Parkinson's Disease

[mxc8099]

My wife was diagnosed in the fall of 2003 as having Parkinson's Claire had the stone face, shuffling gait, no swinging of the arm, inability to recover from a slight shove, resting tremors to both right arm and right leg, minuscule writing and a very soft almost squeaky voice....about all that anybody needed to have PD (we had little idea of what PD was all about at the time). She was given a starter pack of Requip/Sinemet and the doctor informed us that there was so much to explain about PD that he did not have the time to do it and left the room. Within days Claire was ever so much better but two months of treatment and she was now just barely walking around the house on her own, in a wheelchair when we went out and could not roll herself in bed at night. We returned to the Neurologist and he informed us that Claire was now into stage two PD and there was nothing more he could do (looking back, that was about the most ignorant thing I have ever heard come from a doctor's mouth) and again left the room. I went to the internet as soon as we got home and began searching for truth....is this as far as a doctor can go with a PWP? I found a Neurologist that answered my questions via an e-mail within an hour of sending it. He was in New York but did come here to Las Vegas once a month and sees patients and he asked that I bring Claire to see him on his next visit. This exceptional doctor not only seen Claire but because we were not covered to see him on my insurance, he took a fee that we could afford. This wonderful man had Claire walking within a month and functioning as a human being again. There was an eight month struggle to dial in her medicines so she was without "off" times and was without the terrible neck jerking that was very painful for her. After four years of being treated by this great man, Claire was at a point that she had virtually no off times and had not had any jerking or tremors or anything....unless she had to go to a hospital or she had to see some other specialist for other reasons. At those times her meds would go crazy off because of medicine interactions, inappropriate timing and or dosaging and substitutions of her specific meds with other meds that were meant for PD but were not what she has been taking.
This woman has been so finely dialed in with her PD medicines that there has been only one Neurologist out of better than a half dozen that has seen her (either because of other issues...the believer...or an appointed Neurologist during hospital stays) that refuse to believe she had PD at all, that is was caused but medicines or whatever.
In December of 2008, her Parkinson's doctor from New York was running such a tight schedual that he was unable to see Claire as often (as Claire would have liked anyway) and promised to "maintain" her via the phone whenever necessary...maintainance is about all Claire has been needing the past year. But because she is so adamant about seeing the doctor in person, I persuaded her to see a local "Parkinson's Specialist". The first visit he told us he did not believe Claire had PD at all and upon her next visit she should stop all of her PD medicine three days before hand so he could determine her state. She stopped all the meds (all at once, immediately per the doctor) and we went to see him three days later. Claire had no symptoms at all and again the doctor said she did not have PD. When we got home I placed a call to her former doctor of several years to ask why no symptoms. Any time there has been even a slight adjustment in the past and her meds go off either up or down, there has been a response within hours. The Doctor told us that it would not be a surprise to him that she might even go as far as a month before showing symptoms. Yet another visit to the new neurologist and her still maintains that Claire absolutely does not have PD. I told him of my phone call to the oter Neurologist and he said that it was impossible to go a month and for that matter to go more than a day or two without having the symptoms..he assured me that Claire would not wake up one morning and be neck deep in PD again...it just would not happen............IT DID, by week three she began showing slight signs. Maybe someone else would not have noticed but I did and can from being with her 24 hour a day, 365 days a year. Week four and she in now in full swing with PD. Her symptoms are now a bit different, she freezes almost always when she is standing and has to turn around or getting into or out of the shower. She shakes throughout her entire body now and the resting tremors seem less but now in both legs. Her voice has gone soft memory has been trashed (in part because of the stress) and now she is in jeopardy of loosing her SS disability. The new neurologist is much too busy to see her within a months time and still maintains that Claire does not have PD...he has yet to see her in this state but I did manage to get an appointment with his assistant within a few days when I asked the recording, after several recordings that is, what I should be doing for Claire.....if she could not get an appointment should I take her to a witch doctor or should I just buy a gun and shoot her in the head? (all rhetorical questions let me assure everyone).
She has an appointment with this nurse practitioner next week and I am most curious what her/his findings will be. If it is determined that Claire does have PD (I think her real Neurologist had told us she was at stage4) I will get the report to her family doctor so that it can be put into her record and then we will go hunting again for someone who is a bit more interested in the medical end of PD and not just the financial end. This man has NO credibility with me and will never treat my wife for anything....if her were ever capable of treating anyone.


Monty Cockerline