THIS IS A VERY WELL WRITTEN ARTICLE, THAT I READ ON ANOTHER WEBSITE. PETE GAVE ME HIS PERMISSION TO COPY IT SO THAT I MAY SHARE WITH YOU.
I may have a tremor or I may be slow
or I may become immobile for a while as though glued to the floor.
But for a person suffering PD that's
about all there is - isn't there?
Well, erm no. In fact the one thing
that marks a person as suffering PD for most is the tremor or shaking and that
is one symptom that I don’t have. There are many problems that remain invisible
to those outside my orbit or even to those within it. If I count up the number
of signs and symptoms that I have to work around then I get up to 40 and I am
nowhere near the total possible
A collection of symptoms commonly
experienced by those with PD affect the way we interact with the rest of the
world. One of the first may be a "masked face", a deadpan expression
that expresses nothing at all. We don't often smile or grin or make any type of
meaningful expression without concerted effort. When normally a facial
expression conveys so much more than we are aware of. And that deadpan
expression may be construed as being rude or disinterested or perhaps lofty.
Most people are aware of body
language at least to a small degree but it is not commonly known that the words
used in conversation with someone only constitute about 7% of what passes
between them. The other 93% is often hidden from direct or conscious awareness.
This 93% is body language, tone and volume of voice and one more, odours too
may play a part.
With these tools of communication
many subtleties are permitted in normal conversation. But what of these tools
for the victim of PD?
The first that springs to my mind is
the softness, the quiet whispery voice that we develop and quite often we are
oblivious to those listening but for them it is really trying. Fatigue and
breathlessness can mean that sometimes I run out of breath and am unable to
finish a sentence....
One of the first symptoms for many is
the loss of a sense of smell - this, though not particularly significant does
impoverish our lives and encourages the feeling of distance or remoteness with
others as we fail to share the same awareness of our shared environment.
And there's more, we PD people
sometimes drool or dribble if you prefer. This is because we do not
automatically remove by swallowing an accumulation of saliva until an overload
occurs. This is liable to be embarrassing and although not an invisible symptom
is not obvious in the same way as a tremor and also helps to mark out a PD
person as different.
Cognitive symptoms may arise, for
example I sometimes struggle to find the right word and may well settle upon a
word that does not convey the meaning quite as I intended. For some this
problem gets worse and may be exacerbated by also developing hallucinations.
Some people suffer much worse cognitive
difficulties with memory problems and maintaining an attention span long enough
to sustain a conversation. Incidence of depression is higher than normal with
40% suffering from “the blues”.
So if I can't communicate effectively
with people verbally how about if I write things down? - that's a good idea . .
. . well isn't it? Erm no! my handwriting is all but illegible. "But
couldn't you use a computer" - ah well yes but not at the counter of my
local corner shop. Any other written / typed word has to be very carefully
checked because my typing has so many errors included.
After minimal exertion I get so
fatigued with a back aching so much in a way that is not so much painful as it
is distressing that all I can think of is sitting down so that I can rid myself
of this discomfort, this distress that accompanies my fatigue.
With all these problems I'm sure I'm
quite hard work to talk to. Hard work to the extent that I wouldn't blame you
if you diverted your attention away from me.
One last problem that has an effect
on communication in only a minor way is my vision. Which tends to be a little
blurry and most of the time I am unable to automatically keep both eyes
converged upon any object that I am looking at. This means I have double vision
and I walk around seeing two of everything. This effects communication because
it is a distraction for me. It is something I have to work on rather than
allowing my brain to automatically see and interpret the world before me. So I
am not able to listen to you as well as you might hope.
In summary the list of symptoms that
interfere with normal communication are:
1. Expressionless face
2. Whispery quiet voice with little
cadence.
3. Loss of sense of smell
4. Drooling
5. Cognitive impediments
6. Illegible handwriting
7. Fatigue
8. Double and blurred vision. And one
more
9. Is day time sleepiness and
insomnia at night.
So when you are telling me a really
exciting story well I'm sorry but I may just want to drift off to sleep now.
Add to these the ever present distraction
of all activities made more difficult and a general feeling of malaise such
that much of our energy is focused on doing things as normally as possible
rather than giving you the attention you deserve.
With these symptoms and more, getting
more intense over time, the failure to communicate as normal leads eventually
to social isolation. Talking to people is just too much effort and in any case
we don’t want to burden other people with our communication difficulties, far
better to stay at home out of the way --- out of sight out of mind!.
PD World Awareness Day - 11th April
2015
Last edited by Pete-1 - A special Thank you to Pete!!!
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