Last week I posted the text of my presentation to a seminar for medical
professionals.  Below is the text of the presentation my wife Jo delivered
at the same seminar.


               Reading A Closed Book.

Most of us at some time have picked up a closed book, which has taken our
interest.  What do we do?  We look at the cover, which may show a picture or
scene.    We turn it over and read the summery of the book, sometimes a few
lines is enough to give us the information that we need.  Even the title
tells us something. All in all we get a good idea of what it is about.

But what of the Parkinsonian?  Take them as a book and you have a different
story, or rather no story at all.
Their cover,(or face), does not help. The staring eyes which rarely blink,
masked expression and lack of movement makes a fuzzy picture.  Nothing
definite – no firm movements of the face or body either, which could have
guided us to mood or state of mind…no clues really.

Communication is a two-way process, consisting of give and take, information
and feed back , allowing us to build on what we have received to continue
the process until one or the other ends it with a closing remark.  Humans
are naturally social creatures, and most of us respond automatically to a
friendly face, positive attitude, body language and verbal responses.  It is
strange, therefore to be faced with a person, whom, when we try to
communicate with them, respond with a blank look, very little or no body
language and slow or nil verbal replies.

How do we respond to these types of people in our everyday life? Some of us
feel ignored (which makes us antagonistic to that person), Others, perhaps
feel that they are rather dull, and not very interesting ,(which also causes
a feeling of negativity to that person).

What do most of us do? Some feel there is no point in continuing, others may
press the point, but most will walk away.  We have to remember that eye
contact and body language are not the only forms of communication available.
There is speech of course and the written word.  Unfortunately, the
Parkinsonian does not always have these to fall back either.

They are unable to write their requests easily because of another symptom of
the disease called micrographia, or small handwriting. Occupational therapy
will help with this problem, but it is not a quick solution.

Speech can be a problem too. Those muscles involved,(those of the mouth and
throat including the diaphragm)are affected as well, making movements slow
and sluggish at times, resulting in a voice which has low volume with
inhibited articulation and breathing difficulties. Communication is
therefore difficult, being heard and making their needs known is often a
real challenge.

Speech therapy is available, but again requires perseverance and practice on
the part of the Parkinsonian to improve their skills.

It is important that the person trying to communicate with the Parkinsonian
keeps in mind, that these problems are not always constant. Parkinson's
disease is slow and progressive, but it is also fluctuating, and not the
same for everybody. On any one day the physical capabilities of a
Parkinsonian can change dramatically depending on their drug levels. Their
health status, even the time of day can affect the persons mobility, which
includes their ability to communicate so more effort and persistence is
needed at some times than others.

So it can be seen that different health professionals will need to
cooperate, using their skills separately and together, to improve
communications for the Parkinsonian .  And the more knowledge they have of
the problems faced by the Parkinsonian, the better they will be able to
assess what contribution they can make.

How does the Parkinsonian feel? I wonder.  None of us non-parkies can really
know. We can only imagine what it would be like to be on ‘the inside’.  It
must be frustrating knowing how you feel, not being able to show it openly
and watching peoples reactions to you.

Only the other day a registered nurse, who is an acquaintance said to me,”
Can your husband think when his drugs are low?”  I replied of course he
could, but he wasn’t able to show how he was feeling.

Just last week-end he was sitting on a chair that collapsed under him.  The
restaurant was quite crowded, everybody just looked.  His face was a mask at
the time, but I knew he was hurting.  Eventually he got up, he did not want
to be pulled. (One thing I do know, you cannot pull or push a Parkie).  A
man came up and asked him if he was hurt, as he was having trouble putting
on his jacket. (that old mobility problem again).  Den explained that he was
ok, but he was moving  the with difficulty because he had Parkinson's
disease,(he’s 48).  He was also unable to show appreciation for the mans’
concern in his face because of his blank expression. The man raised an
eyebrow at him, looked him up and down, and, you guessed it , he walked
away, leaving Den to feel whatever parkies feel in those situations.  It
must be a lot of different feelings about himself, and none any of us would
wish to have ourselves.

What can we do to make things better for Parkinsonians when their
communication skills are down? We must take time to read them properly, time
to wait for them to get over to us their needs and wants. There are times
though when we need to find out for ourselves their needs, as the lack of
body language can actually keep people away.
Hard as it is we must not try to mirror their expressions, trying to make a
conscious effort to be just as we usually would be.

We must try to be aware of what is happening, and the mask and lack of body
language is not in response to us, but is caused by the disease.

I still find myself after 11 years saying to Den, ”are you ok?”, or “don’t
you like it?”, so it is an on going problem, and one which won’t go away.

I finish by saying that hopefully understanding the make-up of a
Parkinsonian will go a long way to improving communication, thus removing
the unnecessary isolation and rejection so many of them experience in their
everyday lives.

Jo Greene RN
Caregiver to -
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Dennis Greene 48/11

"It is better to be a crystal and be broken,
Than to remain perfect like a tile upon the housetop."

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http://members.networx.net.au/~dennisg/
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