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Bravo! I'm glad someone else said it. I'm glad for your "mistake." David >From: ariela <[log in to unmask]> >Reply-To: Parkinson's Information Exchange Network ><[log in to unmask]> >To: [log in to unmask] >Subject: Re: liquid Sinemet/BRIAN COLLINS/DBS >Date: Fri, 17 Jun 2005 05:20:46 -0400 > >sorry, folks. my mistake -- this was a thread that started on CARE which >i erroneously continued instead on PIEN.... :( > >ariela > >==== > > > considering DBS works best for tremor, i find this indiscriminate >pushing on PWPs who present with mostly freezing and rigidity, really >devious and disingenuous. and then there's the fact this procedure is >good -- when it is -- for about 5 years (as you then have to deal with >disease progression). not to mention the fact that DBS has been touted >as "reversible" brain surgery (compared with pallidotomy). well, thank >you very much -- like plugging electrodes into your brain and then removing >them years later (that is, if you lucked out and didn't catch a nasty >infection in the process), will not leave any scar tissue! yeah, >completely reversible. > > > > i don't remember if that was you who quoted the article re. a starting >neurologist with a NEW thriving practice -- servicing DBSers who are in >search of regular follow-up maintenance. small wonder the MDSs are >actively recruiting for DBS surgery. i wouldn't mind so much if at least >they've made a gesture of perhaps first looking to exhaust other drugs, >different dosages, other delivery systems! > > > > it's a shame! one must become one's own 'disease manager,' as if it's >not enough just being its victim.... :( > > > > ariela > > > > ==== > > > > > > > do you, or anyone else, know whatever became of brian collins? is >he > > > > still alive? did he ever go thru the transplant? how did he >fare? > > > > > > No, Brian seems to have disappeared from the net. No news at all >unfortunately > > > but he had certainly thought about optimizing PD treatment. > > > As for DBS, I also find it frightening. > > > When first ´invented´ here in France some 10-12 years ago, few were >performed > > > because there were not so many units equipped for it. The waiting list >was > > > very long, 2-4 years in some places. It was thought to be ´the >solution´ of > > > the time that could benefit most PWPs. Later, they started talking >about it > > > benefitting about 25% of PWps. That figure ( at least here) has >dropped down > > > to 10-15%. > > > At first, they operated on PWPs with many years of PD, regardless of >age. Now, > > > they won´t operate on patients older than 70 and not before careful > > > psychological/psychiatric screening. > > > True, the technique has helped a lot of people but obviously is not >for all. > > > Brian had the right attitude I think. There comes a time when all >medical > > > treatment has been exhausted and one must think of something else. >That is > > > why he volunteered for the cell implant. > > > I can see why Medtronic is pushing for it, and some neurosurgeons >too.... > > > Here, medical publicity is not allowed and you could never see adverts >for DBS > > > as you do in the US. > > > Maryse cg JOhn 76,16 > > > > >---------------------------------------------------------------------- >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