Communication aids

[Guest guest]

Hi, folks,

Communication is likely the largest obstacle to a person with bulbar

involvement of a motor neuron disease. Not only is it frustrating to

the the person with the disease, it is often more frustrating to the

caregiver, who wants only to do what the person wants or needs and

feels totally inadequate when understanding is not reached.

The easiest and least expensive aid is noting more than a notebook,

sheet protectors and a little time with paper, marker, scissors and

magazines. On one or more sheets, write in LARGE letters simple

items that the user may want: " Bathroom, please. " " Can we go

outside? " " Is there a movie on TV? " " Could I have a drink? " And

anything else you might need. The pages can be turned by the patient

or the caregiver, and the patient can point at the item desired.

Then, make up a page or two of items for each meal of the day. Cut

pictures from magazines, newspapers, or even hand-drawn pictures

Again, the pages can be turned and items selected. The sheet

protectors insure that the book will be in use longer.

The next level would be items like the Polyana 3, Link, and

Lightwriter. I am sure there are others. Further along the list are

items like the Enkidu. Most of these machines will connect to

telephone lines in some manner. Some will even connect to the

Internet.

A few items should be considered when making a purchase of a

communication aid. First, the easier to use the better. Something

with a keyboard will work for many, but the future should be

considered. As the disease progresses and the ability to type

decreases, what then?

Some machines can use a library of pictures and symbols which can be

selected with a touch screen to form sentences that the machine then

says. The Enkidu is one of these machines.

Some of the lighter machines, some models of Lightwriter will also

operate as a SCANNING aid, with a cursor or light bar highlighting

letters and when the correct letter if highlighted, a simple switch

is pushed (pulled, puffed, almost anything) to select that letter.

The communication may be slower, the the object is communication,

which will happen.

Purchasers should consider the long run, especially when the Medicare

will not purchase these items one after the other. Also, an

evaluation by a professional speech therapist is absolutely required

for assured Medicare coverage.

Don

If corn oil is made from corn, and vegetable oil is made from

vegetables, then what is baby oil made from?