Can anyone offer suggestions to help P stay a bit more upright as he is increasingly slumped forward with his chin on his chest. I was wondering if there are special chairs or wheelchairs with some kind of extra support. He is eating and drinking very little now and 'speaks' rarely and only in a whisper. It is so hard to see your loved one decline so completely.
Xx
You are so right about how hard it is to watch them. D still talks but much less and sometimes in a whisper. I guess he is proceeding down the speechless path. I have noticed he slumps in his chair a lot but usually he leans backward in his recliner a bit. I have it against the wall so it won't go all the way back. Otherwise he tries to recline it when I am not home and then he can't get out of it on his own.
I don't know about support devices for the head and shoulders yet, but I do think there are some I have heard of. Or possibly you could make your own with two small pillows on each side of the chair. Probably other people on here know much more than I do.
Thank you for thoughts, I know it is slightly different for each person. I think I might ring our lovely OT to see if she has any ideas.
Xx
John is exactly the same . His head if forward ll the time his chin tucked under . I roll a tea towel around his neck and I try t o recline as far as I can and he is comfortable thn I use the neck cushion and v shape pillows .
John is hoisted at all times with ceiling hoist . It's not easy and you cannot get it exactly right . His head falls twisted to one side as well .
He says it doesn't hurt much but I don't believe him he never ever complains .
Hi NanBabs !
Yes, so tough to deal with the emotional & physical roller coaster of these Neuro illnesses , for patients and their loved ones .
Some interventions that I'm aware of are wheeled chairs that have higher backs to support the head and that can be also angled back so that the person is not sitting straight up without head support . The typical wheelchair has a vertical back with no provision to support the head as you've noted. Another assistant aid might also be a cervical collar which fits around the pt's. neck like a supportive soft tube and can be used on and off as needed to support the head. You can pad these and tuck things in for comfort and cleanliness if necessary . I remember at least one posting where it was reported that having their spouse in an adjustable backed and comfy roll around chair worked very well for their needs.
All the best to you and your P. and wishing you a peaceful and loving holiday season .
Elise in NY , USA
Oh Nanbabs I know it is so hard to see your loved one slip through your arms, sometimes literally! B goes to Speech therapy and he has a chin brace which attaches around his neck with a Velcro strap. The goal for this brace is to keep his head erect for the electrodes which are fastened below the jaw, under the chin. The brace rests from chin to chest to help stabilize the head. It's not very invasive can be immediately removed and seems relatively comfortable, for a short time. You might ask your doctor about the chin brace ...
AVB
Neck braces may also work but they disallow much movement.
Did that come through speech therapist
Yes. It is only used in the office when B is having sp. therapy. I bet since it it is not very invasive, that you could get a brace like that...I'l ask the sp path today.
AVB
Guess what I did today . Made my ofacebook.com/lynda.a.dawson... brace . . ,, I rolled a tea towel and put it under Johns chin , tied it over his head . Looked like he had toothache . lol?
It did help a lot actually . Might have been coincidence but he drooled less and was able to keep his head up a little better . Until he got too tired and switched off .
Just got back from speech therapy. She said if your husband is using a wheelchair, there may be better head support systems using that agency instead; and does not recommend this as it is not a head support just a short term chin support. So sorry dear not really anything for you here. But do look into your wheelchair company, they may have soemthing! 
AVB
Thanks AVB, the chin brace sounds exactly what P needs, I will ask the OT or the nurse tomorrow.
Xx
I tilted wheelchair can help - it was a great help to my dad. You can tilt it back a little so that the neck is supported. Also Botox shots can really help too
My husband also hangs his head and its difficult to get food and drink down so i use a neck pillow and turn it side ways to support his chin a bit all though i sometimes have to hold his head back a bit to get drink down. But neck pillow is a big help. Lots a hugs to ya
Hi there
I have asked for a neck brace so many times but I'm always refused. My husband hangs his head a lot but they say hex will become too reliant on the brace and his neck muscles wlll either soften or harden and trying to lift head is a form of physio for neck?? I "smoothie" two meals and have soft food for third. I am still waiting to see if NHS will fund an "echo voice" for his very quiet speaking.
What's an echo voice
Hi there an echo voice is like a small microphone, comes round side of ear to front of face so when they do speak we can actually hear them and they maybe join in a conversation. Bit like you see people on TV wearing. Not holding my breath but fingers crossed.
Thank you that's very helpful . I have looked on line . Could you tell me the name of yours , or remind me have you not had it yet .
I get so mixed up these days . Lol
Not had it yet, like everything to do with a disability we have to wait for funding, but if I get it I will be cheering from the rooftops
I have tried all sorts of things , John is unable to open his mout or raise his chin as well . Such a. Worry .,I roll a soft tea towel and put around his neck this at least helps keep him dry while catching the drool . I have bought some soft neck pillow , from Sainsbury . I use one around his neck while laying him back , I do worry then because the mucus gets so thick and he cannot breaths .
