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Thread: Hello I知 Douglas

  1. #41
    Forum Member Gillette's Avatar
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    Hi Dis,

    Which consultant did you see? I saw John Ealing, plus his two students. I was quite late going in but it didn't matter as he always gives the time you need. We were also talking about Salford and Wythenshawe and I now have an appointment with Dr Bacari (?) on 03 July about my breathing, before I can have my PEG fitted.

    It was kind of Kathleen to stay with you. She was telling me yesterday that her husband was one of the founders of the organisation.

    It's a shame we didn't know we were both going to be at the clinic, we could have had a chat.
    Dina

    Trying to keep positive, but not always managing.

  2. #42
    Forum Member Lynne K's Avatar
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    I have the C9ORF72 faulty gene too Dis.' I go to Salford Royal MND clinic too to Amina Chaouch's clinic. My next appointment is a Wednesday afternoon in August. My husband now pushes me from my motability car that's parked with luck in a disabled bay but when not available he parks me in the foyer from the drop off point and then goes to find a parking space. A bit off topic, sorry. Lynne
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  3. #43
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    I’m bemused I’ve been offered an inpatient bed at Salford AND at Wythenshaw...does this mean I’m far iller than I feel ?

  4. #44
    Forum Member Terry's Avatar
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    Hi Dis;

    I can only think that they are going to do sleeping tests on you and then see how you get on on a breathing machine.

    Have you asked about a feeding tube? could it be for that.

    I would find out what you're going in for.

    Love Terry

  5. #45
    Forum Member Ellie's Avatar
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    Quote Originally Posted by Dis1960 View Post
    The other problem is an increase in CO2 level in my blood so the idea is to be an inpatient to try the mask mechanism and if that works a PEG could follow
    Douglas, did you ever get to do the sleep study? I know the date was changed a few times but you had a date of 22nd May but obviously that didn't happen or it did and, based on the test results, they think you'll benefit from using non-invasive ventilation (NIV) and will give you a BiPAP machine, the most popular brand being 'Nippy'.

    Either way, it's good to have the inpatient back-up when first using NIV and you may even get a feeding tube, given you're there anyway. Have you a choice of hospital or are they two different admissions? I didn't really understand that bit

    Don't let them forget about your weight loss - that's really important!!

    Love Ellie.
    Last edited by Ellie; 30th May 2019 at 15:34.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  6. #46
    Forum Member Gillette's Avatar
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    Hi Dis,

    Sounds confusing, having the offer of a bed in both hospitals. I would suggest you ring the MND nurses to ask them to explain. Do you have their telephone number?
    Dina

    Trying to keep positive, but not always managing.

  7. #47
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    Dina, the consultant is Ms Chaouch and as soon as we got to Area 3 she appeared and exclaimed “ Mr Douglas you made it today”

    Terry and Ellie
    Both beds are for the sleep study/ breathing tests after I mentioned that my nose is almost permanently blocked with catarrh - 1 bed today at Salford Royal and 1 today or tomorrow at wythenshaw

    So tomorrow I’ll be admitted to Wythenshaw

  8. #48
    Forum Member Ellie's Avatar
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    Hope it all goes well for you.

    Though 'sleep study' is often a misnomer with so many wires and probes attached to you!

    X
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  9. #49
    Forum Member Terry's Avatar
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    Hi Dis;

    Sounds like a few nights of good sleep, not. seams crazy to go straight from one to another hospital.

    Best wishes, Terry

  10. #50
    Forum Member Lynne K's Avatar
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    Dina, John Ealing was the neurologist that I saw in 2016 in Fairfield Hospital Bury as an outreach clinic. He sent me for an MRI on my spine (that showed seriously degenerated discs) and then discharged me. I didn't realise that he'd discharged me. 10 months later I went back to my GP. He was very annoyed that I hadn't received a further appointment so he re-referred me. That time I chose to go to the main hospital in Salford. This was much further but I was treated much better. I've spoken about this previously so I'll leave it there. Lynne
    Last edited by Lynne K; 31st May 2019 at 16:50.
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

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