21 Neck Brace

I have lots of neck brace experience. My severe neck weakness and neck drop began gradually following my ALS diagnosis. It is more difficult to deal with because I also have spinal arthritis and disintegrated disks in my neck. The neck drop complicated my balance issues to the point that I needed to use a rollator walker. It has also caused chronic neck pain.

 

Initially, I just used my hands as support when my neck got fatigued. My first actual brace was a standard soft neck brace that provided minimal support. When I needed more support, I began using a lightweight “Head Master” brace provided by the Mayo Clinic. As my head drop worsened, I researched neck brace options and learned that Hanger Clinic, which provides orthotic and prosthetic devices, had built a prototype brace for ALS patients. Our local Hanger Clinic office said they didn’t know anything about it, but they could find me a brace from a manufacturer’s catalog.

 

Although it was never stated, it seemed to me that it was assumed that when the Head Master was no longer adequate, my next option was a wheelchair. I was not in denial, but I didn’t want to seriously consider that as an option yet. This motivated me to take my exercise program even more seriously.

 

So, I had our local Hanger Clinic orthotist fit me with their standard full cervical brace, which was designed to be worn temporarily following surgery or while injuries were healing. Although it was uncomfortable and restrictive, it seemed to be my only option to avoid a wheelchair. This type of brace is not designed for a severe head drop, which puts great pressure on your chin.

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I spent several years working with orthotists, physical therapists and even a seamstress trying to come up with a chin system that wasn’t as painful. At one point, I even tied a string from my brace to the belt loop on the back of my pants to take pressure off my chin. I thought I had a possible solution until, while traveling, I quickly needed to lower my pants in a restroom. I will leave the details up to your imagination. It was as if the brace manufacturer never anticipated that a patient would have a neck drop or that they needed to have someone field test wearing the brace for several hours.

 

Because the muscle tissue on top of my shoulders atrophied many years ago, I sleep on top of a sheep pelt to cushion my shoulders. One day, while looking at the pelt, I thought that maybe we could rig up something like this on my brace chin support. It turns out to be the best thing we have come up with so far to avoid pressure sores and minimize discomfort. I have learned to take my brace off, although I need assistance to put it on. This means I am constantly interrupting someone to assist me. It is what it is, and I am grateful that my orthotist is able to keep my old brace functional.