I use these pillows under his armpits to help support those as well .they are nice and soft but firmer then some .
Will try anything .
C has an electric wheelchair which I had to buy. I paid extra for shoulder straps which keep him upright whilst supported and I also had side pads added which support him if he flops sideways. If he is on his commode I hook the loops of his hoist sling around the handles. This stops him falling forwards then. In his rise recliner, I have it tilted back unless I'm feeding him and I wedge cushions under his arms between the seat and his body. He still flops forward if given the opportunity but less often and with more difficulty.
X
Bev I don't quite understand what you mean when you say you hook the loops around the arms of commode chair , ah I have re read it u don't mean the arms it's the push handles !!
How do you manage to keep colin comfortable when he is reclined in his armchair . It hurts johns legs when they are stretched out ,I would imagine a sort of cramp pain . I so try and roll a small pillow under his knees
Would the shoulder straps be any good when in armchair . Like u I place pillow under his arms . I recently bought some knock pillow , my daughters input . minions ! I have been using those under his armpits .
In Sainsbury , I think they were ten pounds but they are good ones .
What is a knock pillow? Colin doesn't seem to get pain in his legs but he can move them. He bends his legs and hugs his knees. The trouble is, when he does that, I have to hoist him back as he slips down on his chair. I don't know how we can get straps on his armchair but I recline it unless eating and then recline it slightly to keep him upright. It's not easy is it?
X
Thank you for the great advice everyone, the neck pillow sounds like an idea I can get today but the others I may take a while to get, such as a specially adapted wheelchair etc. I am trying to contact the OT etc to get help and advice but you all know how long that can take !!
xx
M was given a airline style cushion neck support by her hospice and I have bought a couple more to rotate as they soil from drool. M likes to rotate them so the cushion is to the front not back which also means her head is supported from forward fall also I think it warms her neck. M wheel chair has a head cushion which holds her head from lolling side to side while the ability to tilt the whole seat not just the back means her head does not fall forward. Get your OT to refer you to the local wheelchair service who will be able to provide the correct chair but be aware takes up to 6 months.
Best wishes Tim
Wish we had had one of those chairs , I mainly just use the commode chair now to move him from room to room . I keep threatening to have the carpet up and wooden floors laid but not so easy now to have it done with John as he is .
I use the wheelchair for outside only at present, inside as I mobiliser her still, though getting difficult, from chair to chair, toilet, bed etc, we have a stedy for times when she cannot get the legs right as she can still stand with assistance. The wheelchair inside will be when her standing declines. I hate it but the best thing for wheels is laminate flooring had it fitted last year horrendous mess and costly but so much easier to move M on. Only carpet in bedroom sometimes think mistake not laminating that as well after accidents.
Best wishes Tim
I should have had it done in the first place I have it in two bedrooms. Yes one of the reason I need it it accidents ,,!!
Lots of jobs need doing but not being able to move John easily make it very awkward . Cannot even spend our money now .
Johns not been outside for two years now .
My house has hard wood floors. Church has carpet. Every Sunday is a test to my faith that B can walk! Text book says tennis shoes. I say poohy! I bought B some low resistance shoes. Smooth soul but not slippery. Not the best, but much better than rubber. Even with the hardwood dad still falls and of course the getting back up on a smooth surface can be a trick!
What does one think about that large plastic mat runners (that roll out on carpet 1mx18m. I wonder, if well attached, if that would help the smooth surface needs.hmm
AVB
Would this b the J neck pillow . I have just bought one and have order one for myself . It's very good , I also have cervical spondylitis .
Thank you Tim, I have tried to get hold of the OT this morning but she was out, so I await the phone reply. I think the neck cushion sounds good so I will try to get one today.
xx
Hi mum had a chair with a head support and if I reclined it she didn't tip forward also I used the memory foam neck support travel cushion they were great x in fact I found pieces of memory foam very useful . Xx
She looks comfy in that picture!
Thank you, I think the neck cushion is definitely the way to go , at least to begin with.
xx
Can I recommend memory foam ! It became my best friend . I got a few neck support cushions took the memory foam out and cut it into 3 roughly equal pieces ! I could then use these pieces in any way I needed to to make mum more comfy, especially with her arm contractures . Hope this may help love Louise xxxxx
Thanks Louise, sounds great, certainly worth a try. Things are becoming more difficult because it is not easy for P to eat while his chin is on his chest.
Xx
I have been putting John back into bed a lot more his head still dropped forward bug his body is better supported . I don't call it giving in I say I'd making the best you can do to keep at least big more comfortable
Trouble is then the mucus builds up I am cleansing clearing all the time . Not very good on his side .
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