Re: liquid Sinemet/BRIAN COLLINS/DBS

[ariela <b_ariela@xxxxxxxxxx>]

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
> 

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