Rick - Many of us have that same goal.  The bottom line is, I'd love to
find a cure for my love  and others before it's too late.  Thanks for the
note.  Jo Ann

On Sun, 20 Mar 2005 11:12:40 -0500 Rick McGirr <[log in to unmask]>
writes:
> Jo Ann, I would love to write my treatise here.  I would love to give
> the world an earfull of what I think, my core beliefs, and my own
> personal babble.  But that would not prove I am correct.  I have
> learned that tolerance is a very important key to living in this
> fast,
> crowded world.  The greatest teams are formed from diverse
> candidates,
> and in that way the potential of those who post here is very
> dynamic.
> We have a common goal, a common desire, a need to be well.  Someone
> said we could potentially (there's that word again) see major
> progress
> in the near term, so we're very hungry for it.  I feel a great
> restlessness here.  No, I mean right here, in the pit of my stomach.
> But I'm sure you do too.
>
> Anyway, I'm happy to be here, happy to read everyone's posts, and
> I'm
> ready to team up with this group, even tho there must be a complete
> range of political and religious 'slants' among members.  I'm wordy
> sometimes, but after all, I'm a bottom line kind of guy.  And bottom
> line is, where's my cure?  Everything else is less important.
>
> Thanks for being here, everyone.
> Rick
>
> ----- Original Message -----
> From: "Jo Ann Coen" <[log in to unmask]>
> To: <[log in to unmask]>
> Sent: Saturday, March 19, 2005 12:39 PM
> Subject: Re: Ariela/ posting vs. private message
>
>
> > Rick - What a wonderful piece of writing.  No wonder you are
> wanted
> by
> > the NPR station.  However, I don't think you should worry about
> what
> > "other" people think.  It is what YOU think that matters in your
> > progress. Of course, I speak with tongue in cheek, because I don't
> have
> > PD.  However, I had a quad by-pass in August 2003 and a mastectomy
> in
> > August 2004 (something about August, I'm already dreading for
> 2005).
> I
> > also was hospitalized for 5 days with a staph infection.  Each
> time,
> I
> > held my head up high and did my thing.  I play the piano for my
> church,
> > and in 12-1/2 years, I only missed a Sunday when I was
> hospitalized.
> > Three weeks after my quad by-pass, I drove myself to Church and
> played,
> > and same with my mastectomy.  So even though I've not experienced
> PD, I
> > still feel I can say, Attitude is very, very important. Best to
> you -
> > again.  Jo Ann
> >
> > On Fri, 18 Mar 2005 09:48:25 -0500 Rick McGirr
> <[log in to unmask]>
> > writes:
> > > I don't mind your posting to the listserv.  It's actually good
> > > therapy
> > > to share my concerns with you and everyone, as well as your
> > > reactions
> > > to my statements and answers to my questions, and vice versa.
> > > (Shades
> > > of "Fight Club"?)
> > >
> > > Funny then that I have this hesitation to go public on the local
> > > level.  I was writing a piece as a 'listener commentary' for the
> > > local
> > > NPR station, and I...never finished it.  Most people don't know
> yet
> > > that I have PD, and for now, while I'm still 'functioning within
> > > nominal parameters', I'd just as soon not announce it on the
> radio.
> > > I
> > > have piano students, I book gigs for the band, I freelance as a
> > > musician.  It would just complicate things, with people always
> > > asking,
> > > "How ya doin, Rick?" with that extra-earnest tone, and wondering
> if
> > > I
> > > can still play.  (Yes)  There are those who know about it, and
> I'd
> > > rather they not ask.
> > >
> > > I know I know, my little buddy will end up eating me alive, I
> don't
> > > need to be reminded.  I've come quite some way in accepting
> my...
> > > condition.  (almost said 'fate'.  Don't believe in it, never
> give
> in
> > > to it.  Wouldn't be prudent at this juncture.)  I've also gained
> a
> > > lot
> > > of toughness, partly through the energy and support I get from
> being
> > > a
> > > member here.  Everyone shares that common bond that goes beyond
> the
> > > mundane-ness of religion and politics.  What a boost it is to
> > > realize
> > > that.  And I get a real boost from those on the list that have
> been
> > > battling for a lot longer than I.  These people are the
> definition
> > > of
> > > the word 'tough'.
