--Dear Beverly and David
thank you for your most informative and helpfuk corresopondence. I find it
difficult ti type a ling



--- Original Message -----
From: "Beverly Bashe" <[log in to unmask]>
To: <[log in to unmask]>
Sent: 26 January 2006 03:54
Subject: Re: DBS


> Hi, David.
>
> My husband had almost no balance...as in, almost zero.  He fell
> constantly,
> froze on any attempt at walking, and couldn't remain seated in a chair
> even
> if it had arms.  He'd fall out of the chair and wind up trying to pick
> himself up off the floor.  After one falling episode wherein he needed 17
> stitches in his chin, I dragged him back to the neurologist.  That's where
> I
> saw brochures about DBS. The neurologist believed that David would be a
> likely candidate for the surgery, so we were recommended to a wonderful,
> brilliant neurosurgeon at NY Presbyterian Hospital in New York City, Dr.
> Michael Kaplitt.
>
> The  questions you ask have no simple answers.  The short answer is that
> after surgery, David's balance was significantly improved and all
> dyskenisias stopped.  He had never had tremor, so I have no personal info
> on
> this.
>
> However, there are some caveats.
>
> First, prior to surgery, David was sent to a psychiatrist for an eval.
> The
> psychiatrist said that David was suffering some significant memory losses,
> problems with reasoning, etc., and he felt that the PD, after 35 years,
> was
> escalating in a downward progression.  Prior to a couple of years before,
> he'd been fairly intelligent, having few mental lapses.  However, I'd seen
> signs of this progression, and had become somewhat worried before the eval
> took place.  The psychiatrist warned Dr. Kaplitt that people with this
> type
> of profile generally didn't do very well after surgery.
>
> Michael (He's a wonderful person, warm, loving, compassionate, a fine
> surgeon who is dedicated to his patients, their families, his surgery, and
> research.  We've been on a first name basis since day #1.) and I spoke at
> length a couple of weeks before the DBS surgery.  He was concerned about
> David's psych profile, didn't want to hurt him, but conceded that we
> didn't
> have anyplace else to go.  David would very soon have to be strapped into
> a
> chair (probably across the shoulders and waist) for the rest of his life
> without the surgery.  We could expect the surgery to restore some
> semblance
> of balance.  How would he be damaged by the surgery?  It was difficult to
> say, because everyone's reaction is different.  Having no benchmarker, I
> made the decision to go ahead with the surgery...and David wanted it also.
>
> Second, David had been losing weight very slowly for 2 or 3 years, because
> he really didn't eat very much anymore except for candy and ice cream.  He
> apparently was also slightly dehydrated, which none of us---including his
> drs---realized.  This, I now know, is a very dangerous situation.  If you
> choose to go for DBS, please be sure to hydrate yourself well for a couple
> of weeks before the operation.  I cannot caution you strongly enough!
>
> The surgery took 13 hours, David did really well, had both sides done at
> the
> same time, was in no discomfort at all (Remember, the brain feels no
> pain!),
> and came through with flying colors.  Michael came racing out of the
> operating room, grabbed me and gave me huge hugs in front of all the
> people
> in the waiting room.  It was very sweet.
>
> However: David didn't "come back" to himself after the surgery.  We
> expected
> him to go home w/n a couple of days, but he was failing to thrive.  What
> was
> wrong?  None of us had a clue.  He got worse and worse, but it finally
> came
> out as a urinary tract infection...this being the major reason why he
> wasn't
> doing well.  Apparently, the dehydration had contributed to his
> susceptibility to infection.  Once it was treated, he began to revive and
> function again.  I've since known at least 20 people who've had DBS
> without
> any complications such as David had...and, in fact, have had their quality
> of life restored immeasurably.  Most, as a matter of fact, have been able
> to
> reduce their meds to almost nothing!  But David wasn't one of these
> people.
> The only med he reduced was 1/2 of a Permax 1x/day.
