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  1. Replies
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    Hi all My husband saw his consultant this week...

    Hi all

    My husband saw his consultant this week ANC he said that bladder weakness can occur with pls.

    Lilylou
  2. Thread: Can I scream?

    by Lilylou
    Replies
    10
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    5,692

    Hi mamarics I've not been on the forum for a...

    Hi mamarics

    I've not been on the forum for a while. My husband was diagnosed with pls 10years ago. He had to retire because of a fall which broke his hip. Life for both of us is difficult. He was...
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    Hi terry As yet we do not have a team of...

    Hi terry

    As yet we do not have a team of specialists. Robert has had pls for nearly 9 years so progression has been very slow. His walking and speech seem to be deteriorating more although he is...
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    Thanks terry Think we will be needing some...

    Thanks terry

    Think we will be needing some support soon

    Lilylou x
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    St. Albans herts

    Hi all

    Not been on the forum for a while. Does anyone knowing there are any support groups in St. Albans Hertfordshire.


    Many thanks

    Lilylou x
  6. Thread: Hip op

    by Lilylou
    Replies
    2
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    1,381

    Hip op

    Hi all

    Have not been here again for a while.

    At last Robert has had his hip op. He's in a lot of pain but here's hoping everything will be ok. It's all a bit unknown at the moment. Physio...
  7. Thread: Thickner

    by Lilylou
    Replies
    5
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    2,090

    Thickner

    Morning all


    Does anyone use thickner for drinks and could recommend one. I have a print out about one called resource does anyone use it and what is it like.
    Robert is ok swallowing food but...
  8. Thread: Proud

    by Lilylou
    Replies
    13
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    5,476

    Hi terry Sorry perhaps i should have said....

    Hi terry

    Sorry perhaps i should have said. Hayley our daughter did the shhh silence speaks in July for her dad Robert who has pls. One of the things she felt more than anything not being able to...
  9. Thread: Proud

    by Lilylou
    Replies
    13
    Views
    5,476

    Hi all I should have said how frustrated and...

    Hi all

    I should have said how frustrated and angry she felt at times but more than anything......she felt lonely.

    Charles we did not know about the oxford thing and would appreciate the flier...
  10. Thread: Proud

    by Lilylou
    Replies
    13
    Views
    5,476

    Proud

    Hi all

    Don't often post but always keep up with everyone. Just a quickie. My daughter did the shhhh silence speaks in July. She zipped it for 5days and raised just over 1,700. The MNDA Thumbprint...
  11. Thread: Frustration

    by Lilylou
    Replies
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    12,597

    Hi joycie How strange! My husband Robert went...

    Hi joycie

    How strange! My husband Robert went to his GP yesterday for a review of his medication and to see if they could hurry up his hip replacement. His GP asked if he would be willing to meet...
  12. Replies
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    Hi all Have not been on here for a while. My...

    Hi all

    Have not been on here for a while. My husband Robert has PLS diagnosed approx 9 years ago. Saw his consultant in June who said he could go on for years as he is now. He walks unaided...
  13. Replies
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    498,053

    Dear Dave I have followed your thread for...

    Dear Dave

    I have followed your thread for nearly a year as have so many others. My thoughts are with you tonight. You have given so many of us strength and an understanding of what might lie...
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    Hi This is to say love to you and sharyn. You...

    Hi

    This is to say love to you and sharyn. You give us fellow carers such strength. You are truly amazing.

    Robert and I have had a very frustrating weekend. He tries so hard to do everyday...
  15. Replies
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    Dear Dave I too pop in every day to see how...

    Dear Dave

    I too pop in every day to see how you and your lovely Sharyn are doing. I can only say that you you are a wonderful man and what a fantastic couple you are. I only hope that I can be...
  16. Thread: Cough

    by Lilylou
    Replies
    3
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    2,071

    Oh and forgot to say no gas as yet but he burps...

    Oh and forgot to say no gas as yet but he burps very well.


    Lilylou x
  17. Thread: Cough

    by Lilylou
    Replies
    3
    Views
    2,071

    Hi terry Nothing talks for him as yet (only...

    Hi terry

    Nothing talks for him as yet (only me). This cough has started since having the flu and just prevents him from talking. He was never afraid of using the phone and always kept up a...
  18. Thread: Cough

    by Lilylou
    Replies
    3
    Views
    2,071

    Cough

    Hi all

    My husband Robert has had the flu. Although he is feeling much better he now gas a very strange cough that starts as soon as he starts to speak. He is unable to communicate properly...
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    Hi Charles Roberts dr was very good and issued...

    Hi Charles

    Roberts dr was very good and issued a DS 1500 our PIP came through within a couple of weeks and was backdated. Through this we now have a mobility car. We applied for a blue badge as...
  20. Replies
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    Hi dabchick Not a picnic for anyone with this...

    Hi dabchick

    Not a picnic for anyone with this rotten disease, but I don't think we have had as bad as some of you.

    Robert has just wobbled off to work for a couple of hrs . As I said he has...
  21. Replies
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    Hi Charles I have typed this email so many...

    Hi Charles

    I have typed this email so many times and lost it. So here I go again.

    Roberts consultant is Dr Kidd at Hertford County Hospital. We see him twice a year now. Robert had the...
  22. Replies
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    25,127

    Hi Charles Sorry to hear of your diagnosis. ...

    Hi Charles

    Sorry to hear of your diagnosis.

    Roberts experienced slurred speech and weakness in his hands and a year later, after a series of tests he was diagnosed with PLS. His consultant...
  23. Replies
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    25,127

    Hi all Like you dabchick I have always popped...

    Hi all

    Like you dabchick I have always popped onto the forum regularly to see how everyone is getting on but I rarely post. This is because my husband Robert does have a slower form of MND (pls)...
  24. Thread: OT Phone Call

    by Lilylou
    Replies
    6
    Views
    2,589

    Hi spring I think you did the right thing. At...

    Hi spring

    I think you did the right thing. At least now you have imformation and ideas for when the time eventually comes to make changes. If things are working well for Jim in the bathroom that's...
  25. Hi spring Hope your weekend was ok. I measured...

    Hi spring

    Hope your weekend was ok. I measured our wet room and it is slightly larger than your bathroom. The actual width of the shower is 46 inches. We have shower loo and wash hand basin. Don't...
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