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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] >> >>>>>>> >> >>>>>>> >> >>>>>>---------------------------------------------------------------------- >> >>>>>>>To sign-off Parkinsn send a message to: >> >>>>>>>mailto:[log in to unmask] >> >>>>>>>In the body of the message put: signoff parkinsn >> >>>>>>> >> >>>>>> >> >>>>>>---------------------------------------------------------------------- >> >>>>>>To sign-off Parkinsn send a message to: >> >>>>>>mailto:[log in to unmask] >> >>>>>>In the body of the message put: signoff parkinsn >> >>>>> >> >>>>>---------------------------------------------------------------------- >> >>>>>To sign-off Parkinsn send a message to: >> >>>>>mailto:[log in to unmask] >> >>>>>In the body of the message put: signoff parkinsn >> >>>>> >> >>>>> >> >>>> >> >>>>---------------------------------------------------------------------- >> >>>>To sign-off Parkinsn send a message to: >> >>>>mailto:[log in to unmask] >> >>>>In the body of the message put: signoff parkinsn >> >>> >> >>>---------------------------------------------------------------------- >> >>>To sign-off Parkinsn send a message to: >> >>>mailto:[log in to unmask] >> >>>In the body of the message put: signoff parkinsn >> >> >> >>---------------------------------------------------------------------- >> >>To sign-off Parkinsn send a message to: >> >>mailto:[log in to unmask] >> >>In the body of the message put: signoff parkinsn >> > >> > ---------------------------------------------------------------------- >> > To sign-off Parkinsn send a message to: >> > mailto:[log in to unmask] >> > In the body of the message put: signoff parkinsn >> >> ---------------------------------------------------------------------- >> To sign-off Parkinsn send a message to: >> mailto:[log in to unmask] >> In the body of the message put: signoff parkinsn >> > > ---------------------------------------------------------------------- > To sign-off Parkinsn send a message to: > mailto:[log in to unmask] > In the body of the message put: signoff parkinsn ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn