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David My 1st neuro, the one who diagnosed me, could not be bothered to fill out my disability forms which were ridiculous but essential to my getting $144/mo (cut by 60% due to teacher's pension) 8 years later I still only get $144/mo SSD. I'm not complaining though because the year 2003 I had my DBSs Medicare & Blue Cross PPO paid. Also, my neurosurgeon was super. My 2rd neurologist used to keep people waiting 3-4 hours while young girls went in and out the inner sanctum. I suspected some of the patients had been there from the day before as there were bodies in the hall outside the office. I walked out after making my co-pay one time. He was arrogant, controlling and a real med-pusher. My 3rd neuro was real funny, head of the hospital staff, but the last I heard was up on rape charges by an MS patient. I think he was innocent though. Very funny guy. Shall I go on or have you had enough? You don't always have a choice of MDSs or neuros either. David, those of us who live in the real world are at a distinct disadvantage. We are naked except for our senses of humor. Ray ----- Original Message ----- From: "DAVID LEWIN" <[log in to unmask]> To: <[log in to unmask]> Sent: Saturday, May 06, 2006 11:00 AM Subject: Re: Diagnosis > Dear Mary Ann, > I wish I could report that my personal experiences with doctors were like > the Norman Rockwell portrait physicians that you have known. I was > diagnosed with PD by a doctor I was seeing for the very first time with my > complaint being that I was experiencing some stiffness in the tendon of my > left heal. After suddenly enfolding me in his arms (he smelled bad) and > knocking me over (was he crossing some line here?), he bluntly announced > that he thought it was parkinson's disease. He suggested I get an MRI and > see a neurologist. I left his office in a state of shock and homophobia. > Only later did I learn that the purpose of the MRI was to rule out a brain > tumor. Fortunately, the stress that I experienced from the visit > exacerbated my symptoms so that by the time I had the MRI and saw a > neurologist, the neurologist was readily able to confirm the diagnosis. > However, far from being the warm-hearted, compassionate physician that you > have known, this man made me realize what an insect must experience while > being examined by a scientist through a microscope. He sat in a very > expensive powder blue suit behind his desk which was festooned with golf > knick-knacks. Was it my imagination that he had a small wooden sign on > his > wall that playfully read, "I'd rather be golfing!" He studied me in a > remote but vaguely curious look, as if he had played out this scene so > many > times before, telling a seemingly healthy person that they had an > incurable, > progressive disease, and wondering what defensive measures I would employ > in > my attempt to cope with the bad news. He offered no information. He > dryly > asked me if I had any questions. I had little framework to formulate and > hang a question upon, knowing so little about parkinson's disease. I > stuttered, "Will it effect any of the other organs of my body?" to which > he > answered, "No." We sat in silence, I feeling guilty that I was holding up > a > foursome on the 1st tee at the Westchester Country Club. > > I realized that I had not been medically well served, so I went to another > neurologist. I have a problem when it comes to social situations. When > people learn that I am a psychologist, they immediately think that I am > analyzing them and get very weird, or they take the opportunity to > unburdon > themselves and tell me their problems. So, I was not completelly > surprised > that interlaced with this new neuroligist's routine examine: close your > eyes, finger to nose, stand on your toes, hop on one foot, toe tap,... he > filled me in on his marital problems. "Tap your left foot. My wife is > ruining me with her credit card spending. Tap your right foot. She's > spent > $50,000 on one card alone. Close your eyes and touch your nose with your > right forefinger. I'll never be able to retire. This can't go on. Now > touch your nose with your left finger. Do you think that's fair? What is > the matter with her? Walk up and down. Your walking is good. Now she > wants > to redecorate the house!" > > I gave him what verbal support I could muster and as I left he filled my > arms with samples of Comtan, Requip, and Permax. > > The third neurologist I saw was like the first, although evidently, he > didn't golf. However, he looked quite depressed. He didn't talk much, > but > just sat there looking at me ruefully. As I described my symptoms to him, > he punched the keys on what looked