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  1. Replies
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    115

    Hi Debbie, Reading your story this morning...

    Hi Debbie,

    Reading your story this morning brought a smile to my face as I could picture you and your husband watching the video. I know I shouldn’t be amused by your predicament but sometimes we...
  2. Thread: Anniversary

    by Barry52
    Replies
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    260

    Well done christoff and long may you continue....

    Well done christoff and long may you continue. Keep the wheels turning.

    Best wishes,
    Barry
  3. Thread: Motability

    by Barry52
    Replies
    12
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    1,016

    Hi Jacqui, Since you ask I will offer my...

    Hi Jacqui,

    Since you ask I will offer my opinion based on extensive research.

    Ask yourself the question what will be the main purpose of your vehicle. Do you want freedom to go anywhere or just...
  4. Thread: MND and Covoid

    by Barry52
    Replies
    5
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    363

    Hi Matthew, Generally the frequency of visits...

    Hi Matthew,

    Generally the frequency of visits to an MND specialist centre is quarterly and in the community we have the care team i.e. physio, speech and language, dieticians and OT. COVID has...
  5. Thread: This forum

    by Barry52
    Replies
    20
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    1,455

    Hi Matthew, I’m sorry to hear that you are...

    Hi Matthew,

    I’m sorry to hear that you are feeling disillusioned with the forum so soon after joining. Please try to understand that some of the members are carers who have a full on time looking...
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    Hi Matthew, Yes it is available as a liquid so...

    Hi Matthew,

    Yes it is available as a liquid so I can suggest you discuss with your GP or consultant.

    Best wishes,
    Barry
  7. Happy birthday Matthew, I’m with Doug on this...

    Happy birthday Matthew,

    I’m with Doug on this issue although I am convinced that MND has reduced my capacity for alcohol and I can fall over sober.

    Best wishes,
    Barry
  8. Thread: Motability

    by Barry52
    Replies
    12
    Views
    1,016

    Hi Beemer, Motability are currently not...

    Hi Beemer,

    Motability are currently not accepting new orders as the manufacturers were due to publish new prices on 1st April but have not done so due to coronavirus. Here is the statement from...
  9. Replies
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    537

    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...
  10. Replies
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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...
  11. Thread: Teeth Brushing

    by Barry52
    Replies
    9
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    885

    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
  12. Replies
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    2,116

    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...
  13. Replies
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    2,914

    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...
  14. Replies
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    1,801

    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
  15. Thread: Moving house

    by Barry52
    Replies
    9
    Views
    1,256

    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.
    ...
  16. Replies
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    17,987

    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...
  17. Replies
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    17,987

    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...
  18. Replies
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    17,987

    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.
  19. Thread: Nuedexta

    by Barry52
    Replies
    9
    Views
    1,890

    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
  20. Thread: Nuedexta

    by Barry52
    Replies
    9
    Views
    1,890

    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...
  21. Thread: Nuedexta

    by Barry52
    Replies
    9
    Views
    1,890

    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...
  22. Thread: Hi

    by Barry52
    Replies
    10
    Views
    2,282

    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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    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
  24. Replies
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    17,987

    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...
  25. Replies
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    94,974

    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...
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