Positive strategies & inspiration needed

[Ellie]

My dog lies on my bed with me (thankfully not on that morning !!) and I don't even mind her often-stinky breath

Sometimes one of my family takes my hand and helps me stroke her - bliss.

3 sausage dogs on your lap Sarah slp - pure bliss.

Love Ellie.

[Lynne K]

Oh Lynne that is so frustrating for you

I tend to type in Word, then copy & paste into the reply box on the Forum. That way if my eyes go wayward and I mess up, I can click 'Undo' and text miraculous reappears. Not to mention autocorrect and capitalisation

Take care.
Love Ellie.

Ellie that's a great idea. I usually post from my phone but I think that I'll do so from my laptop in future so that I can do as you do as word is on my laptop and not my phone. Lynne x

[slp]

Pure therapy in a little body Ellie x I am so lucky x

[Sheila]

Hi Sarah,
Sorry that happened to you, so far I have been ok. Sometimes my husband has got to get me to the toilet quick. So it is only a matter of time. But I have noticed my bladder is more leaky.
On the subject of carers do we have to pay for them?. I expect it is means tested. I have never gone into it really.
Lynne don't worry about the post you got rid off, I have done exactly the same thing, shaky fingers.
Love Sheila x

[Lynne K]

Thanks Sheila, you hit the nail on the head with my shaky fingers on my right hand. My left is not so bad but I'm right handed. I'm glad that you understood. It took some angst from me x

[Sheila]

Same here Lynne, right handed, shaky fingers, left not so bad. Though my thumbs not so good. Hope you have recovered from the nasty fall you had the other day.
Sheila x

[Lynne K]

Yea thanks Sheila. I'm ok. I got a super dupa lift up (from the floor) device delivered yesterday. So, if I fall again my husband will be able to get me up much more easily and I won't be wiped out with the effort like it had taken last time. I'm still walking indoors with a 4 wheeled walker, despite my neurologist suggesting permanent wheelchair use. My OT disagreed with my neurologist.

I had a visit from the North West Assistive Technologies on Monday. Their OT is organising me a headset that can control my ipad and laptop; software for putting on the tv, lights and cd/internet radio/podcast device on; switches that are compatible with the program and a stand for my ipad. Their technician will spend most of a day here setting everything up for me. So even if I loose use of my hands, then I will still be able to independently put lights on and off; scroll through tv programs - choose what to watch and put the radio on. We are a lucky generation to have access to things like these. Have you got anything like this service in your area? Love Lynne x

[SarahWP]

Sorry about the radio silence, it’s been a full-on couple of days.

Sheila, re carers, at the moment my carers are from the Community Resource Team and we’re not paying. These were put in place as a sort of emergency measure. Longer term I’ll be using agency carers and we will have to pay for these as it’s based on savings but that’s capped at £90 per week - whilst I fall under social services (was recently assessed for Continuing Health Care (CHC) but don’t qualify (yet). So at the moment I have an ever-changing rota of carers, which is frustrating as we frequently have to explain things but that said they are all really, really lovely so no complaints from me. We have quite a laugh. And they love coming here as they always get a tea or coffee and a good old natter!! Sue has even been buying in their favourite coffees especially!

So sorry to hear about your fall Lynne, glad you’re ok.

I’ve had to relent and allow the carers to use my hoist with me tonight as I’m ever-more wobbly on my feet - and I just can’t get my feet to lift properly a lot of the time - very frustrating.

But today I made it outside into the sunshine - yay! Not for long but it was so nice to get some fresh air. Even if I was paranoid my wheelchair would topple over on the uneven surfaces around here!
And I managed to get my pension commutated (all paid at once in one lump sum) so we’re able to clear our mortgage which means Sue can stay here for the rest of her life. Such a relief.

Big night tonight (note, definition of big now much reduced as compared to my former life!), I’m trying my first pump feed and overnight too!! Am hoping this might make accidents such as Tuesday’s less likely...! (I feel your pain, Ellie - humiliation and self-loathing sums up my feelings exactly!).

I’m also trying mindfulness meditation as I thought that might help. Has anyone else tried it?