like a little hand held calculator. He > assured me that I could take up to 17 tablets of sinemet without harm. He > dutifuly filled out the disability form from my insurance company. At > the > end of our session, he announced that this was our last session since he > had > decided to devote his practice exclusively to stroke victims. Had I said > too much? > > I decided to go back to the neurologist with the marital problems. At > least > he talked! Here and there I hoped to get a word in edge-wise about my > condition. But alas, it was not to be. It was one of his off days. > There > I learned that he was very angry at the Republican party, particularly > John > McCain. He was shouting so loudly that when I went out into the waiting > room everyone looked at me as if I was a very difficult and dangerous > patient. What had I said to the doctor to upset him so? But at least I > had > a fistful of Sinemet prescriptions! > > Since then I have been called out of the blue by a cheerful neurologist > offering me Deep Brain Stimulation surgery, and did I want to come in for > a > workup? It only involved a hundred miles of traveling and a $100,000. I > said I'd think it over, not wishing to be rude. He assured me it's the > latest, greatest thing, as I hung up the phone. > > So, right now I am between doctors. Actually, I'm between wives since my > wife invited her twenty year Arab old boyfriend to have Thanksgiving with > me > and the kids. Now there would be a Norman Rockwell painting! > > Regards, David > > > > >>From: Mary Ann Ryan <[log in to unmask]> >>Reply-To: Parkinson's Information Exchange Network >><[log in to unmask]> >>To: [log in to unmask] >>Subject: Re: Diagnosis >>Date: Fri, 5 May 2006 08:53:29 -0400 >> >>David, thank you for your very well written expression of how the patient >>and family view Parkinson's Disease. I would disagree with the >>'Albatross' >>reference. My husband is hardly that - even though he is severely >>impaired >>now, he is a treasured member of our family. Our little three year old >>grandson considers him especially precious. >> >>I have been with doctors many times when the diagnosis has been given and >>explained. The wide majority of physicians care deeply about their >>patients >>and are empathetic when identifying a disease process (whatever it may be) >>and it's effects. Most of the time I have been a witness to such >>communication, the physician has asked me to come into the room so that >>when >>they leave, the patient will be able to ask the questions the shock of the >>diagnosis silences. >> >>In my experience, patients deal far better with symptoms if they know the >>cause. Regardless of how the members of this list view PD, most people >>who >>receive the diagnosis are told about treatment options (hope) not the >>long, >>arduous journey ahead. As we all know, everyone's PD path is different - >>some progress only slightly while others crash and burn quickly. It is >>best >>for the patient to be allowed to hope. No one knows what the outcome will >>eventually be, certainly not the doctor. >> >>I'm curious as to why a neurologist would be reluctant to tell a patient >>that the diagnosis is PD. In my experience, that is one of the more >>benign >>diseases a neurologist deals with. What would this doctor, who wrote PD >>on >>a piece of paper, do if he had to tell a patient that they had a terminal >>brain tumor - or ALS. I shiver to think. The guy should be fired. I'd >>find another neuro in a heart beat. >>---------- >>God bless >>Mary Ann (CG Jamie 66/26 with PD) >> >> I don't know how doctors do it. Parkinson's disease is not >>>the worst disease. It gives you time to adjust to your gradual >>>limitations. >>> But I wouldn't want to tell someone they have Parkinson's disease. I >>>wouldn't know how. There's the respect that takes all the fun out of >>>playing doctor. >>> >>>David >>> >>>>Maybe patients should submit suggestions on ways to break bad news ? >>>> >>>>My neurologist left the wwritten diagnosis in front of me and sneaked >>>>out >>>>the >>>>room "to answer the phone" - but I'd guessed anyway. >>>> >> >> >> >>-- >>No virus found in this outgoing message. >>Checked by AVG Free Edition. >>Version: 7.1.392 / Virus Database: 268.5.3/331 - Release Date: 5/3/2006 >> >>---------------------------------------------------------------------- >>To sign-off Parkinsn send a message to: >>mailto:[log in to unmask] >>In the body of the message put: signoff parkinsn > > ---------------------------------------------------------------------- > To sign-off Parkinsn send a message to: > mailto:[log in to unmask] > In the body of the message put: signoff parkinsn ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn