Dear Bev:
Thank you for your most detailed description of your husband's medical
experience.  The information that you gave reassured me that I am not ready
for DBS.  I have had PD since 1998 with a slow inexorable progression of the
disease.  Fortunately, the slow progression of the disease has given me time
to continually adjust to new levels of limitations.  I used to have times
when my muscles would relax, and a wonderful feeling of comparative comfort
would flow through my body. This recently has disappeared and I am
continually in a state of muscle contraction somewhere in my body.  Toward
the evening I get "twitchy" in my left foot.

When recently I began to find that my muscles would spasm during my sleep
and cause me such pain that I would wake up, I began to think more seriously
of DBS.  But I can still awkwardly walk, have no trouble sitting up, and do
have an hour or so during the day that I can move about with some semblence
of normality.  Also, and fortunately,  I haven't had the experience yet of
falling, although I move with extreme self awareness to move carefully.

Cognitively, I have noticed that I don't get as many questions right or fast
enough on Jeopardy.  But this may be due to a declining interest in popular
music.  (What is all this fuss about Snoop Dog?)

Your husband has been blessed in you for being such a wonderful wife and
caretaker.  I had the extradorinary luck of finding a new wonderful wife
when my previous wife didn't want to have any part of taking care of a
partner who was disabled.

As I live just north of New York, I will keep in mind the doctor referrals
that your mentionned.

Bless you again for being the wonderful and caring person that you are.

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: DBS
>Date: Wed, 25 Jan 2006 22:54:17 -0500
>
>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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