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] >>>>>>>> >>>>>>>> >>>>>>>---------------------------------------------------------------------- >>>>>>>>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