a home made neck brace design

[Guest guest]

Hi,

thanks for the responses to my previous inquiry. sorry I haven't had

a chance to reply yet.

The general idea of the responses I got was that dystonia of the neck

is a really agravating issue for a lot of people with MSA, and that

it's hard to find a neck brace that helps. That has been my dad's

experience with MSA.

We recently spoke with a doctor who specializes in neck braces and he

said that with the type of dystonia that my dad is displaying, that

seems to me in my limited experience to be typical of MSA patients,

first of all it's not a common type of dystonia, and second of all

it's one where it's difficult to help with a neck brace. we're going

to meet with him and see what he can come up with, anyway.

I thought I would pass along a neck brace strategy that we've

developed that perhaps might be useful for others.

Basically, if a chair has a high back that extends up as high as the

head, you can take any kind of belt and strap the head to the chair,

applying the belt around the forehead. Or, if the chair has a back

that is at least shoulder height, depending on the exact shape of the

chair, the belt can be applied in the same manner around the

forehead, and then drapped over the back of the chair, with weights

attached to the belt, this translating the force of the weights into

a direction that again more or less pulls the head straight back thus

helping to hold it in an upright position.

My dad's experience with the " head strap " as I call it for lack of a

more asthetically pleasing name, is that it does provide him with

relief. We've used this in the car on a long trip, and in an easy

chair, and since it does seem useful I'm going to fit his wheel chair

with it as well.

The physical therapists that we are seeing think that it is important

to hold the head up, since if the head is allowed to " hang " down, it

causes the tendons on one side to get extended, and on the other side

to get contracted, so basically the whole muscle and tendon structure

adapts over time to the position that the head stays in the longest.

Given the discomfort that it causes my dad to have his head hanging

down and somewhat to the left, (the position it has settled into over

time,) it is of course preferable that the neck not be allowed to

conform to this posture in a permanent capacity.

To the other extreme, yes, it's not good to allow the muscles to

become totally dependent on the neck brace, as they might if it is

worn all the time. Therefore, the PT suggests combining the neck

brace with a regim of exercise and massage... holding the neck up

for a while, then removing the support to allow the neck muscles to

work as much as possible, then replacing the support after the head

begins to hang down again.

The other concern that the PT had was that supporting the head with a

strap on the forehead could tilt the head backwards, pivoting it at

the base of the neck, which is not good for the neck or the spine or

something. It is preferable to have the effect that the head is

pulled straight back, such as you would obtain by applying relatively

equal backwards pressures to the forehead and also the chin, rather

than causing the head to pivot such as could be caused by applying

backwards pressure to the forehead only. Given the complexity of the

neck and all the different muscle groups that compose it, one really

should work with a physical therapist to assist you with your

strategy for any neck brace rather than to try and hook something up

and see what happens as you potentially could cause harm. Also,

results obtained will be much better if you work with a physical

therapist rather than use a neck brace alone.

Getting back to the actual design of the " head strap " that we have

rigged, we have found so far that a transfer belt can be used as the

belt. Also, I have found a mysterious material in the " insulation " /

" plumming " section of Lowe's Home Improvement.. It's a strip of some

kind of poly-something-or-other material that's similar to packing

material and I guess is used for wrapping around pipes.. it's about

4.5 inches wide and maybe 1/4 inch thick, and 50 feet long, and

pretty strong (it doesn't tear), and the color is almost iMac Blue...

That combined with " Binder Clips " from an office supply store is

pretty useful for this design in some situations.

So I thought I would pass that along in case it might be useful for anyone.

--

Elliot

elliot01@...

www.xenopink.com/elliot/