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.
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.