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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>>>>>
>>>>
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