; Your post made me feel better and...

    Hi Dina ;

    Your post made me feel better and have a smile this morning.

    I can't offer much in the way of support but try to do the best you can and smile even though you are not smiling inside....
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    Hi Gloslad, I can understand her worries. ...

    Hi Gloslad,

    I can understand her worries. Just hope that it is something else.

    Best wishes, Terry
  8. Thread: Pinkelle 💕

    by Terry
    Replies
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    479

    Thank you for letting us know, V's mum; ...

    Thank you for letting us know, V's mum;

    Eleanor bought colour to the forum and she will be sadly missed by many of us, her family and friends.

    No one has a easy journey with Mnd but Pink had...
  9. Replies
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    Hi Dis; It sounds like they have put the right...

    Hi Dis;

    It sounds like they have put the right switch on now. I would expect (5.1) after the first 8 hrs night nearly 3 weeks ago, but hey, what do I know.

    Great wedding anniversary then, I...
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    Hi Ann; I have a smaller van type WAV, most of...

    Hi Ann;

    I have a smaller van type WAV, most of them have 3 seats and take a wheelchair. As Dina says, you don't want to be stuck behind the rear seats but most of them allow you to be beside or...
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    Hi Dis; I think that's what Ellie's after. ...

    Hi Dis;

    I think that's what Ellie's after. Hope you are keeping well and entertained. At least they have not given you oxygen like two of our friends have had over the last year.

    Love Terry
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    Hi Diamond and welcome to the forum; I'am no...

    Hi Diamond and welcome to the forum;

    I'am no specialist but I don't think I've hear of Mnd progressing in that way at the start but they can progress to affect them areas.

    I would pester your...
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    It is applicable at the moment ...

    It is applicable at the moment

    https://youtu.be/OuUpOerfT2I
  14. Thread: hi

    by Terry
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    Hi Maz, Hope today is going well. If you...

    Hi Maz,

    Hope today is going well.

    If you want any help with the forum, just ask

    Love Terry
  15. Thread: hi

    by Terry
    Replies
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    1,019

    Hi Maz, It is uncommon when it's colder. I...

    Hi Maz,

    It is uncommon when it's colder. I think it's down to poor circulation, in the winter I have a blanket tucked in over them and sometimes a hot bag that's warm.

    Hope that you get them...
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    Hi Vix; I thought that there was so much...

    Hi Vix;

    I thought that there was so much information in the above posts that it scared you away.

    Love Terry
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    Hi Vic and welcome to the forum ; Sorry to...

    Hi Vic and welcome to the forum ;

    Sorry to hear about your husband's diagnosis and problems.

    There are around eleven types of Mnd so it would probably be good to get it narrowed down a bit.
    ...
  18. Thread: Falling !

    by Terry
    Replies
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    Hi Debbie, Sorry to hear about your fall and...

    Hi Debbie,

    Sorry to hear about your fall and subsequent situation. Beware of strong pain killers as they normally make people Constipated and that can be dangerous.

    Do they know what what is...
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    Hi Andy ; Your wife is right, if you have limb...

    Hi Andy ;

    Your wife is right, if you have limb onset ALS you would not be walking much at all.

    I have a slow type of Mnd and I couldn't walk unaided after two years.

    Mnd has many symptoms...
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    Hi Tony; You could contact Mnda Connect,...

    Hi Tony;

    You could contact Mnda Connect, explain the situation and ask them to give your email and phone number to Sammy 's wife. They must have their details as they gave a contribution towards...
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    These are some of the one's that some of us know;...

    These are some of the one's that some of us know;

    https://www.youtube.com/watch?v=BnRsaHXHznQ

    https://www.youtube.com/watch?v=5BmEGm-mraE
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    Hi Tony; Sammy's wife has not logged on since...

    Hi Tony;

    Sammy's wife has not logged on since the 10th, I guess she will soon.

    I know quite a bit about Genie chairs if you have any general questions, you are welcome to PM me.

    Love Terry
  23. Thread: Clothing?

    by Terry
    Replies
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    Hi Ellie, Thanks for the links and I am sure...

    Hi Ellie,

    Thanks for the links and I am sure that they will be useful for some people. The second link does make elastic waist ones as well.

    Love Terry
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    Hi vicky, It's sort of a buy product, it's air...

    Hi vicky,

    It's sort of a buy product, it's air moving around the stomach and intestine.

    Probably caused by, eating not having a good posture, gulping air into it, not moving around or standing...
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    Hi Dis, I would have thought that they would...

    Hi Dis,

    I would have thought that they would have to do a RIG feeding tube opp because of your breathing. I think that still involves a very small tube going up your nose but I would have thought...
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