Ivan,
I was cheered up immensly to read your article"Genes ,parkinson's
."...etc, it was very informative and positive, perhaps there is some light,
however distant, at the end of this tunnel we find ourselves in.
Best Wishes,
Nigel
----- Original Message -----
From: Ivan M Suzman <[log in to unmask]>
To: <[log in to unmask]>
Sent: Tuesday, February 01, 2000 9:22 AM
Subject: ZPD caused by "HDV" virus:: "Genes, Parkinson's, Viruses and
Research Priorities "
> ^^^^^^ WARM GREETINGS FROM ^^^^^^^^^^^^ :-)
> Ivan Suzman, PWP, 50/39/36 [log in to unmask] :-)
> Portland, Maine land of lighthouses 22 deg. F :-)
> ******************************************************************
> Dear PIEN, and all PD researchers, February 1, 2000
>
>
> The text of my VIRAL origin theory, sent to PIEN on Feb. 13, 1999,
> follows.
> Here, I suggested that Parkinson's Disease is probably viral, and I named
> this hypothetical PD-causing virus "HDV", or Human Dopamine-Deficiency
> Virus.
>
> PLEASE, PWP's AND RESEARCHERS, will you post comments on this theory,
> and on funding priorities? Your comments will help PWP's (persons with
> PD) worldwide, very much!
>
> Thank you to Greg Sterling of Pennsylvania, for retrieving this
> message from the PIEN Archives.
>
> Sincerely yours,
>
> Ivan Suzman tel 207 797-8488 USA
> *************************************************************************
> **********************************
> Date: 13/02/99
> Author: [log in to unmask] (Ivan M. Suzman)
> Topics: Symptom, Parkinson's Disease, Dopamine, Dopaminergic,
> Substantia
>
>
> NIgra, Striatum, Encephalitis, Amantadine,
> Tremor, PWP
>
> """"""""""""""""""""""""Original Message
> Begins""""""""""""""""""""""""""""""""""""""""""""""""""""""
>
> GENES, PARKINSON'S , VIRUSES and RESEARCH PRIORITIES
>
> by Ivan M. Suzman, PWP
>
> I am now 49. For at least 13 years, I have lived with visible
> symptoms of "young-onset" Parkinson's Disease (PD). The internal systems
> of my body are now ruled by this unwanted condition. My response to
> light, my tolerance of sound, my ability to maintain balance, my response
> to cold or to heat, and my sexual function are among many autonomic
> responses that are being devastated.
>
> I offer here, especially to interested persons such as Mr. Safra
> and other financiers, whose financial positions and generosity may lead
> to the eradication of this horrible malady, some thoughts on what
> Parkinson's is, and how I would direct research monies to be invested. I
> hope that these thoughts will stimulate decisive commitments to a
> diversity of inspired researchers. I invite discussion.
>
> ------------**********---------------
>
> Parkinson's Disease is one of many names for a group of
> potentially fatal conditions which are all human dopamine deficiency
> disorders (DDD's). Wide speculation about the cause or causes for the
> onset of DDD's continues. Frequently mentioned are toxic exposure,
> radiation, endosomatic trauma, viral infection or exposure, inherited
> genetic change and aging.
>
> I see any DDD as an unfortunate proof that genetic change causes
> biochemical malfunction. Any possible cause of a DDD depends on the
> susceptibility of normal genetic material to alteration. Gene sequences
> which would normally code for the production, recognition, transport and
> uptake of dopamine,such as sequences involved in controlling the 5-step
> pathway from tyrosine to adrenaline, including DOPA, dopamine and
> noradrenalin as the intermediate steps, and gene sequences involved in
> the distribution of dopamine from the dopaminergic cells in the
> substantia nigra to the anterior part of the ventral striatum to motivate
> eating behaviors, and to the posterior part of the ventral striatum to
> motivate movement, are where I would focus basic research.
>
> This research might be achieved at the NSF or at the NIH or in
> private laboratories.
