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  1. Thread: PEG and RIG

    by mickmac
    Replies
    152
    Views
    22,149

    Hi Sheila Just looking at your message about...

    Hi Sheila
    Just looking at your message about your throat and I had a similar enough experience two weeks ago. I haven't had a feeding tube yet but have noticed my swallow is a bit weaker. Lucky for...
  2. Thread: Ideas of food

    by mickmac
    Replies
    11
    Views
    1,547

    Hi Terry I do miss eating bread. I was in the...

    Hi Terry

    I do miss eating bread. I was in the hospice two weeks ago and I tried some bread and butter pudding with plenty of custard and it went down pretty easily if I took my time. I hadn't...
  3. Replies
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    1,187

    Thanks Ellie I forgot about the condom catheters....

    Thanks Ellie I forgot about the condom catheters. I tried them myself but found them prone to leaking. But they would definitely be worth a try since they are non invasive.

    Mick.
  4. Replies
    7
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    1,187

    Hi Amanda There are people that have a...

    Hi Amanda

    There are people that have a catheter in place for a long time with out it causing any problems. As long as you're kept clean and you check the Urine for infection it can work. The...
  5. Replies
    4
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    1,800

    I also agree with the term being awful. I started...

    I also agree with the term being awful. I started mnd in one arm before it spread to the other. Also my neck muscles weakened so I would walk around with my arms very flat against my sides while...
  6. Replies
    19
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    3,214

    I'd like to see the photos as well so post them...

    I'd like to see the photos as well so post them up when ever the place is done. I'm lucky here in Ireland as my community OT is brilliant and helps me whenever she can. Plus with only one really main...
  7. Replies
    19
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    3,214

    Thanks for all the suggestions every one I'll...

    Thanks for all the suggestions every one I'll start looking at peoples ideas and see what works best for me.
    For Jonboy53 I got supplied with the following alarm system and I attach it to the end...
  8. Replies
    19
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    3,214

    Problems lying in bed.

    Hi

    I'm having some trouble during the night while lying in bed and if anyone has any suggestions to help me that would be great. Basically at night time I lie in a fetal position on my right hand...
  9. Potential new tablet being considered in USA

    Hi all

    I'm not sure how significant this news is but it seems that the FDA is considering approving a new treatment in the USA. The tablet ibudilast when combined with riluzole may slow the...
  10. Replies
    2
    Views
    864

    Opinions on Catheter and Rig tube.

    Hi everyone

    I'm looking for opinions of people who have had catheters fitted and also have had a Rig feeding tube fitted. Basically last November I had a standard catheter fitted by one of the...
  11. Replies
    30
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    5,614

    Hi Iv73 Sorry to hear that you're having such a...

    Hi Iv73
    Sorry to hear that you're having such a tough time of it lately. I don't want to sound grim or negative but does anyone have any knowledge of assisted dying. I've heard that it's legal in...
  12. Replies
    4
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    2,273

    Hi Julia I also find that the head up collar...

    Hi Julia

    I also find that the head up collar allows too much head movement in a car. I use a Miami neck collar instead while traveling. The Miami is a lot more ridged and allows very little side...
  13. Replies
    4
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    965

    Hi Namay Do you have a hoist. I use a battery...

    Hi Namay

    Do you have a hoist. I use a battery operated sitting to standing hoist. I have someone put the trousers around my feet and then the hoist lifts me from a sitting position off the bed or...
  14. Thread: Riluzole

    by mickmac
    Replies
    53
    Views
    21,914

    Hi Marigold I've also heard that taking...

    Hi Marigold

    I've also heard that taking Riluzole on an empty stomach can help with the efficacy of the tablet. The usual recommendation is to take the first tablet as soon as you wake up and don't...
  15. Thread: Newbie

    by mickmac
    Replies
    7
    Views
    1,739

    Hi Hungtri I'm Mick. Currently 42 years old...

    Hi Hungtri

    I'm Mick. Currently 42 years old and was diagnosed 3.5 years ago. I live in Ireland and I have to say that the team over here in Dublin try their best to help us. That along with the...
  16. Replies
    10
    Views
    3,069

    There does seem to be a link between being sporty...

    There does seem to be a link between being sporty and mnd. I remember one of the doctors I was talking to saying that in years to come there could be some small increases in the number of people with...
  17. Thread: Neck Pain

    by mickmac
    Replies
    14
    Views
    3,381

    Hi Twinkle I use a neck brace called a Miami....

    Hi Twinkle

    I use a neck brace called a Miami. It holds your head upright but is very ridgid and provides good relief for me. . You can't move your head much when wearing it and side to side...
  18. Thread: What's that?

    by mickmac
    Replies
    7
    Views
    1,412

    Agreed. I found that the ice bucket challenge...

    Agreed. I found that the ice bucket challenge raised awareness about the disease as well as funds.
  19. Thread: What's that?

    by mickmac
    Replies
    7
    Views
    1,412

    What you're all saying is true in a way but in...

    What you're all saying is true in a way but in all honesty when the neurologist told me that I had mnd I knew nothing about it either except that Stephen Hawking had it. With his passing away give it...
  20. Thread: Neck Pain

    by mickmac
    Replies
    14
    Views
    3,381

    Hi Does your husband have a raiser recliner...

    Hi

    Does your husband have a raiser recliner chair or a wheelchair that can be tilted. By adjusting either one of these he could watch the TV without straining his neck so much. It sounds like he...
  21. Replies
    10
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    2,015

    Hi Ben Sorry to hear about your diagnosis this...

    Hi Ben

    Sorry to hear about your diagnosis this week. It's normal to feel lost scared and lonely after the shock of an official diagnosis of mnd since the outcome can seem so grim. The best thing...
  22. Replies
    26
    Views
    4,738

    Hi Lisa Sorry to hear about your diagnosis....

    Hi Lisa

    Sorry to hear about your diagnosis. I'd wait and see what your mnd team say. They might send you to a speech and language therapist along with a nutritionist just to make sure everything...
  23. Replies
    17
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    2,697

    Hi Dolcy Sorry to hear about your husband....

    Hi Dolcy

    Sorry to hear about your husband. Sounds like he's having a tough time accepting the news and that must make it twice as hard on you as you have to cope with both the diagnosis and your...
  24. Thread: Wobbly head

    by mickmac
    Replies
    16
    Views
    2,770

    I have found that wearing a neck brace helps a...

    I have found that wearing a neck brace helps a lot. I'm currently wearing one called a Miami neck brace and I find that it holds my head in a somewhat ridged position but I don't have any neck or...
  25. Replies
    7
    Views
    1,854

    Hi Ellie Yeah I wear a neck collar while in...

    Hi Ellie

    Yeah I wear a neck collar while in the chair and am out and about in the chair.

    Mick.
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