Hi folks
Liz can no longer keep her head upright and she is forever looking down.
Has anyone got experience of using something to keep the head looking forwards?
She has no pain when I lift her head back. She just can't keep it there.
I will be telephoning the Neuro OT tomorrow, but it would be good to draw on folks experience here too.
Thanks
Kevin
Sorry Kevin not got that problem xxxx
How distressing, Kevin. I hope the OT can help. The problem has come up before. I believe folks have recommended those u-shaped travel pillows. We had a reclining wheelchair that had a "moustache" neck support, they called it, two rather thin, curved, padded wings that came down and forward from the headrest, which theoretically would keep the head from lolling but only if the occupant was tilted back at least a little. I can't say how much it would have helped. We didn't have long enough with it. Best wishes and hugs, Sarah
I also have the tilt recliner chair for Hubby, but he feels he is choking constantly and can only be tilted back slightly. The head falling forward is a problem, I use the travel cushion, as it is filled with beads and can be pushed into the correct position, with a linen cloth on it to catch the drool. The tilt recliner is the best thing I ever purchased.
Sorry darling don’t have an answer x
Hi Kevin. Not Jon's problem either but I had a friend with motor neurone disease who had a bandanna round his forehead attached to his wheelchair headrest. Seemed to do the job and he said he liked looking like a pirate!
Best to you and Liz.
Rosemary
Hi Rosemary
Thanks for coming back.
I so like the bandanna idea!
I spoke to the nursing home and they went sheet pale and explained it was too much like a restraint and it might be mistaken for tying her up!
Hey ho, regulations are good, but they can so easily kill off common sense.
Best to you
Exactly Kevin, before getting the tilt recliner wheelchair, I asked about a seat belt, because hubby constantly leant forward, and I was afraid of him tipping out, Noooooooo, it is classed as a restraint, the bandanna sounds a great idea, unfortunately the heirachy has gone haywire with rules
Unfortunately, Kevin, Drew shares this problem with Liz. I had bought a Headmaster head support but sadly Drew's head had been down for so long that it was too uncomfortable to use. He is supposed to be getting measured at the hospital in the near future for a head support but things have been so slow recently that I don't know when that will happen. Also, he should be getting Botox injections next week but I don't feel he's up to being transported to the hospital and I'm trying to negotiate a home visit. It has taken the hospital 2 months to arrange the Botox and in the meantime Drew's condition has deteriorated partly due to an adverse reaction to Baclofen. I would ask your Dr to refer you to the Rehabilitation Unit at your hospital who should be the people to give you the appropriate equipment. Good luck.
Margaret
Hi Margaret
I'm sorry Drew has had a rapid deterioration. It's miserable isn't it?
Gosh, twelve months is a lifetime with this illness. When Liz had botox for her jaw it was a simple procedure done in her wheelchair and took about five minutes. So hopefully you will get a home treatment.
Liz is at an earlier stage in that she does not find it uncomfortable if her head is lifted for her.
I telephoned thee local neuro team she is on a waiting list to be seen in a month to six weeks.
I think we might try a head cushion in the meanwhile. Something a little more supportive might be better. I'll ask about head supports though, thanks.
Best of luck to you and Drew too.
Hi Keven, Barry did not have this problem. Have you tried a neck brace.
Althea
Although my husband can hold his head up if/when he chooses, we are going to try a device called a headmaster collar. It was designed for those with "head drop," in his case a right side ataxia with his PSP. I am doing this for the "muscle memory," to avoid the neck from freezing in the wrong position. It allows the head to move left to right and just supports the chin.
symmetric-designs.com/headm...
We tried a soft neck brace but it was of no use. Other cerivcal collars seemed to restricting.
Good luck! Christine
Christine Brilliant!
I bought a cheap version as it is a stand in until the OT comes out.
amazon.co.uk/gp/product/B00...
Thank you!
Kevin
Hi Christine
I bought a cheaper one in plastic and it was awful!
Far too small an area on the clavicle and plastic, sweaty foam.
Do I have delved deep and bought the one you recommended.
Thanks
Kevin
Hi Kevin-1!
In my case I also observe that trend but it does not seem worrying.
