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Dr. Hodgens: Thanks very much for your interest in my post to the Parkinson list. I am much more comfortable on the ASKING end of questions, especially with a PhD, but I'll try anyway. If you, or anyone, notice any errors please feel free to correct them. I think the subject is far too important not to. > Dear Janet, > > Since leaving the PARKINSN list I have had more time to read some old > postings. I came across yours and read it with interest. It touches on > several issues of interest to me, especially the rate of progression of PD. I > know it is variable but your statement: "also the fact that time to disability > may vary as much as 40 years..." is fascinating. Do you have more on that? My estimate to disability has evolved over time. My original neurologist told me it might be three years or it could be twenty years until disability. After I joined the Parkinson list, there was Don who is around the 30 year mark, and of course there are various degrees of disability, but he is still installing sump pumps and patios. What I really had in mind was death, since disability is so variable. I believe there have been at least two people on the list that have passed the 40 year mark, and if you count the encephalitis lethargica patients who developed Parkinsonism as a sequelae, it would probably be as much as sixty years to