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--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