 |
 |
-------- REPLY, Original message follows -------- ---------- Original message------------ > From: Carol Walton \ America On-Line: (carolsmtn) > To: Robert Martone \ PRODIGY: (Bob_Martone) > Subject: Nancy > I was hoping you would put something in your great update about Nancy- -how was > the trip to NIH--did we make any progress???? Look forward to seeing you both > next month--when do you arrive in DC???? I want to hear some good news about > Nancy--love, Carol -------- REPLY, End of original message -------- Carol, Really looking forward to seeing you and the rest of the gang in DC at the Forum. We will arrive around noon on Sunday the 13th. Thanks for asking about Nancy. We are entering the final stages of PD, probably have been for a while but have been fighting too hard to acknowledge it (22 years now). I think if we can get her back problems/pain alleviated there is still much that we can enjoy as a couple. Nancy still loves to swing a golf club and when she is "on" and free of pain she even looks like a golfer. So we are focused on her back and the dreaded on/off phenomenon. Her "off" periods can be quite disabling as the freezing puts severe limits on mobility. The good news is that the Doctor, a very kind and gentle man with great communication skills, offered a list of suggestions, all of which make sense to us and all of which we will no doubt try. The list runs the gammit from simple changes in medications to more surgery. The order in which we will be pursuing his suggestions follows: 1. Try increasing both the Sinemet and the Permax 2. Add amantadine back to the daily schedule. Some recent work he has done still shows amantadine as a very useful drug. (We have always had great success with amantadine, but it usually loses its effectiveness after six months and requires stopping for a while and then restarting again. 3. Clozaril is an antipsychotic that was added last year to Nancy's daily diet. It has been very effective but requires weekly blood tests and is a real pain to get subscriptions filled when traveling. Since we are planning to travel after I retire next week, this has become a big issue. There are two alternative drugs one available in the US, named Olanzapine and one not yet available Ondansetron. Our doctor, here in Houston, does not want to switch Nancy to the one that is available because he believes it is not as good and has more side effects. The other drug he was not familiar with and will check it out. Also the Clozaril weekly FDA required testing should be lifted soon and changed to monthly. This will help a great deal if we stay on clozaril. 4. Apomorphine is available in Europe, Australia and other places but not yet in the US. He says it seems to work very well for people who get caught between doses and suffer from freezing. Dr. Jankovic here in Houston is starting apomorphine trials and we tried to enroll Nancy this week but because of her pallidotomies she can not enter the study but is on the list to be contacted when the drug is available for distributiom. This drug is interesting in that it will be available via pump, suinge, lozenge and nose spray. Side effects include nasal membrane swelling and the usual assortment of nausious feelings. 5. Revisit the lesion sites of her two pallidotomies. The Dr. suggested that we should have received more relief from the dystonia that is creating all the back problems. Expanding the lesion site may be very helpful. the Doctor asked us to forward Nancy's MRI's so that he could review them with a Doctor Lins(sp?) at John Hopkins. This is certainly of great interest. More surgery is never looked upon enthusiastically but if the report comes back saying it is worth a try we will consider it. 6. An lastly, there is a new stimulation site in the subthalamus that is producing excellent results in France. Here in the US we are doing Pallidal and Thalamic stimulator implants but not subthalamic. After we have exhausted the first five options we will pursue number 6. Hope you find this interesting. Please feel free to share it. As we now know there is a wide variety of opinion and some great information available just by sharing situations like ours. In fact I think I will share this with the list now too. -- [log in to unmask] Kingwood, TX