Within the protocol of gymnastics and during six days a week she does neck exercises: up, down, right turn, left turn, fold to the right, fold to the left, shrug the shoulders .... 6 times each movement.
Doing the exercises without help is twice as effective as if you are helping something and almost no value if all the effort is done by the physiotherapist.
Maybe this helps.
Hi Luis
Yes, exercise is very good as you say. Sadly Liz has moved beyond that and the physio. (Health Trained) is working to keep movement only.
Best you you
Kevin
does Liz's chair recline? sometimes if u tilt it back slightly, there's less gravity for the person to have to hold their head up against .
Hi Catherine
Yes, she does. It works well for her. You know we should make more use of it.
The problem is that she spends significant amounts of time in her wheelchair and eating and drinking exacerbate the problem.
Thanks for coming back.
Best
Kevin
Kevin, have I have seen headbands that are worn across the forehead and attach to an anchor in the back. I don't know where in St. Albans you might find one, but it appears comfortable.
Give Liz my love and a big hug. Take care of yourself. Your crazy Cajun brother, Steve
Hi Steve
Thanks - I seem to have found something as a stand-by (Amazon) which hopefully will work until the OT get's to assess.
I will pass the hug and love on.
Meanwhile warm wishes to you both
Kevin
P.S. an occupational therapist might custom make something. I am currently wearing a custom made splint on my broken little finger on my right hand. Be strong brother.
Ah, the melti plastic stuff.
Cleaver isn't it.
Ah, you be strong too.
Warmly + hugs
Kevin
My dad started to allow his head to droop and I was afraid that he would get stuck like that, which would make eating/swallowing extremely difficult. I asked the Neuro Matron to intervene and for her to request the OT to measure him for an appropriate chair to keep him comfortable. He was by this time in a nursing home in the U.K. unfortunately dad died before anything could be organised. However, I think I am correct in saying that if the patient is in a nursing home it becomes the home’s responsibility to source an appropriate chair or bed or whatever is needed to care for the patient as time goes on and the illness progresses. Dad had CHC so I don’t know if this was a factor or not. I did see another patient in a very advanced chair with all sorts of tilting mechanisms and head rests etc to keep his head and torso in a comfortable position and I heard the nurses talking saying it had cost the home over £4000 so it could be worth speaking to the Home or Neuro Matron/OT. Good luck I hope you manage to sort something ASAP. Ruth x
Thanks Ruth
That's really good info. We hope to have an OT assessment in 4-6 weeks.
Meanwhile I have bought a cheap cervical collar.
amazon.co.uk/gp/product/B00...
It might keep Liz going until the OT arrives.
Yes, CHC may have helped I think, or it was done through the Soc. Serv. loan scheme.
Thanks and best to you
Kevin
x
Good luck to you and Liz. Thinking of you. Ruth x
Thanks and the same to you... I keep telling myself, "keep up with the changes and look after myself too."
That’s the spirit! I know it has often been said that this is a group no one would wish to be a member of but it’s the best group to be a member of if fate has left you no choice in the matter. You helped me immensely with your advice regarding CHC etc. when I first became a member and I greatly appreciated your help and everyone else’s who passed on their hard learned knowledge. Keep going, Liz needs you now, more than ever. Ruth x
this is a copy of a post I gave to Ruth in response to her idea that things like appropriate wheel chairs (and other items) be easily attained :
I think that if we PSP caregivers, hospitals and websites, could research anything, it would be the expected needs of the PSP patients. There should be an immediate inventory; a list of items that would be and has been used with success for these patients. You don't give a person with a broken leg an arm sling nor do you make him wait till his bone is healed to finally provide him with a leg cast....If we had a list of stuff our loved ones were going to need we would at least know that there is such an item out there and order said item when needed.....
Andrea
That would be nice if the Dr. neuros had such a list - even if you have never heard of PSP - surely in your training you have come across neurodegenerative issues for pete's sake!!!!!!!!! If your not in a research lab or a brain surgeon - your on the front lines - catch up with us
I totally agree with you Ruth
I think that if we PSP caregivers hospitals and websites, could research anything, it would be the expected needs of the PSP patients. There should be an immediate inventory; a list of items that has been and would be used with success for these patients. You don't give a person with a broken leg an arm sling nor do you make him wait till his bone is healed to finally provide him with a leg cast....If we had a list of stuff our loved ones were going to need, we would at least know that there is such an item out there and order said item when needed.....
