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Thread: Bulbar symptoms worsening, and persistent fasciculations

  1. #11
    Forum Member
    Join Date
    Sep 2019
    Posts
    34
    Thanks so much, these are great ideas. I donít mind using aids that will help, itís more a matter of not knowing what might work so these suggestions are great. Thank you. Iím 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, itís just that things are suddenly progressing so quickly that I canít keep up. And I know I shouldnít 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 canít open my mouth with it on and sound even more deranged when I try to speak! Iíll get onto amazon now - itís my favourite pastime at the moment so thatís no hardship! (Though if you hear soon that Iím being divorced, youíll know why!! 😬😂.)

    Today i had a lightweight wheelchair delivered from Argos which Iíll 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. Iíve 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. Youíre also right re getting Sue to help me get dressed. She has offered time and time again but Iíve been too stubborn. Sheíll 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 Iím not sure sheís done anything about it as she hasnít been picking up emails either. Canít be helped, but I think weíve fallen through the cracks a bit unfortunately. Weíre 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 - thereís Strictly to be watched and wine to be drunk! 🍷

  2. #12
    Forum Member
    Join Date
    Feb 2019
    Posts
    239
    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

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