Reading a closed Book

[Ronald]

Most of us at sometime have picked a closed book which has taken our interest. We look at the cover which may show a picture or scene. Even the title tells us something .All in all we get a good idea of what it is about.

But what about Parkinsonians, take them as a book and you have a different story or rather no story at all. Communication is a two way processs. It consists of give and take information and feed back. It is strange, therefore, to be faced with a person with whom we are trying to communicate, who responds with a blank look, very little body language and slow replies or none at all. Others feel that Parkinsonians are rather dull and not very interesting. Some feel there is no point in continuing the conversation and may well simply walk away.

It is very important that persons trying to communicate with a parkinsonian keeps in mind that the problems are not always constant. Parkinson disease is slow and progressive but it is also fluctuation and not the same for every body. On any given day the physical capabilities of a Parkinsonian can change dramatically depending on their drug levels. So more effort and persistence are needed at some time or the other.

What can we do to make things better for Parkinsonians when their communication skills are down?. We must take time to wait for them to get over to us, their needs and wants.

Hard as it is, we must try not to mirror their expressions. We must try to be aware of what is happening keeping in mind that their mask and their lack of body language is not in response to us. So it is an ongoing problem one which will not go away. Hopefully the more we understand about the makeup of a Parkinsonian the better we will communicate with them, removing the unnecessary isolation and rejection so many of them experience in their every day lives.

[BunnyTheOctopus]

A book sealed with seven seals

Some people, a minority fortunately, can't tell the difference between a condition and the person with the condition.

When in a wheel chair people who stop to chat talk to the person pushing you. I think they regard you as a mental retard, because you are disabled.

If they ask you how you are they are only interested in telling you about their ailments.

A person with MND told me if asked by a passerby what was wrong with her, she would reply that she'd been shot in an armed robbery. If she told them she had MND they would tell her that they had their own problems.

When told I look better than you did the last time we met. I weigh up five possible replies:

"Thank you that's nice to hear"

"You said that last time"

"Am I fatter?"

"I may look OK but inside I feel awful"

"The candle always burns more brightly just before it goes out"

An acquaintance walked up to me and asked me if I was alright, but when I said "NO" it didn't register and she carried on walking.

My carer seems to excel in misjudging when I need help. If I need assistance she isn't looking in my direction. When I don't need help but want to do a task by myself she offers help.

Yet I can laugh at all these events, because laughter and humour, no matter if it is dark, can get you through the day.

[Joealt]

Word.

[Ronald in reply to Joealt]

When engaging in a conversation with people affected with PD,often an opinion is formed that people with Pd are not interested in or even listening to what the other person is saying.This is often intrepreted as rudeness,lack od cooperation or even stupidity on the part of the indiviual with pd

It is good to know that you have a sense of humour.Laugh at yourself.A laugh a day is more important than an apple in keeping the doctor away.learn to say No without feeling guilty.Find easier ways to do things determine your priorities.Eliminate the unnecessary

Life is certanly more diffuclt for me today but whatever the circumstances I still feel a smile and a positive attitude makes it easier to face the future