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------------------------------------------------- After my first book, "It’s All In Your Head Living and Coping With Parkinson’s Disease, I had no idea if it would be a success or not. Much to my surprise it was. But my life has changed sense that publication in 1999 due to the progression of the disease. Things that I thought I should know, I didn’t. I t started to leave its mark on my whole outlook of living and dealing with Parkinson’s and my life in general.. Living in today society and how it af-fects our relationships with others, mainly family and friends. For the first time sense my diagnoses and early years of my disease, I really felt that there was a new attitude and approach to my everyday activities and dealing with situations that I had no control over.. It was like I was a different person and attitudes, and it contin-ues at this writing. At times I go into rages for really no apparent reason. I get upset over meaningless things. This is especially true with situations involving my wife of 32 years. Gen-erally a very quiet reserved and calm person, at times it is like there is two of me. I became very concerned about this new revelation. Denial, anger, pity and fear once again began to run through my body.. This may have been a new turn of events but at the same time I tell myself this isn’t the true me. I t has to be the disease process. I soon discovered that for the my wife it was becoming a terrible hardship. Fewer words were spoken between us. I think that I was reaching for anything and this will leave a stamp on my soul as she is my lifetime partner. Parkinson’s disease and my life began playing itself back to me in ful detail, empha-sizing those last months leading to this discovery. Suddenly my mind had started to become a real problem, and was taking me down. The people in my life were starting to doubt me more and more. My life was being torn apart and I really didn’t no how to deal with it. I tried to deal with the fear, but instead I became frantic with the thought. The mind games started to consume me and this was probably my reason for lashing out. I was afraid of losing my independence. The thought of losing a future with those that I care the most was very hard to swallow and will be forever. Then I began to remember the words that my mother had instilled in me and her attitude is mine. "We were not issued any guarantees for our life and we must carry on de-spite t he situation. It wasn’t at this moment that I stepped out of this fog, but it is a begin-ning point Unfortunately I don’t possess all the attributes one needs to retain such a gift , but only few of them would get me started on the rode back. Helplessness is a very empty time and these feelings are ones that we go through when trying to deal with chronic illness and I don’t wish them on anyone but one the other side they must be dealt with as well. My mind and body must be in tune and when this loss of control took place it was one of the horrific transformations I had experienced sense my diag-noses thirty eight years ago. It was like starting all over again. But I realized that I had too deal with it. I had worked hard and now the irritability and fear were part of me again . Was-n’t I too strong to have this happen? No, I am no different than any other person with Park-inson’s and I have to keep reminding myself of this daily. I asked myself over and over, un-derstanding but not understanding. How could I, someone who had spent all of his adult life with Parkinson’s , helping others to help themselfs began to think I should be any different. Although this wasn’t in my plans, I remembered my pledge and I will survive and it is a constant reminder every time I give a talk on "Coping With Parkinson’s" and tell my story. Of course I feel sorry for myself at times, hey I no different and taking it out on those that you love, just because your not always aware of your mood or the workings of your brain, isn’t fair to them or yourself. This loss of control is something I regret but what I know now and I try to understand and try to assure them that I’m not doing it intentionally. I try harder and I realize that I can’t take the entire burden of this disease. Yet through all of these misgivings I have not lost my love of life and I have done many things that othershaven’t been able too. I want to convey the message of hope ask that this disease isn’t about individuals, it is about all of us living and coping together in a manner we can be proud of. Coping & Personality Change Mr Russ Ahlstrom; YOPA Advisor Positron emission tomography, a technique first developed in the 1970s, is the first technology to provide major insight into the metabolic behavior of living tissue. It has been particularly helpful in understanding neurologic disease in living human beings. In contrast to magnetic resonance imaging and computerized axial tomographic scanning which provide highly detailed static, structural images of the human brain, positron emission tomography is unique in its ability to render substantial insights into the functional activities of an intact human brain. The technique is dependent upon the use of specific radioactive isotopes, such as carbon-11, oxygen-15, fluorine-18 and bromine-75, which emit positrons. Positrons are anti-electrons, the antimatter equivalent of electrons. When a positron collides with electrons from surrounding atoms, both subatomic particles are annihilated producing gamma radia-tion, which is detected by the PET (positron emission tomographic) scanner's radioactive detectors. Via computer algorithms operating in three-dimensional space, the information obtained from these radioactive detectors is used to construct highly detailed maps of the metabolic activity of the human brain. Depending upon the type of positron emitting radio-active material that is injected into the patient, one is able to obtain information concerning specific metabolic processes, such as the metabolism of sugars, the consumption of oxygen, blood flow, synaptic activity, and the activity of various brain neurotransmitters, including dopamine. In the case of