Greg,
I have been diagnosed with PD for a short time, and I do not understand
what happens in the more advanced stages of PD, and I specifically do not
understand the on-off stuff or how extreme the differences are between the on
and the off stages.
A. You and other people talked to Ivan and you put postings on this list
that he was dying, that he was receiving bad treatment, that he was receiving
no treatment, that he needed an advocate, that he was going into the nursing
home.
B. You talked to Ivan and you put a posting on the list this afternoon
that he was now at home, no details about when he got home or how he got
there, what type of trip he had, and apparently today he participated in a PD
golf tornament and he received first place--it was not clear but my reading
and re-reading of the posting was that he was thanking a person for his
contribution/pledge to the tournament and that Ivan won the tournament.
I am confused. I do not know how to get Ivan from point A to point B.
Is this an example of on-off periods? Did he get some (miraculous) treatment
at the hospital? Did I get complete, accurate information as to points A and
B? I don't get it. Is there an explanation?
My impression from your posting was that Ivan was pleased and proud about
this golf tournament and his win. Assuming that Ivan had participated in and
he won first place in the tournament, what was he thinking? This could
theoretically affect his appeal, but it probably won't. But he will probably
have another hearing about the appropriate number of care hours for him. The
caretakers and the bureaucracy in Maine probably already know about this or
will soon; I suspect there is probably already a very nice article about this
in the local paper. Ivan will have a hearing examiner who thinks like I do,
but who probably has no working knowledge of or experience with PD and who
most definitely has no sophisticated knowledge of or experience with on-off
periods. Last time around Ivan and his attorney could not explain to the
hearing examiner Ivan driving the car and singing in the choir--how can they
explain now that after being in the hospital, and receiving no care hours
from the State of Maine, and after making the return trip to Maine, Ivan
almost immediately participated in and won a golf tournament? A golf
tournament? If it turns out I am misreading your posting and he was first
place in collecting contributions, it is somewhat different, but he still has
to explain the no care hours for that period of time and how he managed to
get all the contributions in a short period of time when he was in the
hospital in another state right up to the time of the tournament.
Actually I am hoping that I have misread your posting, Katie.
