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  1. Thread: RIP Fru's Ed

    by Fru
    Replies
    14
    Views
    1,793

    Thank you my forum family for your kind words and...

    Thank you my forum family for your kind words and thoughts for Ed and I. Since February we have been having some difficult days and this time, Ed just wasn't strong enough to fight it. He was okayish...
  2. Thread: RIP Fru's Ed

    by Fru
    Replies
    14
    Views
    1,793

    RIP Fru's Ed

    I am sorry to have to tell you that my gorgeous, lovely and brave Ed passed away peacefully at home this afternoon. He became very unwell on Friday night and over the weekend we had many district...
  3. Thread: RIP, Rumba

    by Fru
    Replies
    6
    Views
    1,842

    This is very sad news about Andrea. We used to...

    This is very sad news about Andrea. We used to look out for her at the Cambridge meetings. Our thoughts at this time go out to Jay and all their family.
    Fru xx
  4. Replies
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    Hello Kayleigh It's been a tough week. Molift...

    Hello Kayleigh It's been a tough week. Molift raiser wasn't enough to support Ed and he slipped through. Used the Elk with a friend but Ed gets in terrible panics. Arranging for an Xray. Bed bound...
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    I am really sorry to hear this sad news and my...

    I am really sorry to hear this sad news and my thoughts are with you
  6. Replies
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    Hi Ellie, Yes, things have been a bit difficult!...

    Hi Ellie,
    Yes, things have been a bit difficult! Ed is just exhausted and low but this goes in phases. The Molift sit to stand, is fine for the time being I think but Ed has to psych himself up for...
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    Hi Ellie, Well, to be honest, nothing is...

    Hi Ellie,
    Well, to be honest, nothing is improving at the moment. Ed's hands arms and upper body are affected and he is becoming weaker. We are going for respiratory check up again soon. Legs are...
  8. Replies
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    Yes Terry Asthma like side effects were on the...

    Yes Terry
    Asthma like side effects were on the list. This was a problem but it is winter and everyone with MND is different. It's hard to tell but we stuck to our agreement. The tablets didn't seem...
  9. Replies
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    8,894

    Here's my report on Ropinirole for 'restless...

    Here's my report on Ropinirole for 'restless legs'
    Ed tolerated 0.25mg with nothing to report, then 0.50mg and that was okay for about 3 weeks with still nothing to report, then the chills set in...
  10. Thread: Broken record

    by Fru
    Replies
    39
    Views
    7,525

    Hi Barry Really sorry to hear you have had a...

    Hi Barry
    Really sorry to hear you have had a fall. It just happens, I know. Do you think you will be joining the black eyes club like us?! One thing really good to hear is that you will be away for...
  11. Thread: CuATSM ?

    by Fru
    Replies
    26
    Views
    4,436

    Hi Ellie, I too am so glad you posted that....

    Hi Ellie,
    I too am so glad you posted that.
    Love Fru
  12. Thread: personal alarms

    by Fru
    Replies
    11
    Views
    3,220

    Hi, Sorry to hear of your husband's fall. This...

    Hi,
    Sorry to hear of your husband's fall. This has happened to us on several occasions. I can't advise on an alarm as someone is with Ed all the time now (me). Falls still happen though.
    Your OT...
  13. Thread: bereavment

    by Fru
    Replies
    30
    Views
    6,251

    I am so sorry to hear this news Dave. Thinking of...

    I am so sorry to hear this news Dave. Thinking of you at this time
    Fru x
  14. Replies
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    4,508

    Hello Claire, I am so sorry to hear of your...

    Hello Claire,
    I am so sorry to hear of your husband's diagnosis. We are Cambridge too. You will get all the info from the Cambridge centre and from the wonderful people on this forum. If you would...
  15. Thread: Laser therapy

    by Fru
    Replies
    8
    Views
    1,859

    Thank you MNDConnect team, yes that's exactly...

    Thank you MNDConnect team, yes that's exactly what I have come up with and thank you for looking into this for me. I will do some homework on this and get back to you later in the week.
    Fru XX
  16. Thread: Laser therapy

    by Fru
    Replies
    8
    Views
    1,859

    Hi everyone and thank you for your thoughts on...

    Hi everyone and thank you for your thoughts on this.
    Yes, I found it a bit odd as it seems to be mainly for pain relief and Ed doesn't get much pain as such. This is a mobile thing (home visit).
    I...
  17. Thread: Laser therapy

    by Fru
    Replies
    8
    Views
    1,859

    Laser therapy

    Hi All,
    We have been offered some sessions of laser therapy for a Christmas present. Does anyone have any experience of this? I can't find anything much about this being used for people with MND...
  18. Replies
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    Congratulations on your move to your new home...

    Congratulations on your move to your new home Ellie. It sounds wonderful, just what you need and you did definitely choose the right time to do it. Well done!! I thought you were a bit quiet and now...
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    Okay, it's a very long and complicated looking...

    Okay, it's a very long and complicated looking paper and very much over my head. If anyone would like to see it please pm with email.
    Best wishes
    Fru x
  20. Replies
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    Hi everyone This is what my friend says... I...

    Hi everyone
    This is what my friend says...

    I have taken a brief look at their publication (attached). I think they did a good work and it has been published in a prestigious journal in our field....
  21. Replies
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    Thank you for your support. As promised earlier...

    Thank you for your support. As promised earlier here is some further reading for anyone interested to follow on from the first post on this thread xx
    ...
  22. Replies
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    8,894

    Just letting you know that 0.25 is well tolerated...

    Just letting you know that 0.25 is well tolerated and the dose has now been increased to 0.5 from today. Nothing spectacular to report apart from that I have asked someone I know to check out the...
  23. Replies
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    11,020

    Hi Boiler:) Yes, Terry is right. We have the...

    Hi Boiler:)
    Yes, Terry is right. We have the same here. I am very often temporarily 'useless' (more smiley faces here). Previously I have been temporarily ...useless on a number of occasions too...
  24. Thread: My darling Peter

    by Fru
    Replies
    31
    Views
    6,523

    Oh Twinkle, this is such sad news. My thoughts...

    Oh Twinkle, this is such sad news. My thoughts are with you tonight. Best wishes always, Fru
  25. Replies
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    Hi TIANDB, No problem getting Ropinirole and...

    Hi TIANDB,
    No problem getting Ropinirole and starting low. Got one month at 0.25 and I am to get in touch in two weeks. How can we tell if this is any good? or whether it is interacting with any...
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