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Thread: Pain in the butt

  1. #11
    Forum Member Terry's Avatar
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    Hi Nigel;

    It saddens me that you seem to have not got any relief yet and can not sit in your wheelchair when a solution is probably quite easy and not really expensive.

    I guess Chris is your wife and like most carers has much too many things to deal with, let alone trying to sort out another thing. My wife's the same so I try to get some things moving myself but even then it often falls back to her and adds to her stress.

    Don't be shy on asking for things, quite often the first and second things are not right and we have to ask for another type.

    I do hope that you get some comfort soon, your life is hard enough without unnecessary pains.

    Love Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keeps us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  2. #12
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    I ment to write air flow cushion not pair! It arrived this am but up to now I'm still suffering and not able to sit long. Thanks for the mention of the Roho, do you know which one it is? The DN is trying to get one but I see there is one for sale on eBay so tempted to go for that.

  3. #13
    Forum Member Ellie's Avatar
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    Hi Nigel,

    If a pressure sore has already developed, it will have to heal before a new cushion will feel comfortable; I hope that's not the case for you.
    Did the DN see your sore bit?

    What airflow cushion did you get?

    You're looking at paying a minimum of 450-500 quid for a ROHO cushion for high risk areas, something like a High Profile Single Compartment cushion. Anything cheaper will be money down the drain

    My own cushion retails for 520 pounds. There are no cheap solutions to prevent pressure sores if you're at high risk...

    Ellie x.
    ​Diagnosed 03/2007. Limb onset (arm) sporadic ALS/MND.

  4. #14
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    Thanks so much Terry, I never realised how hard asking for help is. It's one thing if it's someone else but another having to ask for myself. I think it's called pride!

  5. #15
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    Hi Ellie, I so respect what you and Terry share! I was surprised you mentioned the single compartment Roho, the. Nurse mentioned one with projections which I think might be like this....ROHO Cushion and Cover 9 x9 Segments approx seat size 16 / 17" wide. That was if she can get one..... can you explain why the single compartment is better? Thanks so much again.

  6. #16
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    The latest cushion is a viola II, the alternating mode triggers strong fasciculations in my thighs and pins and needles in my left foot. Challenges eh.

  7. #17
    Forum Member Terry's Avatar
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    We have to ask Nigel and push if necessary using the Mnda if needed;

    Please let me know what size your cushion is. I have a oldish 4 inch thick Roho cushion that I can send you if I can find the pump to borrow for as long as you need whilst you try and get one from your OT etc. I have a thinner Roho and a thin jell cushion that I use sometimes but my bum is not too bad.

    Let people help you to live a better life and ASK and PUSH for that.

    Love Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keeps us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  8. #18
    Forum Member Terry's Avatar
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    I would have thought that the cushion viola II was one of the best and the pressure can be adjusted manually.

    Love Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keeps us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  9. #19
    Forum Member Ellie's Avatar
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    I agree that the Viola II is a good cushion, it's for very high risk areas. It's such a bummer (!!) that the circulating air action triggers fasics.

    It looks like the circulation time can't be changed? Or can it?

    Have you played with the "Comfort Controls"? (whatever they are!)

    That ROHO cushion was one of two suggested for me, but when my OT assessed me, she thought the J2 Deep Contour would suit me better. Both are for very high risk areas.

    I know it's hard and can be rather awkward being assertive, but your health & well-being are now more important than ever...

    Ellie x.
    ​Diagnosed 03/2007. Limb onset (arm) sporadic ALS/MND.

  10. #20
    Forum Member Jan's Avatar
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    I have recently developed a pressure sore which has opened up, just waiting for district nurse to come and change dressings. It is massively painful, and I cannot get comfortable at all. I am told our local hospital is not the place to be and if they cannot fix it at home they will admit to hospice to try to repair. Feeling sad that it is all coming at once!

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