Feel lost

[Mmsm]

Gordan1111 the speach therapist give me her email so I can ask everything I need so she can try with other doctors give me the supplements faster and she try make sure they not call me because I can't talk anymore. On this moment I still wait for them contact me. I hope that happens soon.

[Ellie]

Mmsm Please see if your local hospice can help you and your boys. xx

[Gordan1111]

Hi Mmsm l too have bulbar onset. But we're not finished whilst we're still on here. Get all the good advice from professionals you can. Did read the mnd links that Ellie gave you. The better informed you and your boyfriend are, helps you to make good decisions I think. Stay strong x

[Mmsm]

Hi again.
What can help with excessive stick mucus?
I'm in hospital for two days and just today they give me some nebuliser.
They talk to me for put the PEG but I'm not ready for that 😔. I know if the mucus go away or no so stick I can eat better (I need try this way first).
Any ideas please?
Thank you

Diagnosed with Bulbar onset MND/ALS 29/06/21

[matthew55]

Hi Mmsm and welcome aboard this train that has only one stop. Nothing to worry about however as we are all onboard with you, and have been traveling for a while so advice, support, love and empathy is available for free in the dining car towards the first of the train. All aboard and Stay Strong. 😁😍🙏🎗️xx

[Gordan1111]

Hi mmsm try looking at search (3 bars) and searching on mucus. You'll find some
suggestions that people have come up with x

[Ellie]

Mmsm The nebuliser, used correctly, will help, as will proper hydration (~2000ml water, ask your clinician how much you ought to take), carbocisteine medicine and pineapple juice. xx

[JAC]

my advice is to talk about the elephant in the room - I call it Nellie and however much i put my fingers in my ears and go 'nah nah, not listening!" she actually needs to be taken out for a walk every now and then. so i'm recognising she's in the room but doesn't have to take up all of the room!
my daughter had, and continues to have her crys, but that's at least is processing it. and she even came up with how we can get priority at Alton Towers!! I have my private time of processing/crying myself - but it's so much easier to have it out there, at least for me. I don't think about how long i have - partly denial, partly due to the NHS MDT singularly failure to 'kick in' as promised - i'm on week 7 post-diagnosis and had no specialist medical support. We just fumble our way through, or i do.
You'll find your way too....xxx

[Mary C]

Hi JAC,
so sorry you aren’t having specialist medical support.Do you mean no neurologist?.. or no palliative care team.?
Is there a oval hospice to provide support?There is support for carers and children via hospices.
Whoever made your diagnosis didnt they say where they would refer you for support.
Once I was linked to a hospice team the support and advise arrived and carries on 13 months post diagnosis.It’s been invaluable to myself and my husband.
Best wishes
Mary