Feel lost

[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

[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

[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

[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

[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

[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

[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

[Ellie]

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

[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.

[Mmsm]

Diagnosticb MND bulbar onset 29/06/21

Because of the rapid progression I'm feeling about my illness.
I chose to talk to my kids today. I didn't have the courage to tell them exactly what's going to happen soon, (that I have a expiry date on my forehead) but they know I'm not going to get better and there's no cure.
I hope I have the courage later on.
My 15 years old son with autism. He not showed any emotion but said "if you can't eat you gonna die" and close himself in the room and not talk about this anymore. 😔
Can't imagine what's going on his mind.
Can't imagine what happened on his head.
My 10 years old son, cry and so upset, he make a few questions about this but still
don't understand why this happened or why I can't pass this to him. 😭
My oldest son 26, I told him 4 days ago and he don't said one word about this till today. 😔 When he lost his dad he not cry for years. 😔 Don't know what to think about.
My boyfriend continues to act like nothing has changed, but I find him crying in secret several times. He is unhappy with all this and the rapid evolution I am undergoing. He has been very strong in front of the kids and successfully and has been my anchor. But how to relieve his pain.😔
And me... Well... Try show them a good face and it's everything okay (isn't but OK).
Just hope can celebrate my son birthday in October 😔

[Lynne K]

hi mmsm - this is my experience - everyone's will be different

i'm on day 13 since diagnosis of MND. single mum with an 18 year old daughter. told her on day 8 - second hardest thing i've ever done in my life. the hardest BY FAR was day 1-7; just thinking about telling her and the impact it would have on her life crushed me. i did discuss with a close friend on day 2 as that was the most pressing need for me in taking in the news - that helped a lot. i don't think a professional could have advised me better than the friend who has been part of my daughter and my life for years and knows how we work, and has children herself.

In the end, the telling was nowhere near the dread i had felt. there is no way to do it 'right'; your love for them, and theirs for you, will get you through.

i think i have emotional lability - or who knows if crying your eyes out is normal in the circumstances - so i started telling my daughter about how i had that, and it was perhaps part of the symptoms she had seen already - i've lost about 70% of speech over the last six months. and then i just blurted it out and mainly mimed whilst sobbing that what i had was bigger than just my tongue. and she totally got it, and hugged me and i cried more than her - i think she was trying to be strong for me. And then she went to her room and cried for 20 mins - and i went up and she'd googled everything - and it was right that she had her own time and space to take it in.

and then it was done. done, done, done. and she's been brilliant and supportive and probably better informed than me since. so take a deep breath, let go of 'protecting them' and just do it, however badly you may feel you might do it. there is no script and you can't control the telling, anymore than you can MND.

and then you, like me and my daughter, will be on the other side............


xxx

A big virtual for you and your amazing daughter 🤗 🤗, love Lynne xx

[JAC]

hi mmsm - this is my experience - everyone's will be different

i'm on day 13 since diagnosis of MND. single mum with an 18 year old daughter. told her on day 8 - second hardest thing i've ever done in my life. the hardest BY FAR was day 1-7; just thinking about telling her and the impact it would have on her life crushed me. i did discuss with a close friend on day 2 as that was the most pressing need for me in taking in the news - that helped a lot. i don't think a professional could have advised me better than the friend who has been part of my daughter and my life for years and knows how we work, and has children herself.

In the end, the telling was nowhere near the dread i had felt. there is no way to do it 'right'; your love for them, and theirs for you, will get you through.

i think i have emotional lability - or who knows if crying your eyes out is normal in the circumstances - so i started telling my daughter about how i had that, and it was perhaps part of the symptoms she had seen already - i've lost about 70% of speech over the last six months. and then i just blurted it out and mainly mimed whilst sobbing that what i had was bigger than just my tongue. and she totally got it, and hugged me and i cried more than her - i think she was trying to be strong for me. And then she went to her room and cried for 20 mins - and i went up and she'd googled everything - and it was right that she had her own time and space to take it in.

and then it was done. done, done, done. and she's been brilliant and supportive and probably better informed than me since. so take a deep breath, let go of 'protecting them' and just do it, however badly you may feel you might do it. there is no script and you can't control the telling, anymore than you can MND.

and then you, like me and my daughter, will be on the other side............


xxx

[Gordan1111]

Hi again mmsm. Does a nurse visit? Please make sure you're getting proper nutrition. It's important to maintain your weight for all your sakes x

[Barry52]

Children are very perceptive and they can be helpful if they understand what is going on. It is your choice but I suggest that you have a frank discussion.

[Mmsm]

I asked the doctor at CAMHS who follows my son for advice on how to tell them. I'm in a dilemma between saying or not saying. I wonder if it won't be easier to let it happen without them seeing me as if I were a package with an expiry date. In two months my situation got worse, I lost my voice, my ability to eat by 80%, my body is heavy and it's slow, I lost 12 kg, I'm 50 kg now. From the belly up, the muscles tremble and lifting 1kg is difficult. The doctor said I'm progressing very quickly. That's why I don't know if telling the kids is going to be a good idea. 😔