Quest for Cure Update: 4/28/04
Hello! Everyone! I have been thinking of all who are dealing with the difficulties PD and other conditions present and hope this update letter will provide some relevant information for those searching.The Quest is "alive and well" and we are learning more and more ways to actively search out what is needed to arrive at better answers. Judd is doing amazingly well! Just this morning when I asked him "would you like me to put your pants on?" He replied, "They would work better on me." With the new rehab designed chair he no longer suffers with pain and sores so we are getting close to being ready to do some traveling! A road we will have to go down, during the interim to the definitive cord cell therapy becoming available, is to find a place where Abilify or Memantine are being used in PD patients with hallucinations. Since it is an "off-label" usage there are limited places to get access to the knowledge needed to even decide whether to attempt them in combating the ever-intrusive hallucinations Judd is experiencing. The Gainesville VA does not have such a situation, though they are trying to research some possibilities for us. We are going to be very cautious, and expect far more information to be presented, before we go into another "experimental" situation, such as we did with the Clozapine. Isn't it amazing how Dr. Garg is running into so much delay on a procedure that is not experimental (he knows what the results will be - given all the normal risks of any surgery), but we all deal with "experimental" usage of medications every day because no doctor can say how one medication will work differently from patient to patient - it is a known "trial and error" situation, with much of the error sending people into complications of living that can be so life threatening in themselves i.e. swallowing, breathing, skin breakage, urinary, problems, etc. Anyway, we've been there, done that and plan to be extra careful this time. One reason I'm now committed to go into the Patient Education field - so much more can be done pertaining to surgery, medication, or preventive medicine than is getting done now - just going to take a lot of people to help us all out!
Anyway, the Quest has moved into a new level of communications. Please note:
(352)490-7052 home
(352)490-6716 fax anytime
(352)490-6135 QC hotline anytime
If you receive a voice mail on any calls, rest assured I will get back to you shortly, as we now have national local calling service too. I'm still working to get my webpage "on track" - so if there are any webpage "guru's" out there with a little time to spare.. Good communications is going to be so vital to getting the answers to where and what can lead us all to a better day and a better future - remember, we all have the right to live to be 120yr old!( And without ill health, if we can all work together effectively toward WELLNESS). Just think of all the combined years being lost by the attitude that over 50 is "getting old" - phooey! We say..Judd and I have a combined time of 112 possible years of LIVING to do! Still welcoming anyone to join us on our Quest for the Cure as we search out and find ways to live better..
S.F. and Callie Marie Judd www.questforcure.net
----------------------------------------------------------------------
To sign-off Parkinsn send a message to: mailto:[log in to unmask]
In the body of the message put: signoff parkinsn