>
> Some form of damage had been done.  He no longer can problem solve, use
> tools (of any kind, even the simplest...which is why I'm doing the writing
> because he can't possibly use the computer), is incapable of  reasonable
> judgement, is compulsive, impulsive, oppositional, and defiant.  Is it all
> due to the surgery?  Had the DBS exacerbated the downward progression of
> the
> PD?  David, I now realize, was heading into a mild dementia before the
> DBS.
> He took months to come back, had months of PT, OT, and SP therapies at
> home
> after returning from rehab, and, in fact, is now rapidly sliding downhill
> intellectually.  It seems that, for all the 35 years he'd exhibited
> symptoms
> of PD, the disease progression was extremely slow: he'd show a little
> downward progress, then plateau for years.  Now, he shows a lot of the
> progression and plateaus for only short periods, then goes into another
> downhill slide.
>
> Again, was this due to the surgery?  Would this have been the same without
> the DBS?  Should we not have had the surgery?  If I knew then what would
> happen, what would I have done?  Honestly, I'm not sure.  He still can
> walk,
> but his balance isn't wonderful at this time.  But don't forget, he's been
> ill for at least 38 years...and probably about 5 years before that.
>
> In making a decision about your own surgery, I would say that
> intellectually
> you're an excellent candidate.  Your reasoning processes appear
> normal...in
> fact, you seem highly intelligent.  You appear to be nowhere near the
> situation David was in.  If your major symptoms are problems with balance,
> and/or dyskenisias, I'd say go for it!  Just be sure that you're
> well-built-up with vitamins, exercise, and fluids.  After all, hospitals
> are
> hotbeds of germs.  David, unbeknownst to me, was too susceptible to
> anything
> nasty floating around...which is why he became so ill.  But don't forget
> that DBS surgery isn't intended as, nor is touted as a cure for PD, nor
> should it be assumed that the "normal" progression won't continue.  It
> just
> helps you to balance and gives you a much greater quality of life.
>
> BTW, where do you live?  If you can get to NY, I'd suggest that you go to
> either Dr. Fahn or Dr. Kaplitt in New York Presb.
>
> Hope I haven't scared you off, but you deserve to know all sides of this
> issue, at least as much as I'm capable of telling you.
>
> Bev
> ----- Original Message -----
> From: "DAVID LEWIN" <[log in to unmask]>
> To: <[log in to unmask]>
> Sent: Tuesday, January 24, 2006 10:14 AM
> Subject: Re: DBS
>
>
> > Hello Bev,
> > Thank you for your detailed answer.  Two further questions.  Did the DBS
> > significantly improve your husbands  level of functioning?  What  was
> > his
> > reaction to the surgery.  Thank you, David
> >
> >
> >>From: Beverly Bashe <[log in to unmask]>
> >>Reply-To: Parkinson's Information Exchange Network
> >><[log in to unmask]>
> >>To: [log in to unmask]
> >>Subject: Re: permax
> >>Date: Sun, 22 Jan 2006 11:46:39 -0500
> >>
> >>Hi, David.
> >>
> >>Thanks for your comments.
> >>
> >>Unfortunately, I've been taking the dr.'s word on everything, my only
> >>concern being how it outwardly affected my husband: i.e., whether his PD
> >>symptoms were alleviated or exacerbated.  Obviously, I should have been
> >>looking further.
> >>
> >>The problem is that David has done really well on Permax.  After the
> >>DBS,
> >>he
> >>reduced his dose by one pill/day.  Now, he takes 1/2 of a .75mg
> >>Pergolide
> >>4x/day rather than 5x/day.  His thinking, posture, emotions are all
> >>"off"
> >>when he doesn't take his regular dose.  The Pergolide appears to have
> >>been
> >>even more important in his daily functioning than the Stalevo he takes
> >>5-6x/day.
> >>
> >>Obviously, I'm very concerned about the other effects of Pergolide and
> >>will
> >>be discussing this with our new neuro on Feb. 2.
