Re: a home made neck brace design

[Guest guest]

Re: a home made neck brace design

> 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/

> >

> > If you do not wish to belong to shydrager, you may

> > unsubscribe by sending a blank email to

> >

> > shydrager-unsubscribe

> >

> >

> >

> >