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Whew. Where do you live, David? Maybe someone on list can refer you to someone competent enough to treat you appropriately. There actually are some decent physicians around who are human beings first, doctors second...people who are willing to treat the entire patient, not just the symptoms. We've been fortunate enough to meet some of them...not all, mind you, but some. My fave neuro story is about the dr. who treated my husband (also David) for 20 years w/o a diagnosis. He tested David with all kinds of stuff...you name it...and then said that he had no idea what was wrong. While he was in the process of discharging David from the hospital after yet another test battery, I asked him, "What about the cogwheeling of his right shoulder?" "What cogwheeling?" he asked. Hoo boy. That was the first thing that I'd told this yahoo...that the first symptom I'd noticed was when David cogwheeled his shoulder/arm while pouring a glass of milk. From that point on, he gave David sinemet...and proceeded to rubber stamp the scrip for the next 20 years. The last time we saw him, I asked him what David's problem was. His answer? "Darned if I know. It's not Parkinson's. I've been treating Parkinson's for 25 years, and David doesn't have it." "Then, why sinemet?" was my next query. Answer? "Because it works." My next question was about the toxins in the atmosphere in the environment in which David worked. "Nah," he replied. "If it was the toxins, then his brother (David's partner in the service station business) would also be ill." What a jerk. Even I, a non-medical person, knew that every person reacts differently given the same environmental stimuli. David had a particularly sensitive system, different from his brother's. David had lots of allergies, but his brother didn't. I stood up in that dr.'s office, told David that we had to leave, and later told him that we'd never go back there (David had refused to leave this guy all these years, regardless of my growing frustration. Too bad. There was no longer any place for David's feelings for this "charmer," because we needed some kind of answers. "Darned if I know," wasn't good enough for me. David would have gone on for the rest of his life with this guy just so long as he didn't have to change to someone new.). It was about 5 years later that we met the neuro who runs a movement disorders clinic out of North Shore Hospital in Manhasset, Long Island, NY. He diagnosed David with PD. I often wonder why people would go into neurology as a profession. It's so difficult, because it's still an unknown science. If one is into research, I can understand, but why go into something where, all too often, there are no cures...much less answers. Personal opinion here: some of the personality issues in dealing with these doctors stem from that fact...it's a way of protecting themselves from people who want/need answers and can't get them. Each human being responds differently to confrontation. Perhaps these quirky people just don't know how (or don't want to learn how) to reach out to their patients just when the patients and their families need some kindness, some reassurance that the doctors are on their sides...not just sitting on their thrones pronouncing judgments. Sad. Ok...I'm off my soapbox now. Bev ----- Original Message ----- From: "DAVID LEWIN" <[log in to unmask]> To: <[log in to unmask]> Sent: Saturday, May 06, 2006 2:00 PM 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