I’m struggling to write this. Thanks everyone for messaging. I can’t answer all sorry. My hands are on their last. But while I can I wanted to ask what people who have arthritis in neck use for support in bed and other times. My neck I’d aching and staff can’t get me comfy. I can move my neck left and right but need support re sleeping. Pillows don’t squash down to support my neck as I used to do at home. Please post suggestions urgently. I’m on my last xxxx
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Still in hospital neck very sore
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Could you get hold of a neck pillow Lynne? That’s a pillow with a bump along one edge. Husband should be able to buy one - amazon sell them. I have arthritic neck and i find this sort of pillow helpful.Bulbar ALS diagnosed September 2021, no speech, PEG fed, using ipad with Predictable to communicate, taking each day as it comes
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Lynne, if Steve won't bring in your pillows from home, can somebody else.
I'm guessing the hospital pillows are those thin rubber-covered ones, not feather ones which can cuddle your neck.
I use a support zone pillow which cradles my head and shoulders as I sleep on my back.
Maybe the hospital physio could help?
I'm sorry you're in pain.
Love Ellie xx
Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user.
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Thanks Mathew and hubby is bringing pillows tomorrow. Physio just called in and is referring me to orthotics re collars but I can still move my head left and right and support it xxALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.
I'm staying positive and taking each day as it comes.
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Hi Lynne. Im so sorry you're in so much pain. I've been thinking of you and wondering how you are so thank you for posting.
I really hope you get sorted with pillows. I can't turn in bed although I can move my neck ok so I sleep supported by lots of soft feather pillows on top of memory foam ones. If I didn't or they're not right I get a really stiff neck. I would imagine hospital ones aren't great .
Hopefully someone can bring your pillows from home ASAP.
Thinking of you and sending love and hugs xxx
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Lynne K - good to hear from you. I have been thinking of you and wondering how you are getting on. I'm also wondering about pillows, so good question 🙂Diagnosis confirmed as atypical ALS Jan 2022 (age 46) after several years misdiagnosed.
Symptoms began in left foot 2017. Now widespread. Powerchair user, useless left arm and clumsy right hand but generally positive!
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The photo doesn't do it justice Lynne.
I think the pillow Hakuna means is one of these, which I have used:
Neck support pillow.jpg
I also used a 'butterfly' pillow which has a cutaway neck part, like this one:
Butterfly pillow.jpg
Both of the above pillows are memory foam which I eventually found too hard. Hope the physio comes up with a comfy solution for you asap. xxDiagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Significant bulbar impairment - No functional limbs - No speech - Feeding tube - Overnight NIV - Eye gaze user.
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Lynne K good to hear from you , but sorry about the pain. I have got one of those butterfly pillows that Ellie has shown, but prefer a feather pillow that I can shape to what is most comfortable. Hope you can find some improvement. Love Heather xxDiagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!
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