8/14/04 -
It's about time for an update, isn't it? Between increased needs for Judd's care, school and technology challenges we have been unable to stay in close communication with the Parkinson's community and do apologize for a lack of contact. Correspondence with each of you has been missed and we foresee doing better in the months ahead. The really important event - the opening of a clinic to provide Cord Cell Therapy has not yet occurred - in fact, since Texas A&M did not take the opportunity for the past 6 months to provide a full faculty position for Dr. Garg (an essential item before most types of funding can be secured), he has returned to Pennsylvania to work in the neurosurgical practice which provided the funds for his research and development to begin with. So it may take a longer time schedule than we had hoped for ( it still would only require six months to clinical trial availability if a private investor was procured), but things are still developing in a positive direction on our home care front for getting ready to participate in the pioneering dopamine replacement implantation when it does become available.
Judd's condition is now reflecting the "unmasked" symptoms 18+ years of Parkinsons can put on a person. For the past few months we have successfully discontinued the Sinimet completely, only re-introducing 5mg of Aricept a day and still maintaining the stomach acid reducer (Ranitidine) and supplements of magnesium citrate, essential fatty acids and multi-vitamins. Through this non-reliance on medications, we have learned first hand a few facts we would like to share:
a.. There can be an active, healthy life with Parkinsons - just in different settings than it used to be.
b.. The medications that are designed to mask the symptoms don't always relieve the symptoms, especially if they create others that are actually detrimental to survival (such as infections or other organ malfunctions that can lead to hospitalization - a hazard within itself)
c.. Acceptance of the fact that Parkinsons "marches on", despite whatever the medical community has to offer, coupled with a true, straightforward awareness of what can be expected, can lead to much more effective and life-sustaining ways to cope with the life changes PD presents.
d.. Fear, denial, misunderstandings and misinformation all can lead to complications that can shorten a person's life unnecessarily.
These facts have been realized only after years of tough experiences and may not be known to us yet, except for the specific hope and understanding dopamine replacement research (such as Dr. Garg has accomplished WITH PEOPLE) has provided. It seems that perhaps other research advancements in other areas (Spheramine, DBS, etc) offer people the hope needed to realize these facts and make improvements on their lives also. Have you noticed the article at http://tinyurl.com/6aps3? Dr. Okun was Judd's doctor at the time of our Clozapine trial last August - sure wish he had applied the same reasoning about his medication plan as he shows to be realizing about the Deep Brain Stimulation procedure.we all have tended to put our trust in doctors for knowing what we do need.and research (and our experience) is showing that is no longer the safest approach to take - unless there is a track record of a good relationship with good decision making skills evident.
We hope to discuss in more detail what these facts look like day-to-day on the QC website as well as directly among the many people seeking answers to dealing with the horrendous effects of neurodegenerative conditions of all kinds.
In this update, we also want to issue a challenge to all who desire to be a part of finding reachable answers to correct (not just mask) symptoms for themselves or loved ones. We are asking for help in the direct networking system that can be effective to reach the individual backer needed to provide the neurosurgical clinic needed. We want people who are motivated to start making phone calls, sending letters and investigating contact sources to find the individual private funding to make such a clinic available in the short run. There is no reason Dr. Garg's previously verified research application (though yet unpublished) should not be made available, published, and verified in the United States along with all the other many research endeavors going on. FDA approval is not an issue. It may take the work of those in need the most to make a clinic happen - but in the interest of our own lives, those of our loved ones, and medical advancement it should be done NOW. Dr. Garg, as always, is available for direct contact at [log in to unmask]
We can be contacted at the QC hotline (352) 490-6135 anytime night or day to start pulling ideas together to find that essential support. (If you are receiving this as a direct mailing please be sure to visit our revised and informative website at www.questforcure.net).
May God bless each individual's effort to alleviate the pain neurodegenerative conditions present.S.F. and Callie Marie Judd
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