New diagnosis for Bulbar palsy

[Hakuna]

Does anyone keep biting their cheek and lips? It's very painful and I don't seem to be able to stop it happening. Any advice anyone please?

I have just been diagnosed with Bulbar Palsy and finding it very difficult to get my head round it. Frankly I'm terrified of the future. The symptoms began about 7 months ago with difficult with some words and it has now progressed to difficulties with speech, chewing and swallowing. I've lost a lot of weight but don't have much appetite. I also feel quite ill most of the time, feeling very weak and dizzy. I'm waiting for the hospital MND team to contact me to tell me what services they offer. Any advice anyone?

[Gordan1111]

Hello Hakuna Welcome to our group. I don't have useful advice except be careful of swallowing and see if you can get voice-banking. If feel well enough to still go on holiday ( ie caravan) then go for it x

[PeterPan]

Hakuna Very sorry that you’ve had that diagnosis and it does take time to get your head round it. That’s perfectly normal. The hospital MND team will be really important going forwards and they will answer your questions. Quite how it’s organised will depend on where you live, which hospital etc.

I was diagnosed with the ALS variant of MND, but some of my early symptoms were to do with speech and swallowing. In my experience your speech and language therapist will be key at this stage. He/she will probably want to talk to you about four things fairly early on 1) banking your voice so that any speech software you use in future will use your voice, 2) Dietary advice - how to choose foods that minimise possible choking, 3) providing you with thickener for drinks, and 4) discussion around the need for a PEG or RIG feeding tube to be fitted before you really need it.

There are other things to think about, but you will need to pace yourself and take one step at a time. Hope this helps a bit.

[matthew55]

Welcome to our world. The best advice I can give you is take it day by day. Here you will find help, support and love. Stay Strong. 👍🤗😁xx

[Ellie]

Hakuna A warm welcome to the forum.

II've lost a lot of weight but don't have much appetite. I also feel quite ill most of the time, feeling very weak and dizzy.

Honestly Hakuna, I wouldn't be waiting around for the MND Team to contact you, I'd give them a call and tell them you need to avail of their services asap.

Many people opt to get a feeding tube, which goes directly into the stomach, to allow for safe eating, drinking and taking meds. Of course you can opt not to get a tube.

If your appetite is poor, eating smaller meals more often can help.

Love Ellie.

[Ellie]

Hakuna The MNDA produce a useful guide on Eating and Drinking which can be downloaded here

[Deb]

Hakuna I'm so very sorry for your diagnosis and the overwhelming feelings you have right now. Its perfectly understandable to feel terrified of the future.

I would reiterate what Ellie said about not waiting for the MND team to contact you. We all need professional support and advice, especially in the early days so I would chase them up.

A warm welcome to the forum.. we are here for you.
Love Debbie x

[LindaB]

Hakuna welcome to the forum, not somewhere you would choose to be, but a really great source of support now you're here.
Initial support for me came via my GP...he referred me to my community Neuro rehab team...as I was waiting fora 2nd opinion from neurology.
I echo the advice of others just try to eat and drink as well as you can....sleep when you can and take care of yourself. Maybe give your GP a call to discuss.

[Lynne K]

Hi Hakuna, welcome here and good luck with getting all of the local services that you’ll need quickly. I agree about voice banking and there’s lots of previous posts about this subject if you feel liked searching. Ellie’s advice is good about eating and having a PEG or RIG early. There’s also been lots of previous discussions about that.

It’s not surprisingly how you feel. It sure is quite a task to get your head around in the beginning but taking each day as it comes is how most of us cope. Love Lynne x

[Worsleybird]

Hi Hakuna, I've been diagnosed bulbar palsy as well (July) but started in March when I began slurring my speech and GP thought I had had a stroke. If only!
It is a horrible disease, I still havent got my head around it. Why me, where's it come from, how have I got this, is it a misdiagnosis etc. Keep seeing people walking around in the sunshine enjoying life and thinking that was me last year with no clue as to what was going to happen in March. I tend to avoid neighbours/strangers and just have a close cohort of friends who can tell what I'm saying without me keep having to repeat and them becoming embarressed. I've just banked my voice with Speech Unique via the SALT/MND and also been booked in for a peg. I feel like the train's left the station and I'm left standing on the platform. Help is offered without me asking so I feel grateful for that. They also said a lot of people didnt want any help or intervention and thats understandable too. Try to plan your week so you have something to look forward to is the best way I find to keep going.

[SallyAnnB]

Does anyone keep biting their cheek and lips? It's very painful and I don't seem to be able to stop it happening. Any advice anyone please?

I have just been diagnosed with Bulbar Palsy and finding it very difficult to get my head round it. Frankly I'm terrified of the future. The symptoms began about 7 months ago with difficult with some words and it has now progressed to difficulties with speech, chewing and swallowing. I've lost a lot of weight but don't have much appetite. I also feel quite ill most of the time, feeling very weak and dizzy. I'm waiting for the hospital MND team to contact me to tell me what services they offer. Any advice anyone?

I had the problem with inadvertent cheek and lip biting which I agree is very painful. My consultant prescribed Pregabalin. It seems to have helped.

[matthew55]

Custom gum shields from your dentist. Don't worry they are nothing like boxers wear. 😀🤗😁👍xx

[Hakuna]

Thank you everyone for your positive responses. I'm working my way through the stuff suggested. Trying to remain positive but boy, is it difficult knowing that death is not that far away and what a death!

[Mary C]

Hi Hakuna,
in response to your post that death is not far away and what a death.

Would it help you to talk to your hospice or palliative care team about your end of life wishes?None of us know the hour of our death.

Talking about it with the palliative team helped me greatly and my wishes are recorded if it’s possible to carry them out.

There is a lot to consider when making your preference known such as faith beliefs, support likely to be available, hospice or home etc.

Then there are practical things to do like sorting a Will, Lasting Power of Attorney, Respect( DNAR ) form.I also wrote something to inform my eulogy and funeral service.
I wrote a list of who to inform on my death for my husband.
Audio recordings done for my grandchildren too.Voice banking done.

I found doing practical things helped me feel more positive as now I can just live each day to the full.

Like many people on this forum I was shocked and a bit fearful on diagnosis but having a “to do” list helped me.

In terms of biting lip and mouth I have started doing that too so will speak to my dentist about that as presume to do with muscles in face and throat weakening .

So Hanuka, I hope you have support from family, friends and a palliative care team to as well as on this forum.

Sending best wishes
Mary

[matthew55]

Also consider that most of us get to die peacefully in our sleep. There are definitely worse ways to go. 👍🤗😀😍xx