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My sincere thanks to all who have responded with wisdom and compassion to my
friend Ron's situation. I would like to give a good report, unfortunately
things haven't gone well. It has become painfully apparent that Ron is not
able to remain independent. We have gone from one crisis to another, with a
few minor victories punctuating.

Ron's problem with self-medicating is the one area we have seen some
solutions to. I have concluded that all those nifty little
compartmentalized, multi-colored pill containers that you buy at the
pharmacy have been designed by a team of nimble-fingered engineers whose
definintion of handicapped is someone who is no longer able to compete in
Olympic events. Who on earth do they think is using those things? We finally
settled into a system of multi-colored envelopes that I prepare each day,
clearly marked with the time and meal that they are associated with, and
left folded but UNSEALED stacked in the right order on a plate. This is
working pretty good.

Everything else has gone to hell in a hand basket, from the night before
last when I arrived to find him frozen at the kitchen table with frozen
pasta glued to everything in sight, and a pot of pasta water furiously
boiling on the stove with about a quarter inch of water remaining, to last
night when he froze and paniced, thankfully within reach of the phone, and
the local paramedics had to come help him out.

I guess the good news is that his brother in Texas has realized the gravity
of the situation and is flying in on Monday to take charge of Ron's affairs,
and take him back to Texas to live in an assisted situation.

The very eerie and really heartbreaking part of this is talking to Ron about
it all. He has been in the same room numerous times as I have discussed his
situation with Home Health nurses, social workers, emergency room staff, his
neighbor, his brother, etc, etc...almost, but not quite, as if he was not
there. Ron understands what is happening, and is so afraid for his safety
and quality of life that he is willing to go this route. But he still has
feelings about being 54 years old, and being unable to care for himself, the
victim of a merciless disease. He says "When they asked us what we planned
on being when we grew up, I never said I planned on being a victim of
Parkinson's." I am the only person in his life that talks to him about his
feelings , most others see his inability and disability, and act as if
that's the whole of Ron.  It feels very weird to sit across the table from
someone you care about  and tell them that their life as they know it is
over, from this day forward their destiny will be controlled by others,
their freedom is but a memory. I got a good taste of how you caregivers must
feel, and it's no fun.

Add to that pot just the hint of "will this happen to me too?" and I'm not
my usual smiley self right now. I have to say though, that in the face of
this hideous thing we call PD, I have seen and experienced dimensions of
love and caring, sacrifice and selflessness that I have seldom observed in
the rest of this world who are supposedly not so cursed as we are. I doubt
Ron's relationship with his brother would have ever been close, but by the
grace of God, he has responded to Ron's need. Like I told Ron today, when
life is reduced to the lowest common denominator, all the fluff gone, we get
to be who we really are.

I told you there was a silver lining in that dark, dark cloud!

Kathie Tollifson
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