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For Doug McCorkle's Mother

You wrote the following;

Question from Mom:
Mom's main problem is "freezing" during her off times.  During these times,
she finds that she can sometimes accomplish small tasks (walking across the
room, for example) with a great expenditure of time and effort OR she can
sit back and wait until her medicine kicks in and get a lot more done with
less effort.

The question is: Is it better to rest up and wait for the medicine (it's
certainly more comfortable) or is there some benefit in fighting the brady-
and akinesias ?

ANSWER:  I honestly believe that OFF time is harmful to the human system.  We
would always like to be ON since that is as close to normal as we can be.
 When we are normal, all systems are operating in an acceptable range.  When
we are OFF, one or more system is operating outside of an acceptable range.
 This puts stress on one or more systems.  I feel it as bradykinesia,
rigidity, dyskinesia, dystonia and many other symptoms.  Operating in this
unacceptable range must cause harm.  If one considers that those with PD
prior to today's medications had a shortened life span, need I say more.
 Today, the expected life span of those of us with PD is about normal. I can
only attribute that to medication that keeps us out of the OFF and ON with
dyskinesia states as much as possible.

Vision can play a major role is helping one out of OFF states.  Freezing is
the inability to initiate movement.  Often movement can be made backwards.
 Or often movement can be made up or down a stairway.  Yet, when confronted
with walking forward, the feet seem to be glued to the floor.  This freezing
seems to happen most often when passing through a door way, walking down a
narrow hallway, attempting to turn around in a confined area, and other
similar situations that pose a change of "environment" on us.  A relatively
simple model might be proposed that goes like this:

We are walking in a normal way when our eyes detect a environmental
requirement to change this normal walk.  The signal sent by the eyes to the
brain is really two signals  (1) tells the feet to stop in their current
place until they are told otherwise  and (2) tells the brain to come up with
an alternate walk pattern due to a perceived environmental requirement.  In
the normal brain system, these two signals are acted on instantaneously.  The
signal to stop to the feet arrives just before a new signal is received
altering the walk pattern.  The corrections come fast enough that no
noticeable stop ever happens.

The case for PD is slightly different.  The signal to stop is received and
acted on.  The signal for modification is either delayed or never is given.
 The net of a perceived change requirement is freezing.  In the worst case,
the feet freeze and the body continues causing one to fall.  Now that is
serious.

Somewhat similar to freezing is akinesia.  In akinesia, one is unable to
initiate movement.  This is the second half of freezing.  Once one has
stopped (freezing) the next thing is to initiate movement.  If this is
impossible, it is called akinesia.  As stated earlier, often the patient can
walk backwards, up and down stairways, but not forwards.  Looking a little
closer at balance, when walking backwards, the center of balance or
equilibrium does not change.  In other words, walking backwards is similar to
just standing.  The same thing is also true when going up and down stairways.
 Our center of balance stays almost at the same place as when standing.  Now
consider walking forward.  The first thing one notes is the body must lean
forward followed by a foot to catch the forward fall.  In a way what is
happening is the body is thrust forward and the center of equilibrium gets
pushed forward.  If nothing else happens we will fall on our face.  Thus a
foot follows the lean and if we hold the lean, another foot must follow, and
"like magic" the human is moving on two feet.  Note what had to happen.  (1)
The body had to be put at risk and (2) a foot had to be set forward to
prevent the fall.  A simple definition of akinesia might be a time when the
brain considers the risk of body harm too high.  The problems of akinesia and
freezing are most profound when in an OFF state.

One possible way around some of the OFF time problems is to create a "visual"
pathway in areas prone to freezing.  By this I mean, put marks on the floor
and step over them when walking.  For many, this reduces the severity of the
visual signal to stop.  In some people, the need to stop is gone and it seems
like "old times" again.  If you saw the movie, "Awakenings," Lucy needed the
floor patterned else she stopped at the edge of the pattern.

Now a little on the mechanics of this procedure.  Testing the patient
response.  Using an ordinary deck of playing cards, place a card at about 18"
intervals down a hallway, through a door way or where ever this problem of
freezing happens.  You might find that 18" is too big for very small people,
and too small for large people.  The intent is to have the patient step over
the marks, thus the cards should be placed at normal walking stride.   Now it
may be necessary to place more than one card to form a mark.  What ever works
is the answer.  Be sure the marks are placed at normal stride and not at slow
or reduced stride.

Now that the marks on down, the only thing left is to have the patient try
walking over the marks.  This is a new perceived visual pattern requiring a
little learned effort.  Generally walking over the marks only takes a few
tries before the patient automatically starts to use the marks as visual
cues.

What is expected?  (1)  You may have difficulty getting the patient to stop
walking over the marks.  The reason is the patient is feeling more than just
the ability to walk in areas that used to cause problems.  The walking
loosens the muscles and you should observe arm swing, knee bending, foot
lifting, facial expression etc.  All of these may become normal without
medicine.  Surprised?  (2)  It does not work for everyone with freezing and
akinesia.  But remember, it may take some getting use to.  The cues are new
and this may require learning a new skill.  It may be better to leave the
patient alone to explore at their pace what is happening.  Often the patient
will say, "I don't feel anything new, it must not be working!"  You, however,
can see the difference.  (3) It the marks are making a difference, the use of
masking tape (the kind that is colored and is of the long staying without
permanent damage used be used.  This may be purchased at most hardware stores
for about $5:00 a roll or less.

Now that the house has all these marks, how is the patient doing?  I hope
much better.  I know for one lady who would fall about 2 or 3 times a day,
she hasn't fallen in her home since  the marks were put down.  For another,
the marks are so enabling that and they wondered why it hadn't been stated
before.  What do you have to lose?  A half hour to try something maybe.  That
is cheap compared to a fall.  Let me know what happens.

Regards,
Alan Bonander, age 56, PD 12 years, infusion, pallidotomy.

PS: Much of the material above is from Tom Riess in conversations,
demonstrations and reading papers.