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  • Kayleigh
    replied
    Jonboy has already kindly posted some photos on the following thread - you will see from his posts that the equipment (apart from the bed) wasn't provided for him and so he had to fund it himself (approx £20k):-

    http://http://forum.mndassociation.org/showthread.php?9063-hoist-small-enough-to-fit-in-any-room&p=88615#post88615

    In England, what we get provided with free of charge is a postcode lottery. I don't think it's supposed to be like that - but, unfortunately, I think that's the harsh reality that many of us are faced with.
    Last edited by Kayleigh; 15 May 2019, 19:09.

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  • Jude Hall
    replied
    Originally posted by jonboy53 View Post
    I am going to provide details of my MND facility when it’s finished, with photos etc.etc.
    Still waiting for ypur photos.😁

    You are very lucky to get the equipment you need so easily.
    My mums OT is not so helpful. We have to buy most things mum needs or else if she waits we fear things wont come in a timley fashion to be of any use. We cant even get an over the bed table let alone any thing more technical. Mum was going to be sent a profiling bed which we were so glad to be offered as this would have been so expensive, Dad rang andasked the OT if mum could have an over bed table at the same time as they bring the bed, only to be told we dont give them out anymore, you'll have to buy your own.

    Back to the reason for posting......
    Any photos for use jonboy53.??

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  • Ginger
    replied
    Originally posted by Ellie View Post
    A dingy !!! That's hilarious Ginger Glad it works for you.
    Yes Ellie he says "are you all aboard chocks away!" "Where are you sailing to tonight"you have to have a laugh. 😂

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  • Kayleigh
    replied
    Hi Mick,

    It's great to hear that you are receiving such good support from your OT etc. It sounds like you are also blessed with having lovely parents, who look after you very well - your parents seem very kind and caring!

    Best wishes,
    Kayleigh x
    Last edited by Kayleigh; 28 February 2019, 19:15.

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  • mickmac
    replied
    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 neurologist in the country specializing in mnd her team keeps in touch with both the hospital based specialists and the community care team. But really the Irish mnd charity is brilliant. They supply most of my stuff that in theory the health service is supposed to supply. I'd be lost without them.

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  • Kayleigh
    replied
    I look forward to seeing the photos Jonboy - and I will show them to my husband, so he knows what standard he should be aiming for concerning the provision of my facility!

    You do know that we are supposed to be entitled to free advice from our OT about such a facility LOL (it sounds like your OT is about as much use as a chocolate teapot!!! - you should be able to put a complaint in and get her exchanged for a better model! - we shouldn't have to put up with unsatisfactory service from an OT or any other healthcare professional who is being paid to support us!)
    Last edited by Kayleigh; 28 February 2019, 15:42.

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  • jonboy53
    replied
    I am going to provide details of my MND facility when it’s finished, with photos etc.etc.

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  • Kayleigh
    replied
    Thanks for the recommendation about the 'jelly switch' Mick. My MND facility at home probably isn't advanced as Jonboy's, and so thank you for your tips and advice about equipment etc.

    Although I agree with Jonboy that there is probably a great deal of knowledge amongst the thousands of members of this forum, it's only a small proportion of those members who are able and/or wish to share their knowledge with us. Many thanks to everyone who does join in by posting on this forum.

    Jonboy - it's not right that you, and probably many other MND patients, don't get supplied with the equipment that we are supposed to be entitled to. Even if we are eventually supplied with equipment, it is often supplied much later than when we actually need it and so we have had no option but to purchase it ourselves.

    It says on the NHS website that we are supposed to be supplied with some items of equipment via our OTs etc free of charge, without being means tested, as long as each item is less than £1000.
    http://https://www.nhs.uk/conditions/social-care-and-support-guide/care-services-equipment-and-care-homes/care-and-support-you-can-get-for-free/

    What the the guidelines fail to warn us about, is that the items we are supposed to be entitled to are often withheld from us - due to the inefficiencies of the system that is supposed to make sure we receive all the equipment we are entitled to, and often items are supplied after we start to need them.

    Its not our fault if we have to buy equipment that should have been supplied to us but hasn't. I think that we should be entitled to get a refund for these items - but sadly the chances of that ever happening Jonboy, is as likely as your neuro OT finding your ..... (you know the rest).

    Kayleigh x

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  • jonboy53
    replied
    It’s OK mate I am not in the Hospice anymore - problem solved - my own MND facility at home is way more advanced than the Hospice. Ireland seems much better at coping with MND - Ellie gets loads of help, and not even much pain. I loved Ireland, I had a client in Shannon.
    Last edited by jonboy53; 28 February 2019, 14:12.

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  • mickmac
    replied
    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 of the bed as my arms won't work. I also bring it into the hospice as I can't use their alarms.
    https://www.healthandcare.co.uk/call...rm-system.html
    I just touch the switch with my foot and the pager is activated. It's quite loud and works well at home. In the hospice I have the pager taped to the wall as the range is limited and works best at home but the pager is loud enough to bring the care staff running. I just have to make sure it's reset properly each time I set it off. When I got it the pager was included but some companies sell them separately for some reason.

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  • jonboy53
    replied
    Hi All,
    It is amazing that these simple problems are such an issue considering there are 5000 of us all being tortured before we die a hideous death. I can’t get help from the " healthcare professionals”. My neuro OT is so useless I bet she couldn”t find my **** in the dark with a torch. She had been saying she needs to assess my needs at some point for 1.5 years now and all she has ever done is measure my hips about 100 times. Guess what - they are still 19” across. My wife and I check on NRS website for stuff, and buy it myself. There are loads of pads an pillows to alleviate limb pain and discomfort.
    You need to maintain two sleeping positions as a minimum as long as you can to ensure perfusion and prevent pressure sores - even with an active mattress.
    Magnesium Citrate stops night cramps because one of the issues is a calcium/magnesium balance at a metabolic/cellular level. I alternate Tramadol/Ibuprofen/Paracetamol for pain relief. When I was at the Hospice I was stuck on my back all night and could not reach the bed control or the alarm button - lying awake all night in pain is a truly ghastly experience.
    I bought a vibrating massager that increases the blood flow and give total relief of musculoskeletal pain. £50 - totally brilliant.
    I use EMS machines to excercise my muscles so they do not waste away so quickly. If they worked for Bruce Lee in the 70’s they are good enough for me!
    Neuro Muscular Therapy addressing trigger points and refered pain is brilliant but good luck finding a physio that knows anything about it. Luckily I did.

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  • Ellie
    replied
    A dingy !!! That's hilarious Ginger Glad it works for you.

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  • Ginger
    replied
    Hi Mick,

    Like you my mnd has started in my arms my left one has very little movement now and gets stuck under me. I sleep in what my husband calls 'my dingy' one of those all body length pillows. It supports my shoulders and my legs. I suffer from cramping in my leg that wakes me and my husband because it's so painful. Broken sleep is a pain but we need to find solutions along the way with this ever changing illness.

    Best wishes
    Ginger x

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  • Kayleigh
    replied
    Hi Shrew,

    The pillow sounds great - probably a bit like sleeping in a very comfy nest!

    I hope you are able to get enough sleep and rest as well.

    Kayleigh x

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  • shrew
    replied
    Thanks Kayleigh, he has no daytime pain, we assume its because his shoulders are bony. before my friend brought the pillow into work he had started putting a pillow inbetween his legs which seemed to work. I collected a prescription for gababentin but hes not used them, just upped his amitryptilene. just hope he continues to sleep well. the pillow is huge! as long as the bed and each side is ptobably 6 or 7 inch wide

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