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  1. Replies
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    Old dog new tricks. Whilst researching talking...

    Old dog new tricks.

    Whilst researching talking books for my mother who is partially sighted I discovered a function on my iPad which I was not aware of. It basically allows a document or email to...
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    Hi Matthew and welcome. I hope to offer you a...

    Hi Matthew and welcome.

    I hope to offer you a positive message. My symptoms began with speech variations 8 years ago and I was told bulbar onset MND. Later on I was informed that I have the subset...
  3. Thread: Teeth Brushing

    by Barry52
    Replies
    9
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    605

    Hi Tess, You should find this information...

    Hi Tess,

    You should find this information helpful.

    https://static.mndassociation.org/app/uploads/2019/01/18123104/11B-Mouth-care.pdf

    Best wishes,
    Barry
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    Hello and welcome Andrew. Sorry you find...

    Hello and welcome Andrew.

    Sorry you find yourself here but you can be sure of good advice and morale support. I was also bulbar onset which eventually turned out to be the MND sub division PLS. We...
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    Hello Roy, I would like to point out for the...

    Hello Roy,

    I would like to point out for the benefit of our UK members that the group you mentioned are based in the USA and Canada and I assume that the time of the next session is 6 or 7 hours...
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    Welcome David to this forum. You will find...

    Welcome David to this forum.

    You will find support and advice from many of our members. Your positive attitude will help you deal with the challenges ahead.

    Best wishes,
    Barry
  7. Thread: Moving house

    by Barry52
    Replies
    9
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    1,061

    Hi Andy, Good news at last and good luck with...

    Hi Andy,

    Good news at last and good luck with the move. Remember to avoid any unnecessary contact and don’t try to help as is the temptation when someone else is handling your precious things.
    ...
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    17,213

    Hi Graham, I sorry to hear that you are still...

    Hi Graham,

    I sorry to hear that you are still suffering from pneumonia repeatedly. I hope the stronger antibiotics help. In what way does your MP help? In the past when I have contacted my MP...
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    17,213

    Like buses they all come together. Waited 3...

    Like buses they all come together.

    Waited 3 weeks for a priority delivery slot and I now have offers from Asda, Sainsburys and Waitrose having finally been classed as extremely vulnerable. I can’t...
  10. Replies
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    17,213

    Hi Ellie, This is an absolute scandal to make...

    Hi Ellie,

    This is an absolute scandal to make people with MND go through an assessment of need. Haven’t we gone through enough assessments in our journey with this disease? Written off again.
  11. Thread: Nuedexta

    by Barry52
    Replies
    9
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    1,634

    Okay ladies, guilty as found. I do use my walker...

    Okay ladies, guilty as found. I do use my walker everywhere but I have to let go occasionally and this is my downfall (probably wrong choice of word).

    Love and hugs,

    Barry x
  12. Thread: Nuedexta

    by Barry52
    Replies
    9
    Views
    1,634

    Hi Jacqui, I already take citalopram which has...

    Hi Jacqui,

    I already take citalopram which has some benefits with lability and mood for me. I had hoped that nuedexta would improve my speech as reported by some users but the trade off affecting...
  13. Thread: Nuedexta

    by Barry52
    Replies
    9
    Views
    1,634

    Hello Jacqui, Ellie is indeed correct to...

    Hello Jacqui,

    Ellie is indeed correct to recall that I tried Nuedexta. I had a video call with Barbara Buyer who arranged supply of the generic form of the drug. A 2 month supply cost me...
  14. Thread: Hi

    by Barry52
    Replies
    10
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    2,013

    Hello and a warm welcome Diddly, As Ellie says...

    Hello and a warm welcome Diddly,

    As Ellie says it is usual for a neurologist to wait a few years before categorising MND into the specific subtype PLS. I had a similar diagnosis within 9 months of...
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    1,151

    Hi Peanut, I used a Senheiser headset...

    Hi Peanut,

    I used a Senheiser headset microphone when I recorded my voice. You can get them from amazon for around 35.

    Best wishes,
    Barry
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    Hi Miranda, I received the same email today so...

    Hi Miranda,

    I received the same email today so I guess that the government updated list has been sent to retailers. You may have received a letter from your GP confirming you are at extreme risk...
  17. Replies
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    92,941

    Hi Doug, I did the LA to Chicago route 5 years...

    Hi Doug,

    I did the LA to Chicago route 5 years ago but I took the easy option by using Amtrak. 4 days and nights on a train but wow, did we see some sights! Can’t get that at 35,000 ft.

    My...
  18. Replies
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    92,941

    Thanks for the trip down memory lane Graham....

    Thanks for the trip down memory lane Graham. Another song that got my attention as a 19 year old. Sad that Jim Morrison died one month after it’s release, albeit self inflicted due to drug abuse.
    ...
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    Hello Richard, This news has deeply upset me...

    Hello Richard,

    This news has deeply upset me however I am pleased to hear that Terry’s wife Linda was with him at the time. Words fail me at present but please pass on my condolences to Linda and...
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    Thanks for the link Doug. I found the...

    Thanks for the link Doug.

    I found the discussion informative and reassuring. I support the final point stressed by each professor was the need to have a discussion with family about advanced care...
  21. Replies
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    17,213

    Thanks for the update Richard. I am praying for...

    Thanks for the update Richard. I am praying for Terry and I hope he pulls through. I’m sure everyone on this forum sends their best wishes to a man who over the years has given hope and encouragement...
  22. Replies
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    17,213

    I have received an email from Asda saying they...

    I have received an email from Asda saying they have me registered as a vulnerable person. I have placed an order but delivery is Saturday 18th April. Meanwhile a local butcher I use has started...
  23. Replies
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    46,127

    Hi Ellie and Doug, I read through the assembly...

    Hi Ellie and Doug,

    I read through the assembly manual and on several pages it says requires 2 people to assemble. I wish it had said 2 people to unpack as my chest and arms ache now. It will have...
  24. Replies
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    46,127

    It took me all morning to unpack it so now I have...

    It took me all morning to unpack it so now I have to assemble it. Let’s hope it is not like IKEA furniture with a bit missing.

    Barry
    1133
  25. Replies
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    46,127

    My good thing today was that my exercise bike...

    My good thing today was that my exercise bike arrived. Now I have to get it out of the box and assemble it. More news later.

    Barry
    1132
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