Neck support

[DoreenC]

Just been to visit my mum and her head is so bent over she couldn't even look at me. She can't hold her head up and her neck is aching. Has anybody used any sort of head support that the could recommend? She looks so uncomfortable and sad

[easterncedar]

So sorry for your mother's trouble. It sound heart breaking. I have no relevant personal experience, but I do know this question has come up before, and maybe there is some useful advice to be had if you do a search on the site. hang on, we are all in this together. Peace, Easterncedar

[easterncedar]

I just searched " neck support" and several discussions came up. I hope there is something that helps in there for you.

[DoreenC in reply to easterncedar]

Thank you so much I will do a search x

[sammy90210]

Hi, you will need to see a neuro - most probably they will use Botox injections

Also check with her neuro if her carpidopa-levodopa amount is correct and whether it needs to be increased (that can lead to terrible leg spasms so he will need to be careful with that)

[DoreenC in reply to sammy90210]

Oh dear it all sounds dreadful

[sammy90210 in reply to DoreenC]

sorry, but I think the Botox injections actually help - they relieve the pain and the stiffness so it may be a good thing (if it's required)

[cabbagecottage]

I had intended coming on to post our latest experience with the dropped twisted neck .

Don't know if this would be suitable or not for your mum , johns head and neck has been the same for AV long time and I kept asking if there was anything I could use .

Answer always no . Until they sent a physio to visit us . She ordered next master brace . It's very good . We have only this week a tarted trialling it .

I have even tried it myself . It sits on the chest goes under the chin and has a Velcro strap to go round the back of neck .

It certainly worth asking about it . Depending how bad she is . I think it will be good for someone who still has some strength it does support .

[tenny36]

Yes my husband has days like this resulting in him not able to go in wheelchair or car - then we will get odd time when sits up fine for maybe half day then back to bending over - guess it's part of psp - my husband has feeding tube and hard to feed him - best to lay them on bed then u can least talk to their faces - keep strong. X

[imli]

We tried giving my dad Baclofen which is a muscle relaxant and that seemed to help. His neck was also bent forward and it hurt. Also neck massages from anyone or a certified therapist as well as putting warm steam towels to sooth neck. Ask about other over the counter pain relievers that may help such as Advil or Tylenol- all worth trying but with Doctor's advice. This is a horrible disease with its own set of challenges, and all we can do is try and make our loved ones as comfortable as possible without prolonging their misery. The symptoms can get a little better at times, only to present another challenge a few days later. Stay strong and above all give your loved one encouragement and LOTS of LOVE!

[Silverguy888]

Having been thru this stage already with my mom, get her to siting recliner. Push it back far enough do that the neck does not fall forward. Eventually the neck will correct itself.

[AmandaF]

I'm so sorry. My Mum's neck didn't droop but she had a lot of pain. We tried heat packs which can be heated in the microwave. These helped a bit,

amazinghealth.co.uk/lavende...

wheatybags.co.uk/products/w...

I also used ibuprofen gel, but I'm not sure if this worked. Just massage seemed to be most effective.

Amanda/x

[ketchupman]

Sorry to say, but this is definitely a common characteristic in the final 12 months of life. I had seen other patients do this that were a part of the support group that I lead, and my wife started doing this about a year before her passing. While in a wheel chair, her head would lean over so much, I had to be careful that she didn't topple out of the chair. I bought a neck brace on Amazon, but when I mentioned it to her neurologist, she didn't recommend us using it. Keeping her in her tilt back chair helped minimize any discomfort for her. She did receive Botox injections once in the neck, but they didn't seem to provide any relief at all. Maybe she needed stronger doses and more frequently?

God bless you.

Ketchupman