> >>
> >>Thanks, again.  Without this list, we would have gone on blithely
> >>unaware
> >>of
> >>the seriousness of the situation.
> >>
> >>Sincerely,
> >>
> >>Bev Bashe
> >>----- Original Message -----
> >>From: "DAVID LEWIN" <[log in to unmask]>
> >>To: <[log in to unmask]>
> >>Sent: Saturday, January 21, 2006 11:30 AM
> >>Subject: Re: permax
> >>
> >>
> >>>Bev:
> >>>Take everything you hear from the doctor as a reference point to do
> >>>further
> >>>research.  I read about the side effects from Permax years ago and
> >>>decided
> >>>against it even though my neuro was loading me up with free samples
> >>>while
> >>>dismissing my concerns.  The doctors don't know with any degree of
> >>>certainty.  You have to do your own research and make your own
> >>>determinations.  This web-site offers a tremendous amount of insight
> >>>into
> >>>PD
> >>>and medications because we take the drugs and experience the
> >>>consequences.
> >>>Good luck, David
> >>>
> >>>
> >>>>From: Ted Menser <[log in to unmask]>
> >>>>Reply-To: Ted Menser <[log in to unmask]>
> >>>>To: [log in to unmask]
> >>>>Subject: Re: mirapex and requip / Another Point of View
> >>>>Date: Sat, 21 Jan 2006 00:38:32 -0800
> >>>>
> >>>>Our neuro says the same about Permax.  If I were you, I would find
> >>>>another
> >>>>doctor.
> >>>>
> >>>>Carole
> >>>>
> >>>>
> >>>>----- Original Message -----
> >>>>From: "Beverly Bashe" <[log in to unmask]>
> >>>>To: <[log in to unmask]>
> >>>>Sent: Friday, January 20, 2006 7:35 AM
> >>>>Subject: Re: mirapex and requip / Another Point of View
> >>>>
> >>>>
> >>>>>I have taken Permax/Pergolide for almost 6yrs;
> >>>>>>side-effects - vascular
> >>>>>>damage.
> >>>>>
> >>>>>Hi.  I'm very concerned about your statement, because my husband,
> >>>>>David,
> >>>>>has
> >>>>>taken Permax/Pergolide for at least that amount of time.  His
> >>>>>fingernails
> >>>>>are often blue, his hands very cold, but no one so far has determined
> >>>>>why
> >>>>>this is happening...nor is anyone duly concerned.   Also, his
> >>>>>breathing
> >>>>>is
> >>>>>often labored, especially after the least amount of exercise such as
> >>>>>walking
> >>>>>from one room to another.
> >>>>>
> >>>>>Yesterday, I was at a talk given by the South Florida neurologist,
> >>>>>Dr.
> >>>>>Thomas Hammond.  His statement, "We don't really prescribe Permax
> >>>>>anymore
> >>>>>due to heart valve problems," was scary...especially because David's
> >>>>>neurologist in NY has been routinely prescribing it for David...and
> >>>>>actually
> >>>>>renewed the scrip as early as a couple of weeks ago.
> >>>>>
> >>>>>We're seeing an associate of Dr. Carlos Singer's in a couple of weeks
> >>>>>in
> >>>>>order to get David's DBS checked.  I'm going to ask him about the
> >>>>>med...but
> >>>>>if this is seriously hazardous, perhaps something ought to be done
> >>>>>sooner?????  We can't get to see Dr. Singer for months, yet....
> >>>>>Should
> >>>>>we
> >>>>>consider finding another dr?
> >>>>>
> >>>>>Does anyone know Dr. Hammond?  He seemed very, very knowledgeable and
> >>>>>compationate.  David's neurologist in NY had recommended Dr. Singer,
> >>>>>whom
> >>>>>I've heard is widely respected, but....
> >>>>>
> >>>>>Bev Bashe  cg to David 69/59/31??
