Update 10/25/04 www.questforcure.net
This is going to be more than just an update on how Judd and I are doing in our Quest for a cure. It is also an opinion statement and a plea for people, who can, to become active in helping save lives. It has been over a year now since we started on this concerted effort to find remedial and applicable answers to what we are dealing with (and sometimes not coping real well with) pertaining to the Parkinson's changes. For brevity sake, I am going to itemize the various pursuits we have been involved in since the last update in August:
Medical:
a.. 8/29 Discontinued use of Aricept
9/4 Started into Neurogenics Programme with Dr. Grinstein www.shydrager.com
(has been intermittent in contact and discontinued attempts at dosage levels 10/15/04 due to unavailability of extract - not enough time or data to fairly evaluate the benefits - some evidence of possible positive long term results)
10/18 had to visit VA on urgent visit for pain and possible infection in right eye. Determined to be "leaking" from "bleb" and some hemorrhage (long duration) and surgery option to save eye discussed - opted for no surgery due to risk of general anesthesia use at this time. May have to deal with blindness at any time.
10/20 Notified primary care doctor at VA of intention to postpone her recommended bone density therapy and testosterone patch availability until the mental changes for Judd could be addressed more successfully first.
Research:
a.. Found article by Dr. Jonathan T Stewart, M.D. at Bay Pines VA in Tampa
http://www.postgradmed.com/issues/2003/05_03/stewart2.htm
A must read for anyone working with the mental changes involved in Parkinsons.
a.. "Psychosis in Parkinsons Disease" An interesting article published this August by the doctors who were part of Judd's "Clozapine team" last year.
http://jgp.sagepub.com/cgi/reprint/17/3/127.pdf
a.. Investigated the possibilities of NPH again http://www.allaboutnph.com/DoctorLetter.asp
Ruled out for 1. inconsistency with determining symptoms 2. Would not want to risk the surgery for the reported possible benefits
a.. Investigated Psychosis and PD study being done by Acadia Pharmaceuticals/Dr. Hauser in Tampa, Florida on new drug with different classification than other anti-psychotics - not for Judd due to travel and double-blind conditions (not up for an 8 wk study like he did before on Seroquel). For anyone interested though contact: Holly at University of South Florida - [log in to unmask] or (813)844-4453
b.. Spoke with Dr. Steindler at the Brain Institute at the University of Florida, Gainesville. Great discussion about Stem Cell Research - but no word of any applications being available or any breakthroughs being ready for human benefit anytime soon.
Which brings us back to the only real and promising place for getting something to actually start the process of reproduction of dopamine producing neuronal cells within the brain - in a location and with an application of stem cell research that is ethically and medically viable - Dr. Dinesh Garg's Cord Cell Therapy. Though still at square one on finding a financial source for creating a neurosurgical clinic and starting patient trials, I do have a clearer perspective of the three reasons why he is not finding the support he needs from the academic, medical or business arenas, as confirmed by the research above and conversations directly with the medical community . The reasons are:
1.. Peer Review Process - has grown into a self-serving, restrictive process influenced too often by competing medical concerns, financial concerns and political action. A much needed process, but does not allow for advancement and support of independent individuals who may make life-changing discoveries but does not conform to the peer review community of practice. Peer review has great productive power - but it also known for its abuses and destruction of individuals due to corruption (inherent in all aspects of society, including this one)
2.. Medical Bias - attitudes of labeling innovative, alternative and non-peer reviewed procedures as "charlatans", "con-artists" or just unreliable before being investigated for possible benefits. Funding limitations are an obstacle to government and academic review by institutions (therefore the reliance on "peer review process"), but individuals should still be encouraged to hunt for the truth and be supported in finding it. Whatever "wrongdoers" exist should be dealt with appropriately through legal and medical watchdog channels (including the FDA).
3.. Ethnic Bias - there is still far too much prejudice and illicit discrimination occurring among individuals as well as organizations. Personal advancement of those who are not of the "white Anglo-American establishment" are very distinctly but discreetly being considered and treated as second class citizens - this should not be going on in the United States of America today! The "success stories" are usually tied to large sums of financial resources somewhere along the way.
Dr. Garg has run into each of these areas of difficulty. He has devoted over 30 years to medicine and deserves the opportunity to be a part of the medical community to which he is willing to contribute so much. He may now be contacted by phone at 1-888-763-8799.
His website www.parkinson-disease.net has expired due to unresponsiveness of his webpage builder and maintainer and therefore faces reconstructing a new website. He works each day to continue his work to help people facing health devastation in their lives to survive and make improvements..as we all are faced with waiting.
The pharmaceutical companies are advertising regularly "today's medicine financing tomorrow's miracles" - but "tomorrow" never turns into today - and isn't there something wrong with the picture when the people facing the burdens of illness are considered the financial source for their "miracles"?
As our pace of travel moves from a "steady trot" to a "full gallop".we wish for all to be able to find the support needed to find answers, soon.. S.F. and Callie Marie Judd
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