Hi Ivan, hi listfriends,

What do you mean with really off? Off in a way that you only can wink your
eyes? Hardly can speak? That you can move your arm only so slow that you
need 10 mins to get a pill? I have had such moments and I thought it was to
bad to experience that again. So I use my medication in time and I'm
thinking of a pallidal stimulation or a tissue implantation. I don't know
yet what is best for me. But I am prepared!

I have my pills on a table next to my bed, or I stay up all night. When I do
that I don't go off completely. I stay awake enough to fight for a  little
bit of movement. I take extra Sinemet and Permax during such a period.  If I
need to pee, I don't wait till the last moment, because it takes me a lot of
time to get to the restroom and to get my pants down (I always sit down)
Often I don't bother putting on my pants again. It is easier for the next
time:) I can imagine that an urinal may be a handy thing for having on
several places in the house.  I don't care about how I look like when I'm
off or and I think that's even worse : really over reactive on the
medication. When I have a period that I'm much off, I  want to be on, but
when I have a period that I'm too much on, I want to be off. I wish I could
choose, but this choice is made for us.

One thing I never loose: my happiness, my patience, my will to make
something of nothing, my optimism, my joy in life, my love for Jesus and for
other people especially for Faye:). What I apparently have lost is my
ability to count, but who cares? The only that counts are the numbers of
days ticking away, getting closer to the cure. I wait patiently and
patiently.

Kees Paap

         Off & On

When I'm "off", I'm slow,
my arms are so heavy,
that I don't know,
how to fool the gravity.

My legs are somewhere there below,
I feel them, but can't control them,
shuffling and sliding is the way to go,
where I normally could run.

Then there is that change,
my meds start kicking in,
oh that feels so strange,
when my limbs are twinklin'.

I know that within half an hour
I will be active and alert.
But it is very sour,
to wait, while it still hurts.

There it is ! I feel it in my muscles,
the energy is there, world here I come,
this feels so good that I can do it all,
and I forget the hours I numbed.

After a while it fades away,
I return to my small world,
where I want to stay,
small and curled.

Somedays I'm hardly "On"
and others I'm over-re-active
The last normal day has gone,
some years ago, so negative!

 But here I am, my eyes have lights,
I enjoy my life and my growing spirit,
and know where to find the sites,
to gather all the info with it.

My life has changed in positive way,
I gained a lot because of my disease,
spriritually I feel I want to stay,
In my cloud of heavenly peace.

That's my dream for many "offs & on's"
A cure for Parkinsons Disease,
To give us back our normal ones,
The search we want to seize.

Kees Paap
August 1, 1998