Neck support

[Monky]

Hi Everybody,

I will first tell you about our situation first.
I am Monique and I live in Holland. My dad and brother live in the US and my dad has ALS. At this point he can hardly talk, can't stand, can hardly use his arms and hands, and this all happend within a year. He is going down faster than we can adjust to and living in Holland doesn't make it easier for us.
I have a brother who lives near my father and my sister lives with me and my Mother in Holland. We try to come as often as possible and we see he stablizes with each of our visits. You can understand that it is very frustrating to live so far away and not being able to be there.

I'm in the US now for 2 weeks and I arrives last Sunday. Yesterday we went to the ALS Clinic in Burlington Mass.
with the PT and Neurologist and everybody we could think of, we talked about the new problem of the neck. My dad can't hold his head up anymore. It bobs to the side and forward. This started a week ago.
Now the PT said the Headmaster was the only thing that would work for him and she showed it on him... I have no idea how she could even suggest that, since his head kept falling to the side. It's also giving him pain... that strain in the neck. It is also not helpfull to use his speach computer. He has trouble talking and this headmaster is supposed to keep his head straight and it doesn't so he can't use the speach computer. The PT also said that a bigger brace would be more uncomfortable and would ristrict his breathing. They say that is more important than comfort.... I'm not sure I agree since comfort dictates the quality of the life he still has.
This whole thing is really making him depressed.

Now... I would really like to hear from any of you if you have had a similar problem and how you dealt with it. I really hope I can help him in the few weeks that I am here with him. My next visit would be in December... He thinks he may not be there anymore... before Christmas...

Groetjes,
Monique

 

[irismarie]

i have progressed roughly the same as your dad and my kids live in UK while i am in France so quite a parallel. My kine just massages my neck and shoulders to help the pain and I just rest mu head on the wheelchair head rest. Can still hold it up but it is not easy. I cannot give any advice otherwise
I am glad your father has your brother to help him and that you are able to go and stay.
Love
IRis

 

[chriss]

Hi Monique,

I think we have a similar problem but no answers I am afraid. My husband is on the bipap 24/7 except for taking the mask of for 30 secs to a minute to eat or drink(can swallow normally). The catch is that the only way he can tolerate the mask off at all is sitting on the side of the bed in a slightly forward position. As his neck and shoulder and trunk muscles have wasted he sits in a very collapsed position with his head dropping forward onto his chest, which of course makes the breathing worse. I asked the palliative care nurse for help, who asked the OT who suggested a blow up travel pillow. It was not a success. Then I looked up the oxford and headmaster collars on the internet and asked the physiotherapist at the hospital if we could try them. She said she could post one out but it may not be the right size. I said I needed it fitted professionally and they said they could visualise the fitting over the phone!. The headmaster collar did not work because his head is now at a 45 degree angle when sitting up so the back of the collar was pulling the neck further forward. I asked for other suggestions and after an extensive 3 seconds she replied over the phone that well the only thing for us to do was someone to hold his head up when eating and drinking. I don't know how that was supposed to work as most of the time it is just me and him for food and drink and I already juggle feeding him and taking off and putting on the mask. I am really concerned that a time may come when he wont be able to sit on the side of the bed at all and then he wont be able to have food and drink. He missed the chance to have a PEG as his breathing dropped to 31% before they could do the operation. I hired a private specialist OT who brought in a prosthetics expert but it is three weeks now and he has not gotten back to us and I have sent emails to try and get a response. So I too am very interested if anyone has suggestions for head support. Sorry though I could not be a help to you,

Take care

Chris

 

[abbas child]

I'm looking at other head supports (and am on my way to needing one myself). Here are some ideas to look up: TruLife L.A. Wire Frame Cervical Brace, the "Aspen Vista Collar", the Ossur "Miami J" Collar. The "Aspen Vista" is said to provide lateral support. As you said, Monique, the Headmaster is not always preferred due to lack of lateral support. One problem... I really believe all of these would require a PT to do a fitting, as they don't look like "off the shelf" products.

Look at the threads at the bottom of this page. There are some interesting ideas there.

 

[abbas child]

Use the search feature at the top of this page for "neck brace", and check out the thread called "Neck Brace--Homemade Collar".

"Search" is a word in the blue strip going across the page, above the yellow area. There are also some threads listed at the bottom of this page--I haven't looked there yet, but will.

 

[joelc]

I tried several head supports and finally gave up. Nothing was suitable. So I recline my wheelchair and use the headrest. Being slightly reclined my head stays up and rests in the headrest.

 

[stephie]

My husband has the same issue with the head falling forward and to one side. As far as falling forward, the only we can do is lean him back a bit. To keep his neck straight, I made him a small pillow. I bought a memory foam pillow and cut it (not easy to cut, but it worked!) so that it is small and very thin. I put it behind his neck and the base of his head and fold one end over (so that it is double-thick) on the side that his head usually falls towards. This makes the pillow twice as thick on the side he would normally lean his head towards. The memory foam is soft enough so that it is very comfortable, and the way it forms to his head keeps everything in place.

Part of my husband's problem with the head tipping to one side seems to be muscle tightness. Even though his neck is very weak, he has some spasicity. A lot of times if I gently move his head to both sides a few times to stretch the muscles, it helps me to get his neck straighter with the pillow.

 

[monina01]

hey Monique great minds think alike. I was going to ask the same question and saw you beat me to it

(I am Moniques older sister, also living in Holland...). The message posted before mine sounds like an interesting option. Think that will work?

 

[Al]

Take a look here.

AL

https://www.alsforums.com/forum/gen...als-mnd/3521-neck-brace-home-made-collar.html

 

[Monky]

Hi everybody,

I want to thank you all for your responses. Sorry I didn't come back sooner, but I wanted to be with my father as much as I could. We tried almost everything you all suggested. We ended up with the fallowing. My sister's husband actually came up with the construction and by brother made it work for my father.

To keep his head from dipping forward too much we bought a flight pillow from the website Skymall
We turned it slightly forward and made the back less high with tape. That way he could still comfortably recline in his wheelchair.

To keep his head from falling to the side, we attached a clamp to the headrest and put a towel around the metal part.
I know it works in the morning and I don't know whether it works when he is more tired like at the end of a day.

I thought I would put it here, because who knows... it may work for some of you.

Thanks again for the help and I want to wish you all the best.

Monique

 

[Al]

Posts with links or pictures have to be moderated. Sometimes it may take a few hours because of the time differences. That's why you kept posting and they weren't showing up. Sorry about that.

AL.

 

[Monky]

Thank you, Al.

I realized that after I sent it the third time I was finally able to read the text that said it had to be moderated first. That text doesn't stay long so I missed it the first few times. I also looked on the forum and saw your explanation when other people posted the same problem. Ah well... sorry you had to go through my story 3 times.

Monique

 

[Al]

No problem. Glad I was able to help.

AL.