Failing that, I’ll be reverting to the Jack Daniels method. :-)

Much love and fortitude to you all.
Sarah xx

[Terry]

Hi Sarah,

I feel your pain but great to get outside today. Be extra careful on side slopping pavements, especially if you have a weak side. I tend to be weaker on my left side so am more careful if the pavement slopes that way.

I have listened to relaxing meditation you tube things overnight but I would recommend Jack Daniels if you can drink it, I can't.

Love Terry

[SarahWP]

Hmmm....I struggled with the Jack Daniels and in fact with swallowing drinks in general. Might have to resort to having via syringe into my PEG!

Apparently my wheelchair shouldn’t tip as it has 6 wheels and suspension as long as it’s upright. But I tend to tilt and recline it to stop my head dropping. I do have a neck support so really should wear that, I just don’t like it!

I got on with the pump feed except it stopped about 3 hours too early! My wife set it up as per directions but we’ll double check that today. Probably not a bad thing to start off slowly tho!

Have a good day everyone.
Sarah xx

[Ellie]

Hi Sarah,

I got on with the pump feed except it stopped about 3 hours too early! My wife set it up as per directions but we’ll double check that today.

If the pump was set up OK and the Volume ÷ Rate definitely was the right number of hours - not that I am doubting your combined arithmetical ability - assuming it said End Of Dose, the only thing I can think of is that the previous amount of feed given was not cleared so the pump took up where it left off, so to speak. For example, if you previously had 100ml of food and that was still in the pump’s ‘memory’, the following feed would only give you 400ml food even if the Volume/Dose is set at 500ml.

Is this the pump you have? If it is, the previously given feed is cleared by pressing [INFO] then [CLR]

Flocare Infinity Pump (3).jpg


Glad it went well otherwise.

Love Ellie.

[Sheila]

Thank you very much for the information Sarah.
I will look into mindfulness meditation, something I need I think. I always sip a bit of brandy, I find it calms me down and helps with nausea. I don't get on with my neck support either. So many things to think about with this damn disease it is overwhelming.
At least the sun is out.
Love Sheila x x

[Hayls]

Thank you Sarah WP for starting this thread, my use of my hands are almost gone and I’m so hung up on the embarrassing thought of someone else having to do my toilet needs, your honesty has helped me understand that it’s not the end of the world, love everyone’s suggestions for keeping your chin up
I’ve been approved for my pension and can choose to have a lump sum, how long did yours take to be processed, I’m also in need of a WAV vehicle, glad you are getting out to brighten your week

[SarahWP]

Ellie - you have every right to doubt Sue’s maths don’t worry - she’d readily admit!! But she followed instructions so it should have been right. Your point about the previous feed not having cleared is a good one, thanks - we’ll check. We’ve also discovered a setting which means it will keep going until the bottle’s empty so we’ll try that tonight. Our pump is different but they’re probably all fairly similar. Thanks for the info, guru! Xx

Sheila, I’m finding the Jack Daniels catches my throat now so May need to try the Peg method tonight... :-)

Hayls...I totally get it, I’ve been obsessing about toilet issues myself. I’m lucky tho as I have a “Bio Bidet” which does all cleaning and drying for me so I use that when I can, tho my commode doesn’t go over it so I have to get myself to it so tend to use during the day when my carers come in and/or I need more than a wee... Definitely one of the most useful bits of gear I’ve been provided with. Speak to your OT.

It took a couple of months to get my pension commutated. Once approved that I could have my pension I then had to provide a letter from my consultant saying I have a year or less left. Which she happily did. Not an easy read, even when you know it’s just been done to move things along. Let me know how you get on

And you should definitely get the ball rolling on a WAV. We went for a pre-used one which dramatically reduces the upfront payment (£400 vs thousands) and the wait (4 weeks vs 3-4 months), and none are any older than 3 years old. It’s a no brainer.

Happy Friday everyone, keep up the good fight.

Ps. Anyone on Instagram? I am if you’re interested- SarahWP111

Xx

[Deb]

Thank you Sarah for keeping us updated. I hope tonight is better for you and you sort your feed out.

Thank you to everyone on the thread for their honesty. It really helps to know we're not alone as I, like others find the indignity of MND one of the worst things.

Stay warm and cosy everyone in the storms this weekend,
Love Debbie x