Status
Not open for further replies.

Alex123

Distinguished member
Joined
May 31, 2014
Messages
128
Reason
PALS
Diagnosis
05/2014
Country
US
State
California
City
Los Angeles
I have bulbar-onset ALS and this last year have had weakness in my neck that has been progressing fast.
At the ALS clinic they gave me different models of neck braces that somehow helped. But I got to a point at which even with the neck brace it was hard to walk as my head was tilting forward. The problem was that it was not only my neck muscles that had gotten weak, but my cervical spine had also bent forward.
So I thought that if I found a way to pull my head back, instead of supporting it through my chin, it might work better. I went to the hardware store to see if I found materials that I could use for a prototype, but had to go back home before finding anything because I felt tired and was coughing too much. Basically, what I was looking for was something that I could attach to my back and have my head pulled back form there. Another day at home I remembered I had a T-square in the garage. I went to the garage and in a few minutes was able to put it together.
So far it has worked much better allowing me to go for walks at the park and I have also used it to go to the ALS support groups. I am sure that there must be orthopedists that can make something based on the same principle and tailored to your body, but I can imagine it would be very expensive. After I finish this post, I'll see if I can take picture of what I made and attach it to a post. The short arm of the square I place near my belt and I use an elastic band (that I had purchased to hold the bicycle in the back of my SUV) wrapped around my waist to keep it attached to my back. The long arm goes all the way up to the level of my head. At the end of that arm there is a hole that is used to hang the T-square from a nail on the wall (when used for drafting). I used that whole to pass through some rubber bands which I also attached to the back of a baseball cap. So the idea is not to hold the head up by pushing up on the chin but pulling back from the forehead. My solution so far has been the T-square (I don't know it they are still used or all drafting is done nowadays by CAD) but If you have problems with your neck brace and are looking for a better solution, you could experiment and look for something similar to what I did. Even if this thing is a little bulky and hard, I have been able to wear it while driving for short distances. I am surprised that the T-square has not broken yet. I am still looking for some material that I can use to make something that can be bent to fit better the shape of my back, but haven't found anything convincing yet. So I am still using the T-square. I hope this idea can help someone.
 
My Chris used all kinds of things from hardware stores in the early months to help with different things - quite amazing what one can come up with.

Even if this only helps for a while, it's worth it I'm sure.

Maybe you can find a student that would like to work with you on making something that could take it a bit further?
 
Alex - I admire your ingenuity! I have several home-made aids to help me retain some independence. The latest is a two-step stairway beside the bed so I can get in and out of bed on my own. Previously, someone had to lift me onto the bed. I'm short and cannot get my big rear far enough up on the bed to be able to lift my legs. My new platform is not too pretty but works great!
 
Alex, I look forward to seeing your contraption! Available thru medical supply companies is the "Miami J" collar. This is a rigid, yet padded cervical collar that is used to ensure proper stabilization following major, traumatic cervical spine surgery, or s/p (status post) cervical spine halo removal. These collars (Miami J) are the gold standard for protecting the cervical spine from injury. Most patients are not fond of them, but they really do the job. Overkill for ALS neck support - maybe/probably? But nonetheless, I think it would be quite effective, especially if other, lighter, flimsier options have failed.
 
Thanks for all your input. I will respond to your comments on different posts but first I will try to post a picture or two of the T-square.
 

Attachments

  • IMG_1864.jpg
    IMG_1864.jpg
    56.1 KB · Views: 507
  • IMG_1865.jpg
    IMG_1865.jpg
    52.7 KB · Views: 477
Tillie,
I don't know any student that could be interested in building something like this, but I have a friend who has told me he could help me. Definitely, if I want to build something better I will need help as my arms and hands are getting weaker, which makes it very hard to do things that used to be easy for me.
 
Alex - I admire your ingenuity! I have several home-made aids to help me retain some independence. The latest is a two-step stairway beside the bed so I can get in and out of bed on my own. Previously, someone had to lift me onto the bed. I'm short and cannot get my big rear far enough up on the bed to be able to lift my legs. My new platform is not too pretty but works great!
Well old dog, I guess when we can't find affordable gadgets to solve our problems we have to be creative and find our own solution. I am glad to hear that your platform is working well.
 
Alex, I look forward to seeing your contraption! Available thru medical supply companies is the "Miami J" collar. This is a rigid, yet padded cervical collar that is used to ensure proper stabilization following major, traumatic cervical spine surgery, or s/p (status post) cervical spine halo removal. These collars (Miami J) are the gold standard for protecting the cervical spine from injury. Most patients are not fond of them, but they really do the job. Overkill for ALS neck support - maybe/probably? But nonetheless, I think it would be quite effective, especially if other, lighter, flimsier options have failed.

Buckhorn, I do have a Miami J and also an Aspen and a soft collar. But none of them worked for me. I have seen that both companies have a brace that is not only a brace but has a frame around the waist. But that frame links to the neck brace and I guess helps in preventing it form tilting forward. But I am not very convinced about the way they are built. For the moment the T-square is working better for me. Pulling the head back from the forehead seems to work much better for me than resting my chin on the collar. Although most of the reason for this is the curvature of my cervical spine, I also have some problems with my mandible. Thanks for your suggestion anyway.
 
Alex , I love your invention. I can no longer walk after 3 hours after waking for this very reason ! :)
 
Great ingenuity Alex! I'm glad it is working for you!
 
Thanks for posting your very ingenious contraption. I have often thought of ways to support my neck when I sit, and this head strap version seems better to me than a chin rest. I shall have to up my game and try to affix something to my chair for the same purpose. Inspirational!
 
Alex , I love your invention. I can no longer walk after 3 hours after waking for this very reason ! :)

If you can walk for three hours that means you are doing very well. I was having trouble going from the parking lot to the doctor's office at the hospital. Please let us know if you manage to put something together that works for you.
 
Thanks for posting your very ingenious contraption. I have often thought of ways to support my neck when I sit, and this head strap version seems better to me than a chin rest. I shall have to up my game and try to affix something to my chair for the same purpose. Inspirational!
I have seen people wearing a strap around their head when sitting on the wheelchair.
I am not using anything like that while sitting at home because I can just rest my head against the back of the chair (it is an office chair). That's the chair that I use most of the day. I bought it when I started feeling uncomfortable while sitting on the regular office chair that doesn't have a head rest. At the time I bought it I thought at some point I might have to put a strap around the head rest to hold my head up. But so far I have felt comfortable leaning my head against the chair's head rest. I hope I can continue to do that for some time. Please let us know if you find something that works for you when you sit.
 
If you can walk for three hours that means you are doing very well. I was having trouble going from the parking lot to the doctor's office at the hospital. Please let us know if you manage to put something together that works for you.

Oops, I am terrible at communicating concisely. I am only able to walk the 12-15 meters to the bathroom then couch , and only within that first 3 hours and a maximum of two trips. Otherwise I end up doubled over while someone scrambles to get the chair. Perhaps I should show my dad 'laurie' your invention, he's pretty handy & will let you know if he's successful!
 
There is a commercial product made by Suteki Designs available online, that bears some resemblance in terms of being a neck support from the back. Kudos for finding your own best solution, Alex.
 
Status
Not open for further replies.
Back
Top