> > >
> > > Fear?  Fear is having your town torn up from the sky.  Fear is
> being
> > > the only survivor of an attack by machete-wielding militia.
> Fear
> is
> > > being an AIDS orphan.  Fear is having to let go of one child to
> save
> > > another from a tsunami.  Fear is sitting in a mud puddle waiting
> to
> > > die of starvation.
> > >
> > > PD?  Piece of cake.
> > >
> > > Well, I usually wake up and write something.  Thanks for being
> > > there,
> > > Ariela and all.  Good morning, world.
> > >
> > > Rick
> > >
> > > ----- Original Message -----
> > > From: "ariela" <[log in to unmask]>
> > > To: <[log in to unmask]>
> > > Sent: Friday, March 18, 2005 2:00 AM
> > > Subject: Re: (my progress report) / AMANTADINE... ? /
> calibration
> > >
> > >
> > > > i admire your resilience, rick.    you seem to go about
> fighting
> > > this disease with great courage, and heads-on!    alas, my PWP
> > > (bless
> > > his heart) would rather think as little as possible about his
> > > condition.   his philosophy is, 'i got plenty of time to
> contemplate
> > > this lousy disease when i'm off, why waste additional energy
> when
> > > i'm
> > > on.'    incidentally, when he is on, even if dyskinetic, he
> > > functions
> > > better than many perfectly healthy adults i know...  :)
> > > >
> > > > now re. DBS -- for a moment there i felt like sitting across a
> > > movement disorder specialist, just wanting to wring their neck
> for
> > > stubbornly asking this question yet again....  :(
> > > >
> > > > truly, this must be my all time pet peeve -- for chrissake,
> why
> > > even
> > > float this option before exhausting any and EVERY possible drug
> > > combination first???     has anyone else had that experience?
> what
> > > else is there for treating PD if not drugs?    i know that DBS,
> > > unlike
> > > pallidotomy, is supposedly reversible (considering there's no
> > > ablation), but isn't this argument rather disingenuous, to say
> the
> > > least?   can you really believe that implanting electrodes
> directly
> > > into the thalamus, only to revisit after a while and remove
> them,
> > > would leave that tender organ called brain completely
> unaffected?
> > > if
> > > nothing else, just think 'scar tissue'!    not for nothing this
> > > delicate mass was encased in a skull (unlike other fine and
> > > sensitive
> > > organs we have)!
> > > >
> > > > but to go back to drug therapy -- my experience has been that
> > > doctors have their preferences for a particular regimen, and
> that's
> > > that!   you'd think they'd be blamed for running unauthorized
> > > experimentation, the way they stick to their original drug
> choice
> > > and
> > > prescription!
> > > >
> > > > oh, well.    incidentally, for the record, hear! hear! re.
> > > splurging
> > > on massage, exercise and the like.   i can attest first hand
> (ok,
> > > first witness) how important that is.   the trick though is to
> NOT
> > > concentrate so much on aerobic or anaerobic exercises (bulking
> up
> > > and/or cardiovascular workouts) but rather, concentrate on
> > > STRETCHING.
> > > it should not be done with the goal of expending
> energy/calories,
> > > but
> > > rather coaxing the joints and muscles -- EXTERNALLY -- into
> > > remembering (i.e., keeping) their limber state.
> > > >
> > > > when he is in israel (where he spends most of the year), my
> friend
> > > does HYDROTHERAPY, a treatment modality that has not quite made
> it
> > > to
> > > the states yet (i wonder why; perhaps because it's so obvious
> and
> > > simple... ?)     it's an amazing therapy that can best be
> described
> > > as
> > > a therapeutic massage in a small pool.   he gets out of such
> > > sessions
> > > not only loose and flexible, but if he starts while in 'off,'
> it's
> > > as
> > > good as getting an apokyn shot.
> > > >
> > > > anyways, there's a lot to be said -- and compared -- on this
> > > disease, and i'm much obliged for having this informative
> > > listserv...
> > > :)
> > > >
> > > > thanks for writing me, rick, and please do report on what you
> find
> > > about amantadine once you speak to your doc.