Parkinson's disease, the most widely employed radioactive material for understanding dopamine metabolism with PET scanning is fluorodopa, labeled with fluorine-18. Fluorodopa is metabolized via dopa decarboxylase, the same metabolic pathway that metabolizes levodopa. The resultant radioactive, positron emitting, fluorinated levodopa accumulates within the striatum (caudate and putamen), releasing radioactive gamma rays that are detected by the PET scanner. This accumulation of radioactive fluorinated levodopa can be measured very quantitatively by the PET scanner. There is a direct correla-tion between the measured level of radioactive levodopa accumulation and the Parkinson's disease patient’s motor function. From this brief discussion, one can see how fluorodopa PET scanning might be very useful in understanding various aspects of Parkinson's disease. Consequently, this technol-ogy has provided us tremendous insights into many features of Parkinson's disease in the living human patient. It is also evident that this technology can be used for the radiographic confirmation of the diagnosis of Parkinson's disease, given that the underlying neurochemical abnormality in Parkinson's disease is dopamine deficiency, which is directly demonstrable by this technique. Nonetheless, the diagnosis of Parkinson's disease remains a clinical one, dependent upon the demonstration of well-defined clinical features of the disorder and the lack of other findings that would suggest an alternative disorder. Conventional neuroimaging with mag-netic resonance scanning (MRI) or computerized axial tomographic scanning (CT) is unneces-sary and not specifically indicated for the diagnosis of Parkinson's disease. These technolo-gies are frequently utilized to exclude a variety of structural abnormalities that might simu-late the findings of Parkinson's disease, but are most certainly not necessary for the diagnosis of the disorder in the vast majority of patients. Positron Emission Tomography (PET) in the Diagnosis of PD By Stephen M. Gollomp. M.D. Clinical Professor of Neurology, Thomas Jefferson Hospital There is no question that fluorodopa PET scanning can reliably support a diagnosis of Park-inson’s disease in the clinical setting where there are features of the disorder without atypi-cal signs. However, there is also little question that the study is not necessary for the ma-jority of patients. In those patients where clinical diagnosis is uncertain or when there are particular research questions to be answered, fluorodopa PET scanning is appropriate and can be very useful. For those patients with atypical signs accompanying the extrapyrami-dal disorder, it may be necessary to perform additional metabolic imaging with an isotope (fluoro-deoxy-glucose) looking metabolism of sugar within the brain (glucose). In summary, metabolic imaging of the brain with PET scanning can be very useful in sup-porting or refuting a specific diagnosis of idiopathic Parkinson’s disease and further deline-ating the possibility of an atypical form of parkinsonism. In the majority of patients, nei-ther metabolic nor structural imaging is necessary to reliably reach a diagnosis. Websites containing information on PET scanning: (www.ctipowersolutions.com/PatientPortal/zportal/portals/pat/) infoforphysician (www.spring.parkinsons.org.uk/SPRING_Times/20/04.html) There is a misconception among the Parkinson’s community (patients & doctors) that there is no scientific test that will diagnose Parkinson’s. In fact the technology does exist and has for over 15 years. "The amino acid [F-18] Fluorodeoxyglucose (FDG) and PET imaging of the basal ganglia is a proven technique in positively diagnosing or “un-diagnosing” Parkinson’s. FDOPA PET images of the brain clearly show if your brain has a deficiency in dopamine synthesis. If it doesn’t, then you do not suffer from Parkinson’s, and your symptoms can be further re-searched, diagnosed, and treated more effectively." -Source: UCLA Department of Molecular & Medical Pharmacology Parkinson’s Disease can be a difficult burden to bear for all of us, playing havoc on our minds and bodies. Ironically up to 25% of those with Parkinson’s are misdiagnosed. This misdiag-nosis rate is fact based on post-mortem autopsy. Most of us do not wish to wait that long to find out if our diagnosis is indeed Parkinson’s and if indeed we are being treated correctly. A FDOPA PET SCAN can decrease the 25% misdiagnosis, re-diagnosis, track dopamine loss, and even diagnosis early onset "before" symptoms appear. Early diagnosis can provide the patient access to therapies, which are more effective earlier in the disease. I have been approved for my PET which will be conducted at UCLA within the next two months. While I am fairly certain that this will not change my diagnosis it will allow me to visibly see the dopamine loss that is causing this "Parkinson's disease" and give me visual proof of the diagnosis vice taping my fingers or wiggling my toes each time I see a neurolo-gist. PET can, and has, indicate with a high degree of accuracy if a movement disorder is Parkin-son’s disease or another type of disorder. F-DOPA and FDG PET scans cost on the average $2100 per test. The test is being more widely recognized by health insurance companies as the word gets out on the benefits of the test. MRI's, the test that almost all PWP's undergo as "routine" cost between $1600 and $1800. Is the $500 cost difference, on average, worth NOT having an F-DOPA PET scan? Please do the research on this test and encourage your doctor to pursue it for you. Many fa-cilities across the US currently conduct FDOPA PET SCANS. A list of these facilities may be found at: (www.snidd.org/petsearchresults.cfm?radiotracerid) For more information on FDOPA PET SCANS please visit the information center on (www.youngparkinsons.com) ------------------------------------------------- janet paterson: an akinetic rigid subtype, albeit primarily perky, parky pd: 56-41-37 cd: 56-44-43 tel: 613-256-8340 email: [log in to unmask] my newsletter: http://groups.yahoo.com/group/newvoicenews/ my website: http://www.geocities.com/janet313/ ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn