I have dropped head syndrome and have yet to find a head support/neck brace that I can wear for any length of time. I have seen the Drop Head Support from U.S. outfit Neck Solutions . Does anyone know if this is available in the U.K.? I contacted the company in the U. S. but they were unhelpful..
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Welcome to the Forum, David.
Have you contacted the Looking Forward Head Support System company directly, rather than Neck Solutions?
Love Ellie.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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Ellie,
Thank you. I have just looked them up on the web.Comment
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Hi David, I got one of these supplied through my splint workshop at my local hospital https://www.talarmade.com/products/headup-collar/
not sure if it’s the sort of thing you’re looking for or not?
Take care,
James
Foxes Never Quit 💙Comment
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Hi my husband had an Oxford Lee support, it was a strap that went around the forehead and a support which run down his spine and strapped around his waist. This support allowed my husband the privilege of traveling and living life a little easier. We tried the Head Up Collar but that didn’t help.Comment
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Hi David. My neck is a constant for me so sleeping is my only peace. I'm also getting a neck brace professionally made so I will let you know how that goes. 😁👍xBulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xxComment
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I’m really interested to hear what people find helpful, as I too am finding the pain in my neck difficult to deal with and is making life harder with my head dropping down. I was given a memory foam collar last week but it does not really help and I hate having something around my neck.Comment
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Jacqui, don't give up on a neck support - there are lots of options available! Please ask the OT or physiotherapist for different types.
Neck pain can be very debilitating...
Love Ellie.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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Has anyone tried to use The Looking forward head support or cap?Comment
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Sarah, I tried a DIY version of the band about 2yrs ago when my back, neck & shoulders were a bit stronger, but never got past 15mins-ish because of back pain. Also, I found it had to be quite tight around my torso or my head would slowly droop, so the overall feel wasn't that comfortable.
Maybe give it a try - we're all so different it may well work for you.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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Ellie, thanks for the encouragement I won’t give up, just having a bad dayComment
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