Below is a note I sent to Dr. Jelev in Bulgaria. As you can see, things improved greatly for me with treatment. There is no reason your son won't at least remain stable and possibly continue to improve (I continued to improve for at least five years, if not still improving some). Sorry I didn't get back to you sooner. Hope all is well with Carl. Sincerely, Dr. Rob Stall *********************************************************************** To: Dr. Christo Jelev From: Dr. Robert Stall May 29, 1998 Dear Dr. Jelev, I was treated with TM (tetrathiomolybdate) after a short course of penicillamine during which my neurologic symptoms worsened. This was the trigger (neurologic worsening) by which Dr. Brewer recommended I come to Ann Arbor for TM treatment rather than continue on the penicillamine. His initial studies found half of patients treated with penicillamine suffer worsened neurologic symptoms and half of those suffered irreversible neurologic symptoms. Before TM treatment, I could not lift a cup of coffee to my mouth (or any drink, for that matter) without spilling it (I had to use straws while bending my head over to the glass rather than lifting the glass). My wife had to cut my steak when we went out for dinner. My gait was unsteady. I spoke slowly with irregular rhythm (I thought I had developed a stutter from anxiety). I had tremors in my hands, arms and jaw. I was able to drive but my leg was difficult to control when pressing down on the clutch. My writing was very slow, micrographic and tremulous, similar to a Parkinson's patient (in fact, I measured the tremor frequency through my writing and it came out to 6 Hz, approximately the same as the usual Parkinsonian tremor). I had partial KF rings which were difficult to see because of my brown eyes. I was on nortriptyline 25 mg qd to control severe depression that had developed before any neurologic symptoms began. My treatment began in 1989. Most recovery occurred during the 1 year after start of treatment. I still feel like I am improving though this may be through practice and retraining in specific tasks such as sports. Now, no one can tell anything is wrong with me (including neurologists and gastroenterologists). I am living a full life in my medical practice (though I never missed a day of work throughout my acute illness except for when I went to Ann Arbor for eight weeks for inpatient treatment). I can play baseball, basketball and golf as I did in my youth. I speak frequently to community and professional groups about geriatric medicine. Most nurses wonder how I could be a doctor with such good handwriting. After eight weeks of TM, I was transitioned to maintenance zinc acetate 50 mg tid which is the only medication for Wilson's that I am on now. Prozac 40 mg qd controls my past depression well. I hope you can help some people in Bulgaria with TM as I have been greatly helped by this treatment. Feel free to contact me if you have other questions. Sincerely, Dr. Stall Robert S. Stall, M.D. 14 Heritage Road West Williamsville, NY 14221 716 636-7531 FAX 716 636-7532 drstall@acsu.buffalo.edu http://wings.buffalo.edu/~drstall/