Neck/head support

[Courgettegrower]

Today we had a visit from the community physiotherapist working with (I think she said ‘rapid response team’). She was very concerned about Ian’s head and neck posture. Leaning to the left and forward. This makes eating and drinking quite awkward now. She showed us some simple exercises to try and has now sent me a link to an MND site where people were discussing various neck braces. Thus it occurred to me that people on here must have the same problem and wondered if they had any advice.

[writerinlimbo]

My husband had a similar problem which became so bad that he ended up with his head virtually resting on his lap - and always slumped to the left. The wonderful OT at our council supplied a tilt-in-space reclining chair ("Sorrento") which allows gravity to normalise his posture. Made eating and drinking so much easier and I'm convinced he would have died by now without it. However, 5 months later he's now slumping badly again and today his chair is being changed to a "Phoenix" chair (normally used with MND) to provide more side supports. Strongly suggest you ask your OT about these. Apparently they require a lot of forms and multiple signatures!

[Hidden]

Hello dad has the same issue. he's been seen by postural specialists and apparently although there are lots of items for a side lean or a forward lean, the only thing on the market for both combined has been a hensinger collar, worn for short periods throughout the day and not during eating. I think it's helped his posture not get any worse. (you just have to watch there's not pressure from it building up on the left earlobe, and maybe put a little cushioning around that) Not everyone will tolerate it so the alternative info from the msa specialist nurses is that some families create a wedge out of bath sponges in a pillowcase etc to lift and prop someone's head up just while they are eating. (I think sometimes people have a bigger range of motion with their head than you might expect from how it sits)

He also has tilt-in-space chairs/shower chair/wheelchair- kirtan duo/azalea. I think having them in full recline all the time is possibly not ideal for the rest of his posture, or during eating -the OT would advise further.

your speech therapist will advise with regards to safe eating angles but the good news is if someone's head is forward there's not a choking risk, but it does involve more effort for the muscles to move the food back in the mouth against gravity if you see what I mean. They may start talking to you about inserting a peg tube. It's a very personal decision. Dad doesn't have one and he still eats and drinks very well. Although it is quite awkward for the carers, they are used to it.

he has a particular arrangement of pillows with brackets underneath in bed that's been designed by the postural specialist to support his head so it doesn't overly pull on the neck muscles.they also like to keep an eye on the alignment of his pelvis and his shoulders etc.

We got the postural specialist through the community OT from our local authority.

Hope that helps

K x

[Courgettegrower]

Thank you. So many different things to try, very grateful for your advice.