>
> Although I am no longer a professional scientist involved in
> direct research, I was. I have been an NSF peer grant reviewer in
> Physical Anthropology. I feel that the advances in cellular research
> which are directed to locating the genetic controls on dopamine
> production and distribution are the key areas of research that ought to
> be funded. I believe that funding, whether in the private sector, or
> through the promise of the $100,000,000.00 Udall Act in the USA, and
> similar measures that may become law elsewhere on the planet, should be
> concentrated on such gene systems.
>
> In recent weeks, Dr. Richard Palmiter of the University of
> Washington, working with Cell Genesys in California, has reported
> extraordinary and promising results in mice which were initially
> genetically engineered to have a DDD essentially equal to human
> Parkinson's Disease. I talked with him on Wednesday. Some 20 out of 23
> of these mice in his laboratory have been returned to virtually normal,
> after the introduction via injection of a virus produced at Cell Genesys,
> Inc. of California.
>
> From talking over the telephone to Gerry Haines of Bethlehem,
> Pennsylvania, whose husband, Brig has PD, I discovered that the
> American-based Parkinson's Alliance is discussing the prioritizing of
> research money that it may be able to generate. I am very encouraged by
> her hopefulness, and she asked me to write the following brief summary of
> my thinking at this time.
>
> I believe that it is quite possible that a VIRAL origin of human
> Parkinson's is likely for at least a significant proportion of DDD's
> worldwide.
>
> Consider a few interesting facts:
>
> (1) The well-known post-swine flu encephalitis of the early part of
> this century caused innumerable cases of "Parkinson's Disease" to
> develop. These were memorialized by Dr. Oliver Sachs, in his book,
> Awakenings. The movie, "Awakenings," forever and indelibly imprinted in
> our memories by screen stars Robert De Niro and Robin Williams, recalls
> the early use of L-dopa to cause movement and communication in "frozen"
> hospital patients. The key point is that these people had been exposed
> to a devastating virus.
>
> (2) It is very well known that amantadine, actually an ANTI-VIRAL
> drug, reduces tremor in PWP's (people with Parkinson's). Antibiotic drugs
> have also been reported to quell the symptoms of PWP's.
>
> (3) Horses in, I believe, Germany, develop an equine variety of DDD
> after exposure to the Bern virus. I believe this report was released in
> 1998.
>
> (4) Taiwanese women with Parkinson's are mentioned to be,
> interestingly, post- herpes viral victims.
>
> (5) I also believe that recently there has been work to show that
> Multiple Sclerosis can be attributed to the Herpes virus number 6.
>
> (6) I read in the New York Times about four years ago of a young
> boy whose Duchenne's Muscular Dystrophy was being treated with
> genetically-engineered dystrophin, a man-made protein predicted to
> restore normal movement to that patient.
>
> These 4 pieces of important evidence ( 1 - 4 above), and 2
> observations about related neuromotor disorders ( 5 and 6 above) can all
> be used as CLUES in support of the idea of a VIRAL origin for human
> Parkinson's Disease. Identification of this PD virus, much like the
> current battle against the Ebola Virus, and also in light of the last 15
> years of worldwide, coordinated research to contain the Human
> Immunodeficiency Virus, should take top priority in virology and public
> health.
>
> To emphasize the urgency, I would simply say that my own ability
> to live any tiny remnant of a disease-free life is very unlikely to
> extend beyond 50 or so, unless something DRAMATIC happens soon in
> research laboratories!!
>
> In epidemiology, we recently have seen the intriguing paper by Dr.
> Tanner of California. She claims that 90% of the PD cases are due to a
> toxic event. I am not so sure that her paper presents any unassailable
> evidence of toxic exposure. A viral origin for DDD's might also
> meanwhile explain her PD evidence on twins. Twins, whether identical,
> fraternal or sororital, if sharing the same bedroom, could come into
> contact with a PD-causing virus with greater frequency than siblings of
> different ages.
