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Hello I’m Douglas

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  • Ellie
    replied
    Hope you slept reasonably well after that ill-planned, traumatic day Douglas - you must have been exhausted

    So glad you're out of hospital... There's no place like home, as the saying goes.

    (I daren't mention the feeding tube )

    Love Ellie.

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  • Dis1960
    replied
    Well that was an interesting day- the plan was to leave at 5pm

    That was changed to 3pm so patient transport transferred me by stretcher at 3 got to the house 330 no carers because they hadn’t been told of the change of plans. Ok patient transport got in and carried all the nippy, cough assist, tubes, masks, prescriptions and a box of Fortisip inside then announced they couldn’t get the stretcher in the front and couldn’t open the kitchen door. So waited in the ambulance on the stretcher for another crew to help transfer to a chair. They came at 5 and i was finally inside at 520. Then we couldn’t find the Fortisip

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  • Iron Will
    replied
    Originally posted by Dis1960 View Post
    I’m 58 and this year have had a few trips/falls; lost a lot of weight and saw my speech dwindle to almost unintelligible.

    The GP thought either a stroke or MND so signed me off work ( I have been a software engineer) from the 18th September for six weeks

    I was given the clinical diagnosis of MND at Salford Royal last week and am waiting for the MRI scan results.

    I really feel sorry for my wife In all this xxx
    hi, Douglas. I'm the same, I'm scared for my wife when this is over. I am totally reliant on her for my every need, its not fair that her reward for all her hard work will be to be a widow. all we can do for our wives is be strong, be positive, last as long as we possibly can. whilst devastated I relish the fight, MND will drag me screaming and fighting from this world.

    I too attend Salford Royal (Dr Ealing) its the best we could hope for.


    I wish you both the best x

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  • Terry
    replied
    All the best Douglas;

    Been wanting a update for ages.

    Love Terry

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  • Deb
    replied
    Everything crossed for you Douglas,

    Good Luck,
    Love Debbie x

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  • Ellie
    replied
    Great news Douglas.

    Are your CO2 levels under control then?

    Love Ellie.

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  • Kayleigh
    replied
    All fingers and toes crossed for you Douglas. Love Kayleigh x

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  • Gillette
    replied
    All fingers crossed for you, Douglas.

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  • Dis1960
    replied
    Crossing fingers home today

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  • Dis1960
    replied
    Well after that meeting the doctor was more amenable to tweaking the nippy
    So last night the pressure was reduced to 20 and the initial ramp to full pressure was set to 10 minutes CO2 was6.0

    Tonight the triggers are being changed

    The story now is that the window in which they would do the peg was before the 25% weight loss and the clincher is the CO2 levels variations...

    Leave a comment:


  • Ellie
    replied
    Hi Doug & Chris,

    I can't stop thinking about your situation. I realise your minds are all over the place so I'm sorry for bombarding you with more suggestions but, given that doctors have said they can do no more, maybe now they'll agree to lower the IPAP setting to 10 or 11 and see if that is more comfortable.

    It's worth restating that quality of life should generally take priority over quantity for those of us with ALS - though of course it remains a personal and subjective decision - so if any 'treatment' is uncomfortable or can be made more comfortable, we are absolutely allowed to say so. That goes for meds, feeding, NIV, manual handling, cough assists etc. and even paid carers' competencies/relationships - we should be in control of our care, though this may sometimes require finding strength from deep within ourselves to demand what we deserve...

    Anyway Doug & Chris, you're foremost in my mind and I wish you strength to get what you need.

    Love Ellie.

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  • Dis1960
    replied
    Thanks Dina that meeting was just days after our 28th anniversary so hearing that reaching the 30th anniversary is unlikely was harsh and saying they couldn’t do anything further was brutal

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  • Gillette
    replied
    Hi Chrissie, regarding the quality of care, it is [I]very[I] important to liaise with the care manager at the agency (if you use an agency) so that any problems can be nipped the bud. There is the option of having a personal budget and employing your own carers. In addition, it may well be that Doug qualifies for Continuing Health Care funding.

    By the way, there's nothing mad about being in denial but it can be very painful when reality hits.

    Leave a comment:


  • chrissie57
    replied
    Thank you for your replies, everyone. I fear part of the problem is that even although Douglas was diagnosed in October I was/am still somewhat in denial, mad as that must seem, and Fridays meeting bought me up against reality��.
    I have considered whether I could be involved with the caring but I work full time and I am not sure how it would work. Sadly we are aware from personal experience that, although the costs are breath taking,the service provided often does not merit what you pay.
    I believe our Social Worker is applying for CHC

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  • Terry
    replied
    Hello Chrissie and Douglas;

    As Dina says, apply for CHC, you stand a very good chance of getting it, CHC is not means tested and is generally backdated.

    If people won't help you there, try phoning the hospice or Mnda connect to get things rolling.

    Love Terry

    Leave a comment:

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