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Hello. My name is Stacey I was diagnosed in August of 2005 after four years of going from one doctor to another I had shoulder surgery, Botox injections, pain blocks, four MRI's, Lots of blood tests, physical therapy and 2 spinal taps. Spent lots o money on rolfing, massage, feldencrist, accupunture legal drugs(Vioxx, Bextra, Vicodin, Plavix, Neurontin, Baclofen etc..) and non-legal drugs to deal with PAIN and spasms. I could not work I was in so much pain. I was divorced (after 16 years) downsized and then told my problem was in my head. A Rheumatogist referred me to the ALS institute in SF. There I was given nerve test and a walk down the hallway and other motor test. There I got the news. It was obvious to them what I had. I got a second opinion and she confirmed it. It was classic symptoms of PD. It was obvious and why did not the other 3 neurologist figure it out? For one thing they did not spend the time with me, threw drugs at me and I was too young to have PD.! I think the thing to remember is that doctors are highly paid technicians not gods or goddesses. Some will keep up on the latest medical news, innovations and breakthroughs most will not. Some are more concerned about the money and keeping their trophy wife happy. Some are burned out and need to move on. They are not all the same and it is up to the "client" or "patient" to be even more determined to understand their own condition and to be aggressive and relentless to get the answer.. After 18 years I lost my livlihood in HiTech due to PD. My new vocation is E-Bay afficiando and book keeper . I have two children to raise 9 and 14. There is life after the diagnosis. My ex-husband told my kids not to scare my boyfriend away because It will be hard to meet someone new due to my "condition" and "age". Well you know what? my boyfriend is still around, he asked me to be his wife, even though of the PD. He comes to my doctor appointments. Its hard to believe there are people like that out there but there are!! PD is my condition it is not who I am, and for now a small part of my life. And yes it takes one day at time. I dont know how long it will take for the PD to take me over, however it wont be soon. **&k it. Just keep moving on. Dont let the *(&%%*)(ards get you down!!!!!!!!!!!!!!!!!!!!!!!! Exerscise, exerscise and more exerscise. Take the pharmacutical grade Co Q10, vitamin E, C, Glucosimine. As my great, great, great uncle Sir Captain James Lawrence said "Dont Give Up the Ship". No one can ask another to be healed. But he can let himself to be healed and thus offer the others what he has recieved. Who can bestow upon another what he does not have? And who can share what he denies himself. A course in Miracles Stacey -----Original Message----- From: DAVID LEWIN <[log in to unmask]> To: [log in to unmask] Sent: Sat, 6 May 2006 14:00:03 -0400 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