First, thanks for all the kind messages of support!
(This message is a little longer because it directly deals with PD.)
Thursday already! and we're off to hear a lecture by Professeur Bensing who
is speaking at a week long conference (Overcinge de Klencke) for
parkinsonians and their care-givers taking place in Oosterhesselen.
Apparently it is the first of its kind here and has been very successful,
although there are some changes suggested for following years. Everyone was
very welcoming and tried to make us feel at home. Kees tried to translate as
Prof. Bensing spoke about a study she has just completed that set out to
define the concerns and priorities of parkinsonian's . This particular
study was done on 60 people who attended 2 conferences in Utrecht, so the
results reflected the desires of a group who are quite active and try to get
out and socialize as much as possible (not necessarily the norm).
Understandably, the feelings of a large number of parkinsonians who don't,
or can't get out have not been represented, so the results tend to slant a
bit. Although the order of importance is different for many of us, the
issues are common.
Prof. Bensing's main interest is positive thinking. There is a fine line
between that and not being realistic she was quick to point out. It's
impossible for anyone to be 'up' all the time; we have to realize that
sometimes it's OK to feel down. Some of the other topics discussed were the
importance of socializing and remaining in contact with other people.
Something I hadn't thought about before is the fact that the very nature of
the disease (for lack of a better word) - the rigidity and staring may make
people think we don't want to communicate with them. Body language is so
important and Parkinson's can disguise what our bodies are trying to say
either by causing dyskinesia or bradykinesia.
Other topics included the fear of becoming increasingly dependant,of the
future, of loss of memory and concentration.......... . personally I haven't
had that happen yet. . . . Oops, there goes the phone, .............. I
guess I should feed the cat.....and fold some laundry......
...... Now, where was I? ... < sorry, had to throw that one in :-)>
.....Other topics included dealing with your doctor, how to cope with
disabilities, tiredness, pain, (even though many doctors will say that there
is no pain associated with PD), and the need to talk with someone who truly
understands. This can be a big problem, because we don't want to 'dump' on
one particular person all the time, but it is necessary to feel that
someone, somewhere does understand. That's why this group is so valuable!
The discussion took almost 2 hours so I've obviously missed alot, but one
thing is sure, and that is, that all over the world, in every language, we
share similar concerns.
One of the participants told a story which illustrates the general public's
misconceptions about PD. Apparently some members of his church had heard
that he had been diagnosed with Pd, and as was the custom in their parish
when a member was ill, the flowers left over from the Sunday morning service
were taken to his/her home to cheer them. I guess that when they arrived at
his door with the bouquets they expected a shakey, bent over, suddenly aged
man.......instead they were informed that he had just left on a 400 km
motorcycle trip.......We all got a good laugh out of that story!
BTW, registrations are still coming in......128 people are set to walk/run
on Sunday!
Lynda
42, 8
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Kees Paap Oudedijk 56
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3612 AC Tienhoven The Netherlands
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+31 3469 1021 FAX + 31 3469 1017
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Age 45, 6 years PD, Sinemet 25/100 CR 3/day, Permax 1 mg 3/day |
Sinemet 12,5/50 if necessary. Love working (120/week) |
Collecting information BBS +31 3469 1017.
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