This post is primarily aimed at those of us who do not have PD.
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 sent.....
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
5. Cognitive impediments
6. Illegible handwriting
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