Pain/Agony

[Broostine93]

Hi,

My Gran is being taken to hospital after her nursing home were told by her that she is, to quote, 'in agony' all down the right hand side of her body since last night- they've now phoned an ambulance for her to go to hospital because it's making her breathing quite bad.

I was under the impression, from everything I've read, that MND doesn't cause pain. Can anyone shed some light on what this might be? I am panicking rather a lot.

Thank you all.

[MNDConnect]

Hi Broostine93

I'm sorry to hear that your Gran is unwell. MND itself doesn't generally cause pain but the immobility that it causes can cause pain or can cause very painful cramps.

People with MND can also experience other conditions, separate from their MND. Your Gran's pain may be completely unrelated to the MND. Getting the pain checked out by the hospital is a good idea as they'll be able to identify the cause and make her more comfortable.

Best Wishes

Rachel
MND Connect Adviser

[Ellie]

Sorry to hear this Chrissie, you must be beside yourself with worry

I hope she is well looked after in hospital and given appropriate care.

Sending you a big hug.

Love Ellie.

[Terry]

Hi Christine;

Sorry to hear of your Gran being in so much pain and I hope she's more comfortable now. Mnd is not normally painful apart from cramps but it does make us vonrable to side issues such as pulled muscles and many other things that cause pain. I could list some but it is so long, from teeth to ingrowing toe nails and wind problems.

Love Terry

[Lynne K]

I just wrote a lengthy reply Chrissie and it disappeared I'll do it again later. I'm wrecked now. Lynne

[Broostine93]

Hi Guys,

Thank you so much for your replies- they make me feel like I actually have some support!

I've just come home from the hospital- they've done a chest xray and some bloods. Still waiting for results, but doctor reckons she could hear crackling in the bottom of the right lung so we're thinking it might be pneumonia (not surprising, seeing as Gran is determined to eat things that she regularly aspirates with!)

The only issue is that, because her speech is so impaired, the doctors are having trouble understanding a lot of what she's saying and, as you all know, MND is so rare that most don't realise the specific ways in which she needs to have her body placed on the hospital bed (especially with the drop foot issue that gets really uncomfortable if not positioned correctly). I got her a pen and paper to write things down, but I'm 50/50 on whether she'll actually use it!

I felt I had to come back to work for a few hours before the doctor comes and determines what's wrong with her (work have been so good with everything up until now and I don't want to take the pee!)

I've been and grabbed a bag from the nursing home as I'm sure she'll be spending at least one night in the hospital- it's all drama today!

Thanks again, all!

[Music man's wife]

Thinking of you and your Grandmother Chrissie x

[Broostine93]

Thinking of you and your Grandmother Chrissie x

Thank you- means a lot to have my MND Family on-side x

[miranda]

Would it help if you wrote or typed a list of phrases your gran could point to? For example I’m cold. I need a drink. Please move my foot etc etc

[Ellie]

Chrissie,

If you have access to a printer (or maybe the Nurses' Station has):

- Maybe take a photo or two of how Gran likes to be positioned in bed and stick them above her bed.
- Print out any further instructions, e.g., if she needs her pillows in a certain way, or whatever.

And, as Miranda suggested, a list of key phrases would be handy, if your Gran would use them of course!!

There are communication sheets specifically for hospital stays available online (downloads) if she has to stay in for a few days.

Look after yourself.

Love Ellie.

[MNDConnect]

The MND Association produces a booklet called Understanding my needs. This can be quite useful if someone is in hospital as you can complete lots of information about the person, including things like their preferred positioning.

The booklet can be downloaded from the MND Association website here

If anyone would like a hard copy sending out in the post then please send us a private message with your details, email us at [email protected] or phone us on 0808 802 6262 and we will arrange this for you.

Best Wishes

Rachel
MND Connect Adviser

[Kayleigh]

Hi Chrissie,

Sorry to hear your Gran is very unwell. I can understand how frustrating it might be for her, not being able to communicate easily. It would be a good idea if all hospitals provided communIcation boards for any patients who needed them, but I don't know if any hospitals do.

There are free downloads of communication boards on the following websites:-

- Amy's Speech and Language:-
https://www.amyspeechlanguagetherapy...on-boards.html

- Widget Health website. You will see a box entiltled 'Ordering Information' - click on 'English A4'or 'English letter' and the communication boards 'Bedside Messages' will be downloaded:-

http://https://widgit-health.com/downloads/bedside-messages.htm

I hope your Gran is feeling much better soon. Hopefully she has been given some effective painkillers to make her much more comfortable.

Love to you and your Gran,
Kayleigh x

[Gillette]

Hi Chrissie,

Sorry to hear that your Gran is unwell. I wish her a speedy recovery. Giving her a pen and paper was a good idea - I hope she will use it as communicating with the staff will make her stay easier. She is so very lucky to have such a caring granddaughter as you.

I'm glad your employers are being supportive - I'm sure that helps you.

Take good care of yourself, Chrissie. Here are some virtual hugs to start you off. ((((()))))

[Lynne K]

Hi Chrissie. I wont rewrite the whole text but some.

I'm glad that your gran has at last gone to hospital for tests. It's about time. I think that the care home ought to have done so much sooner. But at least she is in the right place now. Hopefully she'll be a bit more comfy in a hospital bed.

Please update us when there's any news.

Hopefully you can now sleep well as some of the worry is removed. Lynne

[Broostine93]

Thank you all for your helpful suggestions and virtual hugs!

I went back up to the hospital last night and it seems that it's a really bad chest infection, verging on pneumonia. They're keeping her in for a couple of days (though, this was the info given to me by Gran, rather than a doctor so I may need to have a more lengthy chat when I go up today- it's silly the things you don't think to do at the time when you're panicking!)
I really felt for her last night- she'd not been to the loo since she first woke up in the morning in the nursing home and she was bursting when I turned up at the hospital. She was still in the AMU, waiting for a place on the ward- they don't have any transfer aids at all (i.e. no hoists and no rotundas). Gran has never been able to use a bedpan (even before MND struck) so that failed. They tried her with a she-wee and that failed, too- seems she can't physically make herself 'go' unless she's sat upright. The poor woman had to endure being rolled into an adult nappy (which still didn't resolve the problem as she wasn't sat in the right position even to be able to 'go' in those). Now I'm worried about a urine infection looming. It never rains, it pours!
I'm going back up after work today to hopefully see her a bit rested (though, let's face it- who actually gets a decent rest in hospital?) and hopefully a bit healthier.
I know this sounds a bit selfish in light of what's happened, but I've been quietly begging for a break for a few weeks when I've been visiting at the home (in a way that won't make her feel guilty, as I know that can make her snappy)- this is the exact reason why I've been asking for one. I've not been away from Gran for more than a day since her diagnosis at the start of March- what with the many emergency situations, housework things when she was living at home, carers at home being rubbish, finally moving into the nursing home and then sorting the house out ready to give back to the council and then a chest infection the first week in the nursing home and all the panic/running around that that lot entails, plus not taking any time off work 'just in case' I need the days for something Gran-related, I am absolutely exhausted. I figured that, if I'd have had a few days away somewhere, I could at least recharge a little before the next emergency situation struck- alas, that was not to be and here we are.
I'd love to say that one of the other relatives would do all of this in my stead, but they wouldn't. They're the 'visiting' kind, not the helpful kind (i.e. first thing I did when I left hosp the first time yesterday was run to the nursing home and pack an overnight bag for Gran which I later took back to the hospital- none of the other members of the family would have thought to do it).
Very tired of being the only person I can rely on in these situations!