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hi all as judith just told us: >>Dear list friends: >>Our friend Joe died today after a three-week >>battle we thought we were winning... we have to learn from this dreadful loss ... there, but for grace ... the following is a thread of a public/private conversation i shared with judith in re her efforts on joe's behalf under these circumstances i feel there cannot be any 'secrets' 'diplomacy' be damned janet ---------------------------------------------------------- Date: Tue, 29 Dec 1998 05:23:19 Subject: Re: A PWP needs help ---------------------------------------------------------- hi judith At 00:54 1998/12/29 -0500, you wrote: >Dear listmembers, >A PWP friend is in hospital due to medication problems, >and I'm hoping that someone can help me understand what >is happening. Since being weaned off Tasmar early this >month, my friend has gone steadily downhill, but it isn't >just been because of the Tasmar. I feel his medications >have been out of control for a long time. why do you feel this? how old is he? how long has he had pd? how long has he been taking sinemet? >He was taking Sinemet, regular and CR, but his dosage kept >climbing. He had been part of a Mirapex study, and continued >taking it when the drug study was finished. I thought he should >be able to decrease his Sinemet intake, but because he felt he >wasn't getting much effect from Mirapex, was this confirmed by the drug study? why did he continue taking mirapex? >the Sinemet was increased and he has been taking 1600 to 2000 mg >daily. Then, when Tasmar was approved, it was added and for some >time he was taking all three, still with what I feel is a high >Sinemet intake. During the summer he began hallucinating, was >dyskinetic, experiencing extreme "on/off" times and lost thirty >pounds, so Mirapex was dropped. this sounds like levodopa overdose to me it also sounds like he was getting worse after adding the tasmar so why didn't he take a step 'backwards' by removing the tasmar to regain some ground? >The Tasmar was increased to 600 mg daily, (gradually) which I >believe is the maximum. (?) At some point he was able to decrease >the Sinemet to about 900 mg daily, but that was short-lived and >the Sinemet climbed again. it sounds like he is self-medicating to an over-dosed degree does he see a neuro? has he had a second opinion? has he been evaluated over a period of time [during both 'on' and 'off'] by a movement disorder clinic? >then the bombshell. Tasmar was withdrawn from the Canadian market and >early this month he was weaned off it, and Requip was started. After the >fourth week, though he had titrated up to the recommended amount, he >began having severe "off" times. More adjustments were made, (increase >Requip) but the Sinemet remained in the 1600 to 2000 mg range. Two weeks >ago he got to the point of being "off" more than he was "on." did he back down on the requip to see if the 'offs' were decreased? i'm uncomfortable with all the med switching jumping from one to another to another they can all interact with each other changing one med at a time, very slowly, is the only way to evaluate the effect of that specific med i'm a conservative when it comes to my own brain chemistry and hadn't even taken the plunge into tasmar by the time it was pulled >After a frantic phone call from his wife yesterday, we got >him admitted to the hospital. He hadn't been able to swallow, >he is now almost completely immobile, and in severe pain from >muscle cramping. has he had muscle cramping before? has be been in pain before? would that explain the ever-increasing 'need' for sinemet? how much carbidopa is he getting in a day? >The last instructions from the neuro before he left for Christmas >vacation, were 1/2 Sinemet, 100/25 every 1/2 hour, Requip 1 mg - I've >lost track of how often, Amantadine 100 mg in the morning, Amitriptyline >10 mg at bedtime, Tylenol, and the last I heard tonight was that they >were going to give him morphine, all of which, BTW, is being >administered through a tube in his nose. It seems as if the PD >meds have stopped working. >He is no better tonight and his is wife is exhausted. I'm sorry for >this rambling post but Al and I and a couple of others from the support >group who have been helping as much as we can, are getting tired and we >are all very worried. Any suggestions would be very much appreciated... isn't morphine a no-no for parkies? or is it a no-no with selegiline? i'll have to check it out when was he last in relatively good control? what was he taking then? yikes my instinctive reaction to this tale of meds and symptoms running rampant [apparently] is to pare his meds down to the hard core basics for awhile [at least - that's what i would do if i were in his shoes] i believe that there is some evidence of 'addiction' to levodopa [which i admit to feeling cynical about] i'll go do some digging on that you and al are good friends to have your cyber-sibling janet ---------------------------------------------------------- Date: Mon, 04 Jan 1999 13:41:16 Subject: Re: a PWP needs help...update ---------------------------------------------------------- hi judith At 12:55 1999/01/04 -0500, you wrote, in part: >Just a little before noon, I had a call from our PWP's wife. The MDS >was in this morning and as might be expected, our PWP was "on." The MDS >had all the charts from the nurses and residents, but didn't look at >anything that had been recorded by our PWP's wife. He told her that what >she was telling him didn't make sense. I'm afraid a question I might >have asked is, "What, if anything about Parkinsons does?".... yikes i don't know if i would have been even as tolerant as that his saying that what the mrs had to say didn't make sense rings alarm bells with me as well as his refusal to even acknowledge let alone consider all the detail she recorded it speaks to me of 'don't confuse me with the facts' blindness and 'doctor as god 101' training maybe he feels threatened by