Bulbar Palsy - communication book.

[Ali]

Hello all,

My mum has MND PBP so cannot speak. She is going into hospital next week to have a feeding tube fitted. We were at a MND coffee morning on Monday and the MND staff and volunteers advised that we make up a communication booklet for the hospital staff if she is on her own. I will be at the hospital with mum but there will be times when I can’t be with her, she won’t be able to take her ipad/predicatable app with her.

I’ve bought a small notebook and written each phrase on a separate page. It should have basic phrases that she may need, so far we have,
Yes.
Yes please.
No.
No thank you.
I am cold.
I am hot.
I would like some water.
I would like a milkshake. (fortified drink that I’ll take in with us)
I need the bathroom.
I’m in pain.

We also have an alphabet sheet so she can spell out the odd word but mum gets exhausted very quickly and then very short tempered when people don’t understand!

Can anyone help with other phrases she made need so we can add them.

Thank you in advance.

[Ellie]

Hi Ali & welcome.

Is there a reason your mum can't bring her iPad? Security maybe?

When I go for respite, I bring instructions with me I don't always have access to my PC e.g. in the bathroom for showering, dressing & beautifying myself for the day! Your mum may not need as much help as I do.

Maybe add some phrases re comfort in the bed - e.g. pillows, blankets, adjust the back/food of the bed.

Would any of these be useful? Some are hospital specific.

https://www.amyspeechlanguagetherapy.com/communication-boards.html

Contact PALS (Patient Liaison Services) in the hospital as soon as you can and discuss any fears you both may have. Do her hands work well enough to work a call bell?

Best wishes,

Love Ellie.

[Kayleigh]

Hello Ali and welcome to the forum,

I was just thinking that rather than your mum having to turn each page to find the phrase she wants, maybe the phrases could be written on 1 or 2 sheets of strong card, so that she can find the appropriate phrase quickly and then point to it. (Just a suggestion which might work if she finds the page turning option fiddly/time consuming).

I hope everything goes smoothly at hospital.

Best wishes to you and your mum,

Kayleigh x

P.s. The only phrase I could think of that you haven't listed and might be useful is 'I'm tired'.

[Terry]

Hi Ali and welcome to the forum;

Like Ellie, I can't see any reason for not allowing a I pad in the hospital other than they won't be responsible for it.

Maybe you can get a older tablet with it on. To not allow it in when your mum can't speak is Very very close to taking away her civil liberties.

I went into a nuclear power station recently and one I disabled the phone facility from it they were happy for me to take it in.

It is handy to have stand by lists and would be so good if someone who knows her can stay over night, especially after the opp.

Best wishes, Terry

[Ali]

Hi all, thank you for your replies.

I’m hoping that she will just be in for the day, the nutritionist said it’s normal to be in and out on the same day. As she is having breathing difficulties and her oxygen levels are so low, she cannot have a general so will be having a local anaesthetic.

She is allowed to take her iPad with her to the hospital and I will be with her all day so can keep her iPad safe, it really is a lifeline to her but she cannot take it into pre/post op. I’m just concerned how she will communicate whilst there.

Ellie - the communication boards that you linked to are just what I was looking for. I will see if I can find someone who can print them for mum. Her hands work ok at the moment, as long as the button is withi reach!

The MNDA has been kind enough to supply mum with the iPad and app, we really do not have the funds to replace it so I would rather be safe than sorry.

Thanks again for all of f your replies. I am sure we will have lots more questions as her illness progresses but I have found a wealth of information reading through the message boards.

[Ellie]

Hi Ali,

In case you and your mum are worried about local anaesthetic only being used, that's normal. Generals are not used for feeding tube procedures, but a light sedation or anti-anxiety tablet can be given if your mum's breathing can tolerate it, so she is not overly anxious.

If your mum is having a RIG procedure, i.e. using X-ray imaging to guide placement of the feeding tube, she can use her BiPAP/Nippy machine if she uses one.

I hope mum is home the same day Ali, but don't be surprised or alarmed if she is kept in for a few nights - I was in for a few days and was 38 years old with very good breathing, most of us stay a night or two.

I hope all goes well.

Love Ellie.

[MNDConnect]

Dear Ali,

As well as a communication board your Mum may benefit from taking an Understanding my Needs booklet into hospital with her.

This booklet allows you to describe aspects of your mum's condition to allow the people taking care of her to fully understand her needs.

It was specifically designed for people with MND to take into hospital with them.

If you would like a copy sent to you please let us know with your address details.

With kind regards

Jacqui Anderson
Senior MND Connect Adviser

[Kayleigh]

Hi Jacqui,

I read with interest your post about the MNDA's 'Understanding my needs' booklet. Thank you for letting us know about this, because it has often crossed my mind how well I would cope in hospital with my disabilities.

I don't have any hospital stays planned, but it is very reassuring and useful to know that I can ask for the booklet to be sent to me, if I need it.

I have had a thought, which the MNDA may be able to kindly consider - would it be possible for the MNDA to provide an online 'information sheet' version of the booklet? - so that we can download it and print it out at home. The availability of an online 'information sheet' may be particularly helpful if we are taken into hospital in an emergency/without much notice, and there is not enough time to get the booklet sent to us in advance.

Best wishes to you and all the MND Connect team,
Kayleigh

[MNDConnect]

Dear Kayleigh,

Thank you for your reply.

The Understanding my Needs Booklet can be downloaded from our website: www.mndassociation.org

Please see the link below to the booklet:

https://www.mndassociation.org/wp-content/uploads/understanding-my-needs-interactive.pdf?7d15ee

With kind regards

Jacqui
Senior MND Connect Adviser

[Kayleigh]

Hello Jacqui,

Many thanks for kindly letting me know about the online version of the booklet, and for providing a link to it.

Kind regards,
Kayleigh

[Ali]

Hi Jaqui,

Mum already has the Understanding my needs booklet, it’s already filled out and I’ve just printed a photo of mum to stick on the front.

We are extremely luck to live 10 minutes away from our nearest MNDA and they have been so wonderful in the help and care she needs. They are very much on top of everything. Unfortunately I couldn’t stay for the coffee morning on Monday as I had to take the dog to the vet and was a little bit late picking them up so I was only able to have a quick chat with the ladies there. My dad has just been diagnosed with dementia and his short term memory is really bad so he forgot what he had been told!