Advice needed

[Rubyray]

Hi everyone
My mam was diagnosed with slow forming bulbar onset in October, there are good days and days pure panick with what the future holds, my mam can’t cough up phlegm she’s been given carbosistine for it it’s not working as well as it was is there anything other she can do about this ?? Her speech is getting worse, she’s feeling a weakness in her finger and shes got foot drop. How does this horrendous disease develop is it in stages any advice would be brilliant, sorry to go on
Thanks rubyray

[Ellie]

Hi Rubyray and a warm welcome to the Forum.,

Sorry for your mum’s diagnosis.

she’s been given carbosistine for it it’s not working as well as it was is there anything other she can do about this ??

Yes, there are things to try to lessen, thin and loosen the secretions, making them easier to cough up:

• The dose of Carbocisteine can be reviewed.
• Drink pineapple juice which thins the mucus.
• Use a saline nebuliser.
• Drink plenty of water.
• Use a Cough Assist and a suction machine.

If the pineapple juice an drinking a decent amount of water doesn’t work, has your mum an MND Nurse or a Community Nurse who could organise the equipment if necessary?

How does this horrendous disease develop is it in stages

That’s hard to answer Ruby because the rate and path of progression varies substantially. With bulbar onset, you can generally expect swallow and speech to be affected but it’s impossible to know. Is your mum seeing a Speech & Language Therapist (SLT)? And an Occupational Therapist (OT) can assess her gait/walking and hand function and provide aids to make live a tad easier.

I’m assuming your mum attends an MND Clinic where she sees a range of people, but she should be linked in with her local hospice, if not already.

Remember to look after yourself too!

Love Ellie.

[Terry]

Hi Ruby and welcome to the forum,

Sorry to hear about your mum's diagnosis and her current situation.

Sometimes red grape juice or grapefruit juice can brake it down. Also try to make sure that she has plenty of of fluids but this can be hard without a feeding tube.

There are other possibilities but it would be good to get a urgent referral to her SALT team.

Best wishes, Terry

[Lynne K]

Hi Rubyray, welcome to our forums. I'm sorry about your mum's fairly recent diagnosis.

I agree with Ellie that the progress of mnd/als is so varied amongst sufferers that nobody, including neurologists can say with any conviction how fast any individuals degeneration will be.

I see that you've had good advice about help with your mums coughing. Good luck with trying these
Love Lynne

[Rubyray]

Thankyou so much for your advice

[Rubyray]

I really appreciate it x

[Terry]

Hi Ruby;

Your welcome, let us know if any thing works or of any other problems.

Love Terry

[markce]

good afternoon ALL
I am new the the MND forum, my wife has just been given the news and we are now coming to terms with it and all the effects
at the moment she is ok but struggles with walking,she has been struggling with walking for about 9 months and as its gotton worse
so the big "Q" is when will she NOT be able to walk ....how long does it take

thank you to all and I wish everyone all the best

[Lynne K]

Hi Mark. Welcome to forums and sorry about your wife's diagnosis. I'm afraid that nobody, even neurologists can determine any MND sufferers rate of decline, nor which symptoms she'll get from a collection of possibles. But as she's already having difficulty walking it sounds like she needs a walking aid. Also, she ought be given a light weight portable wheelchair from your local services. Your wife's OT can help with arranging for these. If your wife hasn't got an OT already then maybe ring her MND clinic and ask about one there. She'll also get the input of a speech therapist, Physiotherapist and when time is right wheelchair services.

It'd be a good idea for your wife to start voice banking as a loss of voice happens for most. If you search the subject in previous posts you'll find discussions and information. Good luck with everything. It's good that your wife has you in her corner, but take good care of yourself too, Lynne

[Ellie]

Hi Mark and a warm welcome to the Forum.

I am so sorry for your wife's recent diagnosis.

Lynne's advice about getting walking aids, if your wife has none, is spot on - it is important not to fall.

And, as Lynne also said, nobody can even give her even a guesstimate to your big Q, unfortunately, but if she has an OT assessment and gets braces or a walking frame (or whatever), your wife should be able to stay walking safely for longer.

Look after yourself too, Mark.

Love Ellie.

[JAY TEE]

rubray, the thick saliva is big problem. I have LSU sucker Lamdal Sucker Unit which I use before eating and before clean mouth before taking Carbocisteine and eye drops. I also have a Clearway unit blowing through mouth and nose. Also got Riluzole tablets and Lansoprazole tablet.
I coming up six years since formally diagnosed with MND. Mine is all down left side luckily still use computer and drive my wheelchair and use sit stand hoist get me in out bed but cannot talk. Have had peg fitted but only use a bit as if food mashed up still manage to swallow
Best wishes John

[Terry]

Hi,

I have been having trouble with thick stringy mucus in my throat for a while now and it is causing me to cough a lot. I am trying but normally failing to drink more, drink red grape juice and have cut most of dairy.

I asked the doctor for some carbosistine, via wife and telephone.

She said that was for the lungs and has prescribed some sort of patches.

Love Terry

[Nettie]

I have a small can of ginger ale with my tea which helps with this problem Terry. Janette x

[Terry]

Hi Nettie,

Never been keen on ginger ale but tastes changed.

I might give it a go, my wife will drink it if I can't.

Love Terry

[Ellie]

Sorry you're having this problem, Terry.

I asked the doctor for some carbosistine, ... She said that was for the lungs

Carbocisteine is a mucolytic agent for the adjunctive therapy of respiratory tract disorders characterized by excessive, viscous mucus, including chronic obstructive airways disease and the respiratory tract includes the throat.

It is the recommended medicine for managing such secretions in MND, as per the MNDA info sheets, so I don't know if you want to go back to the GP? The patches may be hyoscine, which dry up saliva.

In the meantime, the enzymes found in pineapple and papaya juices, help break down protein in the mucus, thinning it.

Can you get a nebuliser?

Is your cough strong enough to cough up secretions if they are thinned?

I won't bang on about making sure you get enough water into you!!!

Love Ellie.