Dear listmembers

This is an excptional amount of confusement and communication disturbance
about falling. It awakens the psychotherapist  in me.
First I have a  question, which, I suppose, can be answered without
increasing the disagreement.
There it is;"wat is festination ?" and the next question might be a bit
risky,  is it possible that a word,that isn't in any of the dictionary's
that are mine not even in that big one that contains all existing English
words and imho also many non-existing, is an existing English word.? I
doubt this seriously.
I'll start with the first mail of Tom Riess

QUOTE 1
In Parkinsonian terms I would define "falling" as festination which does
not catch up to a displaced center of gravity.  While ambulating anyone's
center of gravity is displaced forward. What prevents us from falling
ambulating anyone's center of gravity is despite this forward imbalance is
the continual advancement of our feet each step serving to catch us and
prevent the imbalance from accelerating making us fall.  If we allow the
imbalance to increase then we  have to advance our feet more rapidly and
this is running.  If we can't advance our feet a far enough distance then
the cadence of our steps increases as we attempt to catch up to the
imbalance.  When the strides get too short we can't decelerate fast enough
to catch up and neutralize this acceleratingf force of .displaced center of
gravity and then the result is a fall.
End Quote

In the past I had the same reaction on a part of the mails of Tom as Dennis
Green expressed in his reaction
that is quoted

(QUOTE 2) My experience of falling as a direct consequence of having PD
bears such little resemblance to the examples you provide as to make me
wonder if we are talking about the same thing.
End Quote

Reading earlier mails from Tom like this I didn't get the feeling  that the
German call an" AHA Erlebniss" an Aha experience which comes when suddenly
an amount of not coherent facts change in an amount of facts which have
clear relations to each other. I don't say now that the mails of Tom Riess
did not clarify something, but that they had not an increasing effect on my
understanding of my own problems with walking falling and freezing.  But
when now I was  reading the quoted 1 mail, I  did have a kind of an Aha
experience.Before my eyes a  movie about PD came back, which was showed
many years ago in the neurology  lectures.  The man we saw was old, had a
forward stooped posture and  walked and fell exactly the way that is
described by Tom.That man was The Typical PWP and lived somwhere in pre-
levadopa times  and he appeared in my mind again when I  was told  my
symptoms indicated that I suffered from  PD. But I could hardly believe the
disease I suffered from was the same as his. I did not have the tendency to
 stoop forward but to tighten my back and bending it backward and this was
not the only difference. So that might be the clue to understand my lack of
Aha. Tom wrote about that other patient and not about me, having quite
different symptoms. and, as I learned from the  quote 2, also not about
Dennis Greene. And to add more complexity the falls of Dennis seem to be
different from mine as I learned from quote 3

QUOTE3
"We drag our feet and trip over things that wouldn't normally trip a 2y old
toddler. Things like ball point pens etc." end of Quote

Dennis you could not write something that would clarify more for me that at
least  part of my falls are not the same as yours, I assume this is not
interpreted by you as criticism, because you did not claim to understand
all falling of  all PWP’s
The fact is I may also trip over things but that never makes me fall not
when "on" and not when "off." People around me have many times been
astonished about me recovering my equilibrium after a trip.so easily and
prevent a fall when that seems for  the ones who watch  just inevitable.
This is so amazing because I had phases in my disease in which falling was
a serious problem.
The next short quote:from Dennis:

QUOTE4
" our feet can't move fast enough to keep themselves under our heads" (
Dennis this is a beautifull one and will certainly stick in my memory. Do
you have  copyrights ?) seems to me a more than perfect  recapitulation of
that same PWP that figures in the mails of Tom.

Than comes a mail from Rita Weeks

QUOTE5
My movement is not like Tom's.....the non-educated would not recognize both of
us as having the same neurological diagnosis.........but I can say without
hesitation that I have no doubt that vision has an impact on movement for Tom
Reiss and other Parkinson's patients.
Dennis, try to have an open mind and discard your view of "if it doesn't
happen to me, then it doesn't happen".   We have enough to deal with without
having to justify our movement/lack of movement to other Parkinson's patients.
end of quote

Rita, I don't understand what it is that you're reproaching Dennis for. The
only thing  I see in your mail is that you are saying that you have to
justify  your synptoms to other PWP,s because Dennis thinks his falls are
different from Tom's. May be you intended to say something else and  wish
to clarify

The next quote is from Tom again and reading it after I had made the
foregoing  analysis,  confused me again

QUOTE6
Falling almost always occurs while "on" because while "off" gait initiation
problems prevent one from walking with any volitional displacement of
center of gravity.  The environment can, however induce displacement for
example steep inclines or if someone gives the subject a shove (push/pull
test).
End of quote

I fear that the confusion about "on" and "off" in this thread reminds me of
the same old dicussion as it does Dennis and that all I say about it can
only increase the confusion . My self-control is not strong enough to keep
silence, but I put myself on the brake (Dennis, I remember you once wrote a
beautifull sentence about short willpower  and long opinions, I don’t
remember it exactly any more). So I have only one question for Tom:" was
that man in the movie from the pre-levadopa  times,  according to the way
you use thoses concepts , "on" or "off"?

It would be a great loss if we could not write anymore the facts about our
symptoms to the list, because we fear, they are not supporting an
interpretation or a theory of other listmembers. I have learned during that
former discussion  how persons, who claim to know what are possible
reactions of  PWP’s  inhibit other people to write about what they observe
in themselves. Interpretation and  theorizing  are productive if they
stimulate people to look for facts that support it or that reject it. It is
counterproductive if it  makes his adherents blind for all facts that don’t
support it.  So I think  Tom Riess had better listen to Dennis and try
to understand why this theories didn’t appeal to him.
I see a parallel of the reaction in the behavior of some doctors which can
not say:"I don’t know" and  deny the possibility that something is wrong
but they don’t understand what it is. If they can’t assess any diagnosis,
they say :the symptoms are not real, it is only psychic etc. So people, who
have a theory about something might not be capable to go through the phase
of integrating new facts , which causes  always a period of uncertainty. So
they have to learn that a person who is capable of saying "I don’t know; I
see that the observations are sound , but I don’t understand them", might
prove not his ignorance, but his wisdom.

ida

--------------------------------------------------------------
Vriendelijke Groeten / Kind regards,

Ida Kamphuis                            mailto: [log in to unmask]