Re: a home made neck brace design

[Guest guest]

Elliot,

Several comments about your neck brace which sounds like a good example of

" making the best of a lousy situation " .

* Beware of buying hardware store foam products for skin contact. Often foam

products use lead based agents or other skin irritants, a plastics store can

often sell you a human contact polyurethane product which may be more

expensive, but much less of a skin irritant. Do NOT put hardware store foam

products in your mouth or against your skin (especially open sores) for

extended periods for ANY reason.

* Dystonia is best treated with exercise as you say. However, dystonia can

get so bad that exercise is not enough. In that case the brace would make

things worse and Botox shots along with the exercise should be considered at

least. The shots can weaken the cramped muscles and allow movement - coupled

with exercise this (Botox shots) worked well for Charlotte.

Take care, Bill Werre

=====================================================

Elliot wrote:

> 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/

>

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