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Unread 04-18-2012, 12:48 AM   #1
ol'cs
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being a neuroscientist (15 plus years with pd and getting worse by the month), way back around 2000,(in John Lesters "Brain Talk" forum), i surmised that it was only a few short years before what i termed CELLF technology would soon come of age and ruly, "synthetic" implantable, reliable, and most of all effective, SN (or VT, or whatever basal brain cell population is lost or compromised, in the many different manifested [etiological "forms] that are lumped into what we are told is "parkinsonism") neurons would soon be available for all.
i thought this because at the time great strides were emerging in our ability to clone and culture human cells, and our beginnings of the human genome for gene mapping, plus the beginning of the understanding of complex protein signalling mechanisms and pathways; that it could only be a few short years to "OUR CURE". After all, we had the basic knowledge wrought from the "Swedish implants" of pluripotent (i'm not sure if that is today's correct terminology) fetal cells, I thought that if a few remaining healthy cells in the most compromised areas of the brain-stem that could be identified by then new techniques such as fluoridopa PET scans and even newer as yet to be discovered techniques,then, these CELLF cells micro harvested, cloned and re-implanted and that many of the bugaboos that set back fetal implants on both moral and unsuccessful technical reasons would be moot points in the way of success.
However, i was wrong, and a midst an almost unshakable belief in my fellow scientists, i have no ideas why it is 12 years on, my neuro is still plugging DBS, an expensive and questionable small molecule to "replace" Selegiline", and not much else has emerged despite some hundreds of millions of PD research dollars. I know now my fate. Horrible dystonia, various pain syndromes and restlessness, food aspiration, yada, yada ( that can be controlled effectively with opiates , just take a look at the chemical structure of oxycodone, your 10 year old can spot the "locked dopamine moiety", a perfect "brain penetrable agonist"). But when i came back to the states every physician (read ignorant well studied good doer) said "you've been on opiates much too long) so they took them away from me, and i have never got so bad so fast. Will anybody research this? Fat chance, after all we cant be a bunch of "drug addicts now can we? i am mystified, not even one doc told me that PD was a painful, exceedingly uncomfortable condition. Well. so much for quality of life now, and faith and hope too. cs
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Bob Dawson (04-19-2012), Conductor71 (04-18-2012), lindylanka (04-19-2012), lou_lou (04-18-2012), Onward (04-19-2012), VICTORIALOU (04-18-2012)
Unread 04-18-2012, 07:23 AM   #2
lou_lou
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Heart hi dear cs...

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Originally Posted by ol'cs View Post
being a neuroscientist (15 plus years with pd and getting worse by the month), way back around 2000,(in John Lesters "Brain Talk" forum), i surmised that it was only a few short years before what i termed CELLF technology would soon come of age and ruly, "synthetic" implantable, reliable, and most of all effective, SN (or VT, or whatever basal brain cell population is lost or compromised, in the many different manifested [etiological "forms] that are lumped into what we are told is "parkinsonism") neurons would soon be available for all.
i thought this because at the time great strides were emerging in our ability to clone and culture human cells, and our beginnings of the human genome for gene mapping, plus the beginning of the understanding of complex protein signalling mechanisms and pathways; that it could only be a few short years to "OUR CURE". After all, we had the basic knowledge wrought from the "Swedish implants" of pluripotent (i'm not sure if that is today's correct terminology) fetal cells, I thought that if a few remaining healthy cells in the most compromised areas of the brain-stem that could be identified by then new techniques such as fluoridopa PET scans and even newer as yet to be discovered techniques,then, these CELLF cells micro harvested, cloned and re-implanted and that many of the bugaboos that set back fetal implants on both moral and unsuccessful technical reasons would be moot points in the way of success.
However, i was wrong, and a midst an almost unshakable belief in my fellow scientists, i have no ideas why it is 12 years on, my neuro is still plugging DBS, an expensive and questionable small molecule to "replace" Selegiline", and not much else has emerged despite some hundreds of millions of PD research dollars. I know now my fate. Horrible dystonia, various pain syndromes and restlessness, food aspiration, yada, yada ( that can be controlled effectively with opiates , just take a look at the chemical structure of oxycodone, your 10 year old can spot the "locked dopamine moiety", a perfect "brain penetrable agonist"). But when i came back to the states every physician (read ignorant well studied good doer) said "you've been on opiates much too long) so they took them away from me, and i have never got so bad so fast. Will anybody research this? Fat chance, after all we cant be a bunch of "drug addicts now can we? i am mystified, not even one doc told me that PD was a painful, exceedingly uncomfortable condition. Well. so much for quality of life now, and faith and hope too. cs
hi cs...
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Unread 04-19-2012, 07:33 AM   #3
pegleg
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Default ol'cs always welcomed news

Good to see you ol'cs and lou lou!

Take a look at the discussion in this thread: http://neurotalk.psychcentral.com/thread168380.html

We have had our central nervous system hit! That means every body system we have has the potential to become symptomatic.

We have been putting band-aids on the symptoms for years and years! Sinemet (carbidopa/levodopa) quieted the symptoms enough to keep us quiet - for over 40 years. Then shazam! They find that the pill used to quieten us is causing even worse side effects. S

Someone said they would eventually have to take me off my pain meds. My reply was, "Over my dead body!" A hush hit the roon and I swallowed hard.

We'd better get busy and make lots of noise or it will be just that . . . over my dead body!
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