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Ariela, DBSs definitely tamed my bilateral tremors, but that is all. the PD meds don't help me at all. Ray ----- Original Message ----- From: "ariela" <[log in to unmask]> To: <[log in to unmask]> Sent: Friday, March 18, 2005 12:17 AM Subject: Re: (my progress report) / AMANTADINE... ? / calibration > dear hilary, > > just the information i'm looking for!!! what you're telling is amazing > stuff! and yes, yes, i realize PD is a snowflake disease and everyone > responds differently, but still, this is quite the endorsement for > amantadine! you say it worked well for you for 6 years. heck, we'll > take 3 years. we'll take one. sure beats DBS right now!! > > and re. DBS: i was under the impression the procedure worked best to > alleviate tremor -- less so for rigidity, and/or dyskinesia.... ? am i > off-base on this? can you, or anyone else, please stir me right? > > as to new stuff coming down the pike, i hear you. although personally > i'm less excited about rasageline -- which is basically a variation on > selegeline (or 'eldepryl'). in fact, my Big Next Hope is ROTIGOTINE > which is a new receptors-agonist that most importantly has a 24-hr. > delivery system -- i.e., it comes in a transdermal patch that introduces > the drug into the system continuously and evenly. now THAT in itself > sounds to me like a novel, sound approach! (if only the drug companies > would concentrate on formulating levodopa as patch-delivered!). but > regarding rotigotine, add to it the fact that for a NEW agonist, it has > shown, in replicated trials, a huge statistical improvement in on/off > times, and i say (to steal a line), rotigotine, do i hear you... :) > > thank you very much again, > > cheers, > ariela > > ==== > >> Ariela, >> >> About six years ago,, my dyskinesia became so bad that I volunteered >> for DBS surgery - then still in the pre-trial phase. But before my >> turn came, I read on this list about someone who took amantadine >> and how it almost miraculously cured his dyskinesia. I persuaded my >> doctor to let me try it, and within 24 hours I no longer matched the >> requirements for volunteering for the DBS trial! >> >> Now, 6 years later, it is losing its effect, and I am left with >> increasing dyskinesias and dystonias. I have taken every PD >> medication that there is, and the best response was with amantadine. >> Until recently I was taking eldepryl too, but that seemed to lose its >> effect, so I am sticking to my sinemet and amantadine and eagerly >> waiting to see what is new coming down the pipeline. (Rasagaline, do I >> hear you?) >> >> hilary blue >> > ==== >> >> ariela wrote: >> >> >rick, >> > >> >a new movement disorder neurologist we've now been seeing at mount sinai >> >in new york has told us that amantadine is the drug of choice for >> >dealing with dyskinesia. it's the first i hear this take about this >> >little-used drug.... but we're still keeping this option open as my >> >PWP is now trying stalevo (after 4 years on sinemet + requip). he's >> >having an awful time just getting calibrated -- he moves instantaneously >> >between long and painful freezes to awful states of badly spastic >> >dyskinesia. there's just never a simple 'quiet,' 'calibrated' time. >> >it goes without saying that the dosages and frequency have been tweaked >> >and re-tweaked, to not much avail... :( >> > >> >does it sound familiar to you, or anyone on the list? can anyone >> >please share what you do/have done/know about it? ( >> > >> >many thanks, >> >ariela >> > >> >==== >> > >> >>But I just figure it might be worth a little extra pain in order to put >> >>off those nasty >> >>diskenesias.... >> >> >> >>Enjoy! >> >>Rick McGirr > > ---------------------------------------------------------------------- > 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