Bulbar symptoms worsening, and persistent fasciculations

[SarahWP]

Thanks so much, these are great ideas. I don’t mind using aids that will help, it’s more a matter of not knowing what might work so these suggestions are great. Thank you. I’m with you - anything they leaves me more energy for fun stuff is fine by me! My MND care team have done a lot for me lately, it’s just that things are suddenly progressing so quickly that I can’t keep up. And I know I shouldn’t but I feel bad making a nuisance of myself.

I like the idea of a hoist and transfer seat at the top of the stairs, thank you. Also the soft neck support. I have a firm one but can’t open my mouth with it on and sound even more deranged when I try to speak! I’ll get onto amazon now - it’s my favourite pastime at the moment so that’s no hardship! (Though if you hear soon that I’m being divorced, you’ll know why!! 😬😂.)

Today i had a lightweight wheelchair delivered from Argos which I’ll use downstairs until my motorised one is hopefully delivered soon. From then on it will be for outdoor trips, such as going to hospital next week. And it means I can use my small Zimmer upstairs now. So hopefully things will start getting easier. I’ve been so determined to not give in and do as much as possible unaided but think I need to accept that I only have finite energy now, and choose how I spend it. You’re also right re getting Sue to help me get dressed. She has offered time and time again but I’ve been too stubborn. She’ll enjoy that as she thinks my dress sense is dubious at times!! 😂

We have requested emotional support but my MND coordinator has been off quite a bit lately so a planned meeting was cancelled and I’m not sure she’s done anything about it as she hasn’t been picking up emails either. Can’t be helped, but I think we’ve fallen through the cracks a bit unfortunately. We’re hoping to see her this week though. And she has arranged reiki for me and my wife so that will be nice.

Well, time to get up - there’s Strictly to be watched and wine to be drunk! 🍷

[Sheila]

It is surprising what you can get on Amazon, mine is a soft neck collar, quite good. I can't wait another month for the appointment. I also got my manual wheelchair from Amazon. Very handy for appointments etc. My husband helps me with my clothes, getting them off and on, we do have a laugh about it. I am thinking about reflexology sounds relaxing.
I hope you and sue enjoy this evening, and the wine.
Sheila x