AVB
I also think Andrea that it is down to the old postcode lottery of your local health authority and also the personality of your Neuro Matron. In the U.K. it is they who co-ordinate the multi disciplinary team that is required to care for PSP patients properly. A bit off topic but I found that they were the most important one for my dad, they should guide you through the end of life wishes, it is not pleasant to face and professional and timely assistance would have saved my dad about three months of suffering in the end as he did not wish for any interventions but as it wasn’t on paper and witnessed, the hospital was bound by the legal system to do all in its power to keep him going, only to suffer more. Needless to say that when he begged us to make them stop we made sure his wishes were signed sealed and delivered but we so wish it had been done sooner but no one expects such a dramatic downturn and of course no one wants to face their own mortality, indeed dad said he didn’t even realise he was ill until he ended up in hospital! The other major advice should be to get an LPA and Will in order ASAP as PSP is such an unpredictable enemy. I’m sorry that’s a long one and not on topic but I found in the end for dad it would have helped him as much as equipment. Wishing you all the best. Ruth x
What (another!) valuable thread this is! Thank you everyone for your contributions. Thank you for asking the question. We are all taking notes, guys ...
Yes, isn't it
Folk here are great.
Just for info I got this until the OT can assess in six weeks time
amazon.co.uk/gp/product/B00...
Good to see there are some different options: having some technology to help us also helps us feel not so alone with the problem...
Ben has a horseshoe shaped cushion on his recliner chair, arranged by the OT it supports his neck comfortably. Only problem is He does tend to get a bit hot and has to have his head released to cool down. He always asks, in his own way, for the neck cushion, as it obviously gives him great support and comfort. Xxx
Thanks Katie
I was wondering about the heat.
As a temp. fix I have gone for this
amazon.co.uk/gp/product/B00...
Hopefully the OT will visit in six weeks and sort us out properly.
xx
Hi Kevin,
P had that problem and he is now in a tilt and space chair which is tilted back so that helps - but we have to sit him up every time he coughs/chokes. I tried a travel pillow but round the front, under the chin with variable success.
xx
Thanks
That was really useful info. I nearly got one of those.
As a stand in, until the OT can get to Liz, I went for this
amazon.co.uk/gp/product/B00...
Looks like that would do the job but P was sensitive to anything round his neck so I thought a soft, velvety cushion/travel pillow was the best option for him. I also tried a vibrating heated horseshoe shaped collar but he was none too keen on that.
He objected strongly to a neck brace when it was fitted by paramedics after one of his falls and when it was removed several hours later he had severe bruising around his neck, so I understood why he wouldn`t tolerate that again.
Trial and error I think !
xx
Hi NanB
I think this is where we are headed.
Does he have a problem with his head rolling to one side?
xx
We have this problem with my mom so she is usually in the reclined position which prevents this from happening
I think we are heading there too.
I am looking for something for when she is in the wheelchair.
Best to you
and thanks
Kevin
We are in Canada (have to pay for chairs out of pocket). It takes a while to get a tilt wheelchair so I would advise to start the process sooner than later, unless you have better service. We have a stationary recliner but she has to be moved with a lift and staffing is limited so with getting a tilt wheelchair we hope to keep her more comfortable, and not confined to her room.
Hi
We're in the UK, so though they are free to loan it is best to order for the next generation in advance. 
Well, six - eight week lead time.
Thanks - that is a very good point about keeping her from being bed bound too early.
I've made a note.
Wishing you both the best of it all.
Kevin
This is usually a severe problem during the last year of life. I kept my wife in her lift chair in a reclining state throughout the day. I thought about using a neck brace and asked her neuroligist (movement disorder specialist) but she was against it. I still think it couldn’t hurt. Some of my PSP patients in my support group are going to try it. When I hear how it goes, I’ll let you know.