>
> Let us for the moment assume that ALL DDD cases are due to either
> viral exposure or to other causes capable of breaking up and rearranging
> the normal amino acid sequence of either DNA, or the messenger RNA
> templates that ultimately produce DNA.
>
> This assumption would give us a conceptual framework to understand
> virtually all case of "Parkinson's Disease," no matter what the cause.
> This framework strongly points towards viruses.
>
> Now, a few thoughts on the "cure" for Parkinson's Disease. Dr.
> Palmiter's mice are injected with a man-made virus created at Cell
> Genesys, a virus that takes over the animals' mRNA templates for the DNA
> that codes for the enzyme tyrosine hydroxylase. This injection causes
> the correct DNA sequence to be relaid, so that dopamine is produced, and
> amazingly, the genetically-sick mice LOSE ALL SIGNS of Parkinson's
> Disease, except some slowness of movement in some of the mice.
>
> The sick mice not only move again. Their DDD does a disappearing act
> !! The sick mice seem to recover from the weight loss that threatens
> them Their will to eat returns, along with their normal gait and
> posture.. How strikingly reminiscent of the problems we PWP's have with
> protein absorption and body weight loss that frequently assert themselves
> in the middle and later stages of our various DDD's.I am going through
> this ordeal now, and it is VERY difficult to control!!
>
> All it took was the correcting of a jumbled gene sequence to end
> the DDD in the mice.
>
> I am ready to volunteer myself to Genesys, or to any laboratory
> that can learn how to examine with repeated and consistent results, the
> DNA sequence in human white blood cells, and of course in particular, the
> DNA of PWP's. As long as published, repeatable methods are used, I
> would REALLY like to imagine that it won't be that long before a viral
> means of transporting the instructions to manufacture a corrected DNA
> sequence, perhaps in the form of an injection, will be the magic
> instrument that we PWP's in this Parkinson's-unfriendly world need.
>
> By taking such hopeful steps, we can enter what Judith Richards calls
> a new "era." And step forward we must , so that we not only talk about,
> but are participants in, a planetary effort to END Parkinson's DIsease.
> Only then, will the coming of the millennium seem truly meaningful to me.
>
> Intensive and competitive research in virology, epidemiology and
> public health, along with basic research in neurological biochemistry and
> in human genetics, could be the basis of a coordinated program to
> eradicate Parkinson's DIsease from the planet.
>
> BIg words, big ideas, and above all, HOPE, must be the at the center
> of a global plan of attack. Personally, I am saying, why not dream for
> the stars? Mr. Ali's steadfastness, and Mr. Fox's hopefulness are both
> inspiring the world as the race for the cure begins. I only hope that Mr.
> Fox's cure comes before he is 40, NOT 50, as he usually says.
>
> And, I see an all-out, worldwide ATTACK on what I will call the
> Human Dopamine-Neutralizing VIrus, or " HDV " as the direction that can
> usher us all into an era of radical action, and unending hope.
>
> After all, I am a PWP myself, and have my life to lose to this
> devastating disease if a cure is not found. At age 49, I am at least 13
> years of noticeable symptoms into a DDD called "Young Onset Parkinson's
> Disease," I see only the PUSH for the genetic explanation of PD in human
> beings as the pathway to unravelling the PD mystery, and to preventative,
> genetic treatment for HDV-positive persons.
>
> With our eyes looking forward,
>
> (Prof.) Ivan M. Suzman, young-onset PWP
> Portland, Maine, USA
> tel 207 797-8488
> e-mail : [log in to unmask]
> _____________________Original Message
> Ends_______________________________
>
> If you wish to link to this post in a web page or email, use the URL
> http://parkinsn.coles.org.uk/Parkinsons/PARKINSNLog.nsf/ByKey/FF2944184B2
> 9911
> -------------------------------------------------------------------------
> -----------------------------------------------------
>