others who appear to question his judgment if so - too bad! that's his problem, not your friends' i'm rooting for the side of empathic and logical medical care and if i ever get into a situation like this one i plan on having an advocate like you!!! thanks for the detailed updates, judith it is sad that this type of ignorance still happens but it's good that we can learn from hearing about it janet ---------------------------------------------------------- Date: Mon, 11 Jan 1999 02:16:01 Subject: Re: a PWP friend needs help..update 2 ---------------------------------------------------------- hi judith At 00:57 99/01/11 -0500, you wrote, in part: >...Wednesday we were able to convince the MDS that Requip >was causing problems, so as of Friday, it had been eliminated... >However, he then decided to increase amantadine from >200mg to 300mg a day. This on top of 1600mg of levodopa... >MDS talked about changing the timing of the Sinemet from >100mg every hour to 100mg every two hours next week... so many drug changes in so little time... yikes >our friend, who said he was feeling a little >better and his wife said he is weak but able to move around >slowly on his own most of the time. He still can't swallow >and his speech is somewhat slurred. However, this is a big >improvement from two weeks ago when he was almost completely >frozen most of the time. this is great! why not just slow down on the aggressive treatment and let the poor man's brain adjust to the brain chemical equivalent of a whirlwind-european-ten-cities-in-eight-days-tour: "if this is thursday, we must be in belgium" especially now that he seems to be improving! if i were in your friends' slippers i would want to stabilize the meds right now and let my brain [and my body] take a breather >It does appear that the Requip was not agreeing with our >friend, but I also think he was taken off Tasmar too quickly.... exactly >The latest word on meds change is that the MDS is talking about adding >Permax on Tuesday, but there was no mention of decreasing the Sinemet. >I'm concerned about this... yikes more changes and more meds added to the chemical soup recipe it just all seems so 'hyper-speed' somehow a get-fixed-quick approach? wham bam out the door, sam? is he well enough to go home yet? is there any hope of another opinion or two? not much joy, but them's my two cents janet ---------------------------------------------------------- Date: Wed, 13 Jan 1999 06:32:07 Subject: Re: a PWP friend needs help..update 2 ---------------------------------------------------------- hi judith At 22:18 99/01/12 -0500, you wrote: >I agree that there have been too many medications, too fast. >This MDS arrived in April or May and he is the only one in >and around London. His background is research and I don't >think he knows how to relate to people. He seems to be a >clever man, but he is not very accessible and he seems to >regard anything outside office hours as nuisance calls. my nose smells fear if he has trouble relating to people he likely knows it and also is likely to try to avoid it maybe pd scares him maybe he hasn't dealt with pd patients before? >Things have improved since last Wednesday when I had a go-around >with a smart--- resident twice, who finally sent the MDS to see >us. After firing a lot of questions and observations at him, he >began to realize that we knew what were talking about. good! this is progress! if he is a research oriented medico maybe you can lure him down the path of 'exchanging' ideas with him?? and maybe he feels 'safer' talking with you - not directly with the patient? >J still can't swallow, but today he got the tube in his nose out >and a tube was put into his stomach. Unpleasant, but we think >having the tube out of his nose and throat will help. Apparently >the epiglottis, which is supposed to flip over the windpipe when >eating, isn't moving. They did an endoscopy yesterday to rule out >a lesion or obstruction, and now feel the problem is drug related. >Surprise, surprise! all i can say here is yikes >During the time it took for the endoscopy, J missed a 3 and >4 o'clock Sinemet. Though he was stiff and uncomfortable by 5 >when he finally got his meds, he was still able to walk and get >into bed by himself. Obviously he can do without so much levodopa. yikes again! you are so right! i feel like i have my sinemet level pretty much under control but it is quite 'thin' >Tomorrow the MDS wants to introduce Permax, tho' I would prefer >to lower and try to get him stabilized on Sinemet. He is talking >about lowering the Sinemet as he introduces Permax, so maybe it >will work. We will just have be aware of any adverse effects and >nip them in the bud... you are a wonderful pd advocate and friend you and your wonderful hubby [tell him!] >I just wanted you to know that your observations have been >"bang-on," and to thank you for all your help. thank you for letting me know it really helps me to get feedback >>you care so much - >>it must be frustrating and fulfilling at the same time? >>i'm proud to have you as my cyber-sis > >I do care. Al thinks sometimes I care too much, but I >can't believe that's possible. i agree with you i don't think it's possible either if i care a great deal about others which i do the only catch is i have to care about myself and love myself: 1. just as much 2. first or else i have nothing of any substance to give others >I've never given much thought to the fulfilling part. >It just seems like the right thing to do. what would you have been doing all this time if you hadn't been doing this for your friend? i am convinced we are here to learn and to learn how to love by doing what you are doing you are setting a wonderful example for 1600 plus other people in what caring is all about as well as the techno-side of this pd puzzle... love janet ---------------------------------------------------------- janet paterson - 51 now /41 dx /37 onset - almonte/ontario/canada http://www.newcountry.nu/pd/members/janet/index.htm [log in to unmask]