Where are you located?  Would you like to talk on the phone?

Bev
----- Original Message -----
From: "Chandrashekhar Nagarkar" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Friday, January 27, 2006 9:53 AM
Subject: Re: DBS


> --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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