Dear Meredith,
I had been meaning to contribute to the "voice problem" thread for
some time; please forgive the late arrival. I hope what I lose in
tardiness I make up for in length!
We had similar voice problems with my Mum. So this is amateur
experience, not professional opinion - treat with due caution :-)
If you were in the UK, a Speech Therapist would be very beneficial
- they have lots of different bits of equipment and techniques to
help you. Presumably there is a US equivalent, make an appointment today!
(this is true even for those of you who do not yet have bad speech
problems - I understand there are some exercises you can do regularly
which can keep things fitter for longer).
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There are three approaches to take when the Parkinsonian voice becomes
difficult to understand:
a) Amplify the voice.
b) Provide some sort of device to help them communicate using
other parts of the body - i.e. a typewriter lets them
use their hands to type. These allow the sufferer to play
an active part in communication.
c) Use various techniques to work out what the sufferer is
trying to tell you (here the sufferer is passive).
Perhaps the overwhelming key to effective communication is familiarity
with the sufferer. The sufferer's main carer is going to be a much more
effective listener than someone off the street, just because they know
more of what the sufferer is likely to say.
Amplifiers:
===========
We never really had much success with these, for two reasons:
- often the problem is not only how loud speech is, but also
a difficulty in making distinct sounds.
This is similar to the problems Parkinsonians have moving their
limbs - not only do they lose "strength" but also coordination
(I put "stength" in quotes because whilst PD's will often be
frighteningly strong, this strength is often uncontrolled).
- often the physical amplification device is cumbersome when
placed in the PD environment. Life is complicated enough
without microphones, leads and speakers :-)
Having said that, I would be very interested in any success people
have had with voice amplifiers. It is an area I have little
experience of.
Active Aids:
============
This is a whole range of gadgets, some technical and expensive,
others cheap, cheerful and effective. The best thing about this
"active" communication is the sufferer is still controlling their
communication, which is obviously preferable to the passive
techniques described below.
You should find these aids a great help - obviously they aren't
perfect, but they will at least provide something. Proper "
conversation" is often not possible with these devices, as the
process is constrained by how fast the user can type.
- Stroke Charts (Alphabet Charts)
These are simple pieces of card with the letters of the
alphabet and a few pictures of common words (like "TV" and
"book"). People call them stroke charts because they were
originally used for stroke patients.
Stroke charts are useful for impromptu problems, small
requests etc. The problem is you (the carer) keep forgetting
what letters have already been typed. But they are small,
reliable and don't need batteries, so we always kept one to
hand for when all else fails.
- Computer aids
All variations on a theme, but basically these are a keyboard
and a screen. The sufferer just types the message out, letter
by letter. There are lots of different manufacturers, so there
should be something suitable.
In the UK there is a device called the LightWriter, which we
found to be the best of all these devices - this was our main
communication aid and an absolute gift.
It is roughly the size of a VHS video cassette, with a display
for the user and one for the carer. They do all sorts of
adaptions as well (large screens, bigger keyboards etc.).
Maybe there is a US equivalent, but I can post details if you
want. The price of the model Mum used was around 800 UK
Pounds, but we got it loaned free on the NHS.
These computer aids are much more effective if you, the carer,
attempt to guess the rest of the word/sentance, to save the
user unecessary typing. i.e. if they type "te" you can start
guessing "television?" "telephone?" etc. If you get the answer
right they can start the next word, otherwise keep typing
until you hit the jackpot.
(my device, CANDi, fits in this catergory. But I need Apple
to release a bigger Newton first :-) All the software is
written though).
Passive Techniques:
===================
These passive techniques involve the carer being the active partly
in the communication. This obviously restricts things considerably.
I have divided what I used to do into three techniques. This is a
little arbritrary, we used a mish mash of all these techniques plus
the LightWriter.
- Looking/Guessing
Relax, look at the sufferer's face. Guess what they are trying
to say to you, repeat words you understand, try and guess the
rest of the phrase. Stay calm (if you get frustrated you'll
put the sufferer off).
This is very effective in the realy stages. You are probably
doing this now, as it is the most natural thing to do.
Suprisingly, placing your ear next to the sufferer's mouth
doesn't seem to be effective. Perhaps the visual cues you get
from their face is more important than any extra volume you
might get from being closer.
- Questions and Answers
Ask a structured series of questions:
"Do you have pain"
"Are you cold"
"Are you hungry"
Progressively narrow into the problem. The sufferer can signal
"yes" or "no" in a variety of ways, e.g. looking left/right,
raise hand, stick tongue in/out.
The important thing is to ask the questions in a structured
manner - don't ask too detailed questions first.
- Knowledge
You, the Carer, are by now very good at this game. Just as
happily married couples instinctivly know the other's needs,
you will know what your sufferer wants. just relax and guess.
This only works for full time or regular carers - don't expext
a nurse to be able to do this reliably.
You might find it useful to make a briefing sheet of common
problems and solutions, so that occasional caerers are not
completely in the dark. We had one which listed favorite foods
(chocolate), what to do in times of cramp, etc.
Summary:
========
- there is a lot that can be done.
- go and see a speech therapist.
- technology helps - find a lightwriter or equivalent.
- a few simple techniques go a long way.
- use all the techniques as appropriate - different ones will work best
in different circumstances.
- tell us how you got on :-)
If you want any more detail, please ask.
Simon
[log in to unmask]
P.S. All this is much easier to say & demonstrate than write down.
Roll on the information super highway and video conferencing.
(I realise the subject: of this message is slightly irrelevant; but
these things do tend to spice life up, n'est pas? :-)
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