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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
>
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Week 4 October 1997, Week 3 October 1997, Week 2 October 1997, Week 1 September 1997, Week 5 September 1997, Week 4 September 1997, Week 3 September 1997, Week 2 September 1997, Week 1 August 1997, Week 5 August 1997, Week 4 August 1997, Week 3 August 1997, Week 2 August 1997, Week 1 July 1997, Week 5 July 1997, Week 4 July 1997, Week 3 July 1997, Week 2 July 1997, Week 1 June 1997, Week 5 June 1997, Week 4 June 1997, Week 3 June 1997, Week 2 June 1997, Week 1 May 1997, Week 5 May 1997, Week 4 May 1997, Week 3 May 1997, Week 2 May 1997, Week 1 April 1997, Week 5 April 1997, Week 4 April 1997, Week 3 April 1997, Week 2 April 1997, Week 1 March 1997, Week 5 March 1997, Week 4 March 1997, Week 3 March 1997, Week 2 March 1997, Week 1 February 1997, Week 5 February 1997, Week 4 February 1997, Week 3 February 1997, Week 2 February 1997, Week 1 January 1997, Week 5 January 1997, Week 4 January 1997, Week 3 January 1997, Week 2 January 1997, Week 1 December 1996, Week 5 December 1996, Week 4 December 1996, Week 3 December 1996, Week 2 December 1996, Week 1 November 1996, Week 5 November 1996, Week 4 November 1996, Week 3 November 1996, Week 2 November 1996, Week 1 October 1996, Week 5 October 1996, Week 4 October 1996, Week 3 October 1996, Week 2 October 1996, Week 1 September 1996, Week 5 September 1996, Week 4 September 1996, Week 3 September 1996, Week 2 September 1996, Week 1 August 1996, Week 5 August 1996, Week 4 August 1996, Week 3 August 1996, Week 2 August 1996, Week 1 July 1996, Week 5 July 1996, Week 4 July 1996, Week 3 July 1996, Week 2 July 1996, Week 1 June 1996, Week 5 June 1996, Week 4 June 1996, Week 3 June 1996, Week 2 June 1996, Week 1 May 1996, Week 5 May 1996, Week 4 May 1996, Week 3 May 1996, Week 2 May 1996, Week 1 April 1996, Week 5 April 1996, Week 4 April 1996, Week 3 April 1996, Week 2 April 1996, Week 1 March 1996, Week 5 March 1996, Week 4 March 1996, Week 3 March 1996, Week 2 March 1996, Week 1 February 1996, Week 5 February 1996, Week 4 February 1996, Week 3 February 1996, Week 2 February 1996, Week 1 January 1996, Week 5 January 1996, Week 4 January 1996, Week 3 January 1996, Week 2 January 1996, Week 1 December 1995, Week 5 December 1995, Week 4 December 1995, Week 3 December 1995, Week 2 December 1995, Week 1 November 1995, Week 5 November 1995, Week 4 November 1995, Week 3 November 1995, Week 2 November 1995, Week 1 October 1995, Week 5 October 1995, Week 4 October 1995, Week 3 October 1995, Week 2 October 1995, Week 1 September 1995, Week 5 September 1995, Week 4 September 1995, Week 3 September 1995, Week 2 September 1995, Week 1 August 1995, Week 5 August 1995, Week 4 August 1995, Week 3 August 1995, Week 2 August 1995, Week 1 July 1995, Week 5 July 1995, Week 4 July 1995, Week 3 July 1995, Week 2 July 1995, Week 1 June 1995, Week 5 June 1995, Week 4 June 1995, Week 3 June 1995, Week 2 June 1995, Week 1 May 1995, Week 5 May 1995, Week 4 May 1995, Week 3 May 1995, Week 2 May 1995, Week 1 April 1995, Week 5 April 1995, Week 4 April 1995, Week 3 April 1995, Week 2 April 1995, Week 1 March 1995, Week 5 March 1995, Week 4 March 1995, Week 3 March 1995, Week 2 March 1995, Week 1 February 1995, Week 4 February 1995, Week 3 February 1995, Week 2 February 1995, Week 1 January 1995, Week 5 January 1995, Week 4 January 1995, Week 3 January 1995, Week 2 January 1995, Week 1 December 1994, Week 5 December 1994, Week 4 December 1994, Week 3 December 1994, Week 2 December 1994, Week 1 November 1994, Week 5 November 1994, Week 4 November 1994, Week 3 November 1994, Week 2 November 1994, Week 1 October 1994, Week 5 October 1994, Week 4 October 1994, Week 3 October 1994, Week 2 October 1994, Week 1 September 1994, Week 5 September 1994, Week 4 September 1994, Week 3 September 1994, Week 2 September 1994, Week 1 August 1994, Week 5 August 1994, Week 4 August 1994, Week 3 August 1994, Week 2 August 1994, Week 1 July 1994, Week 5 July 1994, Week 4 July 1994, Week 3 July 1994, Week 2 July 1994, Week 1 June 1994, Week 5 June 1994, Week 4 June 1994, Week 3 June 1994, Week 2 June 1994, Week 1 May 1994, Week 5 May 1994, Week 4 May 1994, Week 3 May 1994, Week 2 May 1994, Week 1 April 1994, Week 5 April 1994, Week 4 April 1994, Week 3 April 1994, Week 2 April 1994, Week 1 March 1994, Week 5 March 1994, Week 4 March 1994, Week 3 March 1994, Week 2 March 1994, Week 1 February 1994, Week 4 February 1994, Week 3 February 1994, Week 2 February 1994, Week 1 February 1994 January 1994 December 1993 November 1993
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