> >>>>>----- Original Message -----
> >>>>>From: "Carole Hercun" <[log in to unmask]>
> >>>>>To: <[log in to unmask]>
> >>>>>Sent: Thursday, January 19, 2006 6:15 PM
> >>>>>Subject: Re: mirapex and requip / Another Point of View
> >>>>>
> >>>>>
> >>>>>>Well said, Marco. Although, sometimes, I just don't have
> >>>>>>the energy...Carole
> >>>>>>
> >>>>>>--- marco de michiel <[log in to unmask]> wrote:
> >>>>>>
> >>>>>>>Carole,
> >>>>>>>
> >>>>>>>With respect, I have to disagree with you.
> >>>>>>>
> >>>>>>>Yes, we (PWP's) have to take some form of medication to
> >>>>>>>manage the symptoms,
> >>>>>>>but we should not allow ourselves to be used by the
> >>>>>>>Pharmaceutical Co.'s
> >>>>>>>like specimens in a living laboratory; and continue
> >>>>>>>accepting  that there
> >>>>>>>are serious side-effects leading to complications and
> >>>>>>>subsequent death.
> >>>>>>>Parkinson's in its self does not cause death. As long as
> >>>>>>>we remain silent
> >>>>>>>the Pharma co.'s will continue to go unchecked, making
> >>>>>>>obscene profits, and
> >>>>>>>convincing the medical world that fatalities, from
> >>>>>>>side-effects, are an
> >>>>>>>acceptable percentage; like a form of collateral damage.
> >>>>>>>
> >>>>>>>Like someone else mentioned, there's no drug on the
> >>>>>>>market which cure's; in
> >>>>>>>nearly all cases they are designed to control/suppress
> >>>>>>>the symptoms; and
> >>>>>>>virtually all have side-effects. The Pharma Co.'s are not
> >>>>>>>interested in
> >>>>>>>Cures because there's no long term revenue stream. Yet
> >>>>>>>they spend billions
> >>>>>>>in research, supposedly on finding cures but only ever
> >>>>>>>launch more drug's
> >>>>>>>that manage/control and sell at ridiculous prices, which
> >>>>>>>they justify
> >>>>>>>because of the high R&D cost. A disgusting example of the
> >>>>>>>consequence of
> >>>>>>>this, is the denial of a drug for MS, for my neighbour,
> >>>>>>>because his
> >>>>>>>age/profile fails the benefit/cost criteria, as set by
> >>>>>>>the NHS, BECAUSE OF
> >>>>>>>THE HIGH COST OF THE DRUG. Personally, I think he's
> >>>>>>>better off without the
> >>>>>>>drug.
> >>>>>>>
> >>>>>>>I have taken Permax/Pergolide for almost 6yrs;
> >>>>>>>side-effects - vasculor
> >>>>>>>damage.
> >>>>>>>
> >>>>>>>Mirapex - side effects as noted.
> >>>>>>>
> >>>>>>>Sinemet -  increased dosage leads to accelerated
> >>>>>>>depletion of natural
> >>>>>>>dopamine and subsequent loss of effectiveness.
> >>>>>>>
> >>>>>>>We live in an age of technology; we have the power of the
> >>>>>>>internet to access
> >>>>>>>data, share findings and prepare/collate results. PD may
> >>>>>>>affect our ability
> >>>>>>>to walk but it hasn't taken away our capacity to think
> >>>>>>>and argue our case.
> >>>>>>>As long as we have our minds, we can [should]
> >>>>>>>constructively challenge the
> >>>>>>>status-quo; and force changes in diagnosis and
> >>>>>>>alternative therapies. We owe
> >>>>>>>it to ourselves and to future generations, to do so, tto
> >>>>>>>contain and sink
> >>>>>>>this Neurological 'iceberg'.
> >>>>>>>
> >>>>>>>Marco [UK]
> >>>>>>>
> >>>>>>>
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