> > > >
> > > > best,
> > > > ariela
> > > >
> > > > ====
> > > >
> > > > > Hi, Ariela,
> > > > >
> > > > > I will look at amantadine, so I know what to say in reply.
> I
> > > don't
> > > > > know much about it, only having glossed over the info to
> date.
> > > > >
> > > > > I am not far enough along to have experienced diskenesias
> > > myself.
> > > But
> > > > > in the time since I discovered my little buddy (fall 2000)
> I've
> > > gotten
> > > > > a lot tougher.  I must say, if I knew then what I know now,
> I
> > > might
> > > > > have not been so quick to use Sinemet.  In the early going I
> was
> > > > > rather wimpy.  "I will gladly pay you Tuesday, for a
> hamburger
> > > today."
> > > > > Just get these jitters out of my arm!
> > > > >
> > > > > I must say that Sinemet has been bedy bedy good to me. ;-)
> I
> > > haven't
> > > > > yet had any of the bad side effects.  I just thought that
> now,
> > > while I
> > > > > have the strength and can better cope with the PD itself,
> might
> > > be
> > > a
> > > > > good time to really work on prolonging my usefulness as much
> as
> > > poss.,
> > > > > and to put off the bad side of Sinemet as long as poss.
> > > > >
> > > > > My neurologist told me that I now am at the top end of the
> usual
> > > > > dosage of Requip, but to aid my efforts to cut back on
> Sinemet,
> > > he
> > > has
> > > > > prescribed 10mg 3 times a day (up from 8 x 3).  Haven't
> started
> > > on
> > > 30
> > > > > per day yet.  I'll keep you posted.
> > > > >
> > > > > I really hope your PWP can get some relief, and some
> regularity
> > > out of
> > > > > drug therapy.  Remember there are the surgical options as
> well.
> > > Have
> > > > > you discussed DBS with your doctor?
> > > > >
> > > > > I also take selegeline, for the record, and an
> energy-boosting
> > > > > supplement, CoQ10.  And I'm always stretching and doing
> > > relaxation
> > > > > breathing, and every once in a while, I'll splurge on
> > > therapeutic
> > > > > massage.  $60 is a bargain for that kind of deep, if
> temporary
> > > relief.
> > > > > Every little bit...
> > > > >
> > > > > Good luck, Ariela.
> > > > >
> > > > > Rick
> > > > >
> > > > > ----- Original Message -----
> > > > > From: "ariela" <[log in to unmask]>
> > > > > To: <[log in to unmask]>
> > > > > Cc: <[log in to unmask]>
> > > > > Sent: Tuesday, March 15, 2005 3:01 AM
> > > > > Subject: Re: (my progress report) / AMANTADINE... ? /
> > > calibration
> > > > >
> > > > > rick,
> > > > >
> > > > > a new movement disorder neurologist we've now been seeing at
> > > mount
> > > > > sinai in new york has told us that amantadine is the drug of
> > > choice
> > > > > for dealing with dyskinesia.     it's the first i hear this
> take
> > > about
> > > > > this little-used drug....     but we're still keeping this
> > > option
> > > open
> > > > > as my PWP is now trying stalevo (after 4 years on sinemet +
> > > requip).
> > > > > he's having an awful time just getting calibrated -- he
> moves
> > > > > instantaneously between long and painful freezes to awful
> states
> > > of
> > > > > badly spastic dyskinesia.   there's just never a simple
> 'quiet,'
> > > > > 'calibrated' time.      it goes without saying that the
> dosages
> > > and
> > > > > frequency have been tweaked and re-tweaked, to not much
> avail...
> > > :(
> > > > >
> > > > > does it sound familiar to you, or anyone on the list?   can
> > > anyone
> > > > > please share what you do/have done/know about it?    (
> > > > >
> > > > > many thanks,
> > > > > ariela
> > > > >
> > > > > ====
> > > > >
> > > > > > But I just figure it might be worth a little extra pain in
> > > order
> > > to
> > > > > put off those nasty
> > > > > > diskenesias....
> > > > > >
> > > > > > Enjoy!
> > > > > > Rick McGirr
> > > > >
> > > > >
> > > >
> > > >
> >
> >
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