Ketchupman
Thanks Ketchupman
I wen't for this as a temp measure
amazon.co.uk/gp/product/B00...
Looking forward t their findings.
Best
Kevin
Sorry Kevin, not a problem that Steve ever had. Agree with your call to the Nuero OT. They should be able to help with a specialised wheel chair.
Lots of love
Anne
For Bruce I would recline the chair slightly so that gravity pulled his head backward instead of allowing his head to drop forward. Once there I would (try) to use a travel pillow to support his head from side to side...
Love you guys
AVB Andrea
Hi Kevin this was a real problem for our mum. There were days when we didn’t see her face. We did try a neck brace that the Physio had made for her but she dragged it off every time. My mum wouldn’t sit in a recliner either so we never really resolved the issue. Mum always looked so uncomfortable but wouldn’t allow us to prop her up with cushions. It was all very difficult. Hope you have better luck than we did X
My mam was the most obliging of people. Very gentle and calm. PSP changed her to be stubborn awkward and sometimes quite nasty. None of us knew how to handle her. Best of luck Kevin and good wishes to Liz xx
I had a wheelchairbound handicapped child and used a cotton towel rolled from each end then turned it face down - It absorbed moisture and allowed air to move through material(cotton) . It was washable and comfortable and adjustable!!!!! Yes, The great Oz Life - thought I was so good at caregiving~ gave me another shot at it!!!!!!!☺️(My son was in a group home for the last many of his 29 years.)
It's not just in Oz that life bowls googlies, but twice is too much.
I like the towel idea a lot.
Cheers
Kevin
I said I was going to buy a cheaper one than the one Christine recommended.
I turned out to have poor sweaty foam lining an
I bought a cheaper one in plastic and it was awful!
Far too small an area on the clavicle and plastic, sweaty foam. The part that rested on the clavical put too much pressure into one place.
Its a shame because it was a great concept.
This is where I bought Christine's recommended collar.
completecareshop.co.uk/orth...
Some of the ones on Amazon a one and two hybdred more!
They come in different sizes.
Thanks Christine!
Cheers
Kevin
Kevin
My Hubby has same problem. I use a neck cushion and force it between his shoulder and side of face to keep it from adjoining his shoulder, shaving is a major problem too. I put a linen cloth on the cushion for the drool.
Sorry Kevin, not me either
Hi Kevin I do hope Liz is doing as well as can be expected. I haven’t been a the site for a good while. Take care x
Hi Tillyhugs!
Good to see you back.
Liz is in a nursing home now and she does not like not being at home. Sadly her care needs could not be met event with a care agency coming in. So she's a little grumpy with me!
She has deteriorated quite a bit since being in the home despite the care being fairly good. I visit her quite a lot as it is only a 15 minute walk away.
How are you doing?
How is DC?
Best to you both
Warmly
Kevin
xx
Hi Kevin. Hubby had the same problem, very distressing. Sorry we did not find a remedy for it. However, when he was in hospital for a week with a chest infection he received oxygen on the first day which lifted his head up! Unfortunately the effect only lasted for about 5 days. We were advised that more oxygen wouldn't have the same result. I don't know whether that info was correct as he sadly died two weeks later. Maybe something you could inquire about. Good luck and take care. Maddy x
Hi MaddyS
How unexpected. Yes, I will ask about that.
Thanks
Sorry for his passing.
Kevin
x
Dad's head has been in the down position for months, his chin rests on the chest. The neck, shoulder and upper back muscles are so rigid it actually causes more pain trying to move his head up.
Even in a reclined position his head drops down. We've tried a few options to hold his head up but nothing has worked.
While sleeping the bed is inclined with 2 pillows and a towel rolled up at the base of neck to offer some support. I have gently tried to push his head back onto the pillows and it's like pushing on a board.
Ron
Hi Ron
Yes, we are trying to stop Liz going down that route. Physio and a head support.
Have you had a physiotherapist assessment?
The G.P should be able to arrange one for you.
They can be very good at this sort of thing.
Just a thought.
Best to you
Kevin
Head Drooping - Neck Brace??
Need Advice
So Fast...
Cbd and head/eye pain
