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Parkinson's Disease
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Posted 5/20/2007 7:42 PM (GMT 0)
I wanted to go back to my church, 'The Religious Society of Friends' (Quakers) today as I had not been for a very very long time. It is a small meeting house with about 40 members present today.
When I got ill first I used to arrive half an hour before it ended but I did not want to make 'a grand entrance' so I went for the beginning.
But I could only stay for 20min of the hour's meeting. We sit in a quadrangle and my jigging and jerking was just dreadful. they never saw me like that and I was awful upset and of course I seem to have an anxiety to about it which tenses me up even more and the chorea was bad too and my arms were flayling. to cut a long story short, I left, in tears and went into the kitchen and met a member doing the tea and I sobbed but just told her the movement difficulties was distressing me.
I would be most grateful if you could tell me how you dealt with all this on a psychological level and how you tried to come to terms with it.
You know, I'm StILL not supposed to have parkinsons. And that is dispite testing pos on the DAT scan!
I keep feeling its one thing having PD for defo and onother not understanding why my body is misbehaving and not being able to inform people why all this is happening AND inform myself.
I just want a defo diagnosis.
xx as always,
Ann
Posted 5/20/2007 8:27 PM (GMT 0)
Ann, can you go to the Elder or his wife, and ask if you could move your chair back so you would not disturb those meditating. Tell him you are uncomfortable with the thought of distracting others, and need to be in God's house as you receive such comfort there. To move yourself would take you out of direct sight of others.

What response did you receive from the lady making tea?

When my husb. and I are in a public place, I make sure he has just had his meds, and we always sit in the back. I also put two small pillows in his lap to absorb the tremors and put his most active side next to me. It is a difficult situation whether you are at a small or large gathering.
Posted 5/20/2007 9:08 PM (GMT 0)
The woman making tea is lovely. I actually dont know what to do to solve the problem. I thought that going in the beginning would help but now I think the grand entrance might have been better.
I also sit near the door cos that is where I am most comfortable and further back are benches which I couldnt cope with., as it is, I have a chair with arms which i NEED.
with only that amount of people in a very large roomm, EVERYOBNE gets noticed! I was so CONCIOUS of the jigging etc that I was almost sweating to try and stay still and that made the jigging worse and my muscles contracted and I think it just went from bad to worse.
Maybe next time will be better. I think I might position a chair at the back! I am very deaf anyway so I never hear ministry so I suppose it doesnt make a difference where I sit.
Thanks for responding. I havent put in a good day. Nope the Lord didnt get a look in either, so busy was I with jerking etc!!!
xann
Posted 5/20/2007 10:16 PM (GMT 0)
You may be past the point where this helps, but I am still able to hide the tremor by slow movements.  The only time that I went to church I sat there holding a Bible and I slowly squeeze it and slowly relax, slowly squeeze and slowly relax.  As long as I am stimulating the nerve there is no tremor.  I also noticed that my wife can hold my hand, rub the finger next to the thumb and there is no tremor.  In situations where I have allowed the tremor to be noticed I just tell others that I have parkinsons so they will know why I moving.  I'm pretty informal about that stuff and have been known to ask strangers how long they've had parkinsons.  When they realize that I'm a parkie too we have become old friends. 
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