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  • Kayleigh
    replied
    Hi Jonboy

    Welcome home! I expect you are glad to be back home with your wife, after being away for so long - and the good news is that you are back in time to watch 'Dancing on Ice' this evening!

    Sorry to hear that you didn't enjoy your stay at the hospice very much. Understandably, staying at a hospice might not be everyone's 'cup of tea', but they provide a wealth of support that many of us would be feel lost without, and so thanks for all your fundraising Jonboy - you are a kind and cool guy!

    Thanks for the tip about the comfort of an 'active mattress'. I had not heard of them before and so googled them. Looks like they can be a little pricey to purchase, and so it's great if they can be sourced for us via our OT etc.

    http://https://www.careco.co.uk/item-s-bd03021/softform-premier-active-2-mattress/

    I hope you enjoy being back with your home comforts again, and that you have a great afternoon/evening (even if you don't watch Gemma Collins and other celebs ice-skating on TV! ) .

    Kayleigh x
    Last edited by Kayleigh; 3 February 2019, 15:47.

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  • jonboy53
    replied
    respite at the hospice is over - did not enjoy it, too much invasion of my privacy and many other issues I will not whinge about. I used to help raise £18000 ish a year for this hospice so I do not feel guilty about staying there.

    The positive outcome was OT have lent me an active mattress for my profiling bed, which is totally awesome. Try one out if you can.

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  • Kayleigh
    replied
    Hi Jonboy,

    I hope you are feeling much better soon.

    Hopefully, that 'trick cyclist' is kind to you - but, of course, those 'trick cycling' sessions are not compulsory!

    Hopefully, you will be back home with your wife very soon.

    TTFN.
    Kayleigh x
    Last edited by Kayleigh; 13 January 2019, 23:01.

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  • jonboy53
    replied
    I was whisked off to a Hospice so unable to finish my NIV research for a while. I have a Talley active matress hereand sitting around here has cleared up the lymphodema in both feet already. I wish I wasat home with mywife though. I started criticising the NHS for poor treatment of ALSers, so they suggested seeing the trick cyclist. pfft

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  • Kayleigh
    replied
    Good old e-bay. I hope all goes well for you.
    Best wishes,
    Kayleigh x
    Last edited by Kayleigh; 10 January 2019, 22:32.

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  • jonboy53
    replied
    thats exactly what I will do

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  • Kayleigh
    replied
    Good news Jonboy - but I jolly well hope you get a discount for a bulk purchase! - if you don't need them all, there is always e-bay!
    Last edited by Kayleigh; 10 January 2019, 21:01.

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  • Ellie
    replied
    You've room to play with on the settings Jon, esp on Ti and Back-up, if you find you need to fine tune them. I'm sure you'll find your optimal settings.

    Best wishes,
    Love Ellie.

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  • Terry
    replied
    Hi Jon;

    I have emailed Mnda Connect direct putting down what you said in your first 2 posts and suggest that you do the same as the way you have been treated is disgraceful.

    You should not be paying or having to try to set things up like that.

    Also I would get your doctor to refer you to your nearest hospice as they have their own specialists and normally help us in so many ways. You can refer yourself there as well, it's well worth it.

    Love Terry

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  • Deb
    replied
    Hi Jon, welcome to the forum.

    You sound really knowledgeable and pro active. A good positive attitude is really important and I find it helps me when I have control over any decisions.

    There is expert practical and emotional support on this forum and always someone to answer a question.

    However, it is worrying that you have to work some things out for yourself and fight for the equipment you need to be safe and comfortable.

    Take Care and keep posting.
    Love Debbie

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  • Ellie
    replied
    Hi Jon,

    You don't have to "figure things out" yourself, or at least you shouldn't have to!

    You might find using the Nippy in Pressure Support mode is better, as it reduces the effort on your muscles during both breathing phases, augmenting gas exchange.

    The biphasic settings are recommended in ALS - an IPAP for inspiration and an EPAP for expiration - saving your respiratory muscles extra effort (that's ts aim after all!) Other factors to consider are spontaneous breathing and trigger breaths.

    My initial settings were IPAP 10 & EPAP 4, but I was a long way off FVC of 100%.

    IPPV = Intermittent positive pressure ventilation, is a standard, controlled mode of ventilation (does not require any spontaneous respiratory effort from the user), and is not synchronised with user's respiratory effort.

    I am more than willing to help you if you want help.

    Love Ellie.
    Last edited by Ellie; 8 January 2019, 21:39.

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  • Kayleigh
    replied
    Hi jonboy,

    Is it a manual wheelchair or were they 'generous' enough to supply you with the electric variety? - I only ask because we are supposed to be supplied with an electric wheelchair once 'they' have deemed us to be 'worthy' of one

    (As you can probably tell, my experience of 'wheelchair services' could be better - but I expect this is something that varies according to where you live - as is the case with many different services, probably a 'postcode lottery')

    Best wishes to you and your wife,

    Kayleigh x
    Last edited by Kayleigh; 8 January 2019, 20:04.

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  • jonboy53
    replied
    Kayliegh -
    My wife got the bed and wheelchair after much fighting - she said exactly the same thing��

    luv from me x x

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  • nunhead_man
    replied
    Good evening Jon and welcome

    Given you can build a Trident warhead and an Airbus 350, whom are you proposing to deliver the warhead to? :-)

    Seriously, if I need somebody advise me on my progression et cetera et cetera I know who ask first!

    By the way all I think I mentioned elsewhere that I had a weird feeling in my back and I wasn't sure if this was another MND thing but the current thinking is that I have got some sort of one-sided urinary tract infection so I'm taking antibiotics with my riluzole at the moment.

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  • Kayleigh
    replied
    Hi Jonboy,

    Good for you for being so resourceful!

    Many people would be " up S... Creek, without a paddle" if they had to manage like you do with such little support from the medics!

    Best wishes,
    Kayleigh
    Last edited by Kayleigh; 8 January 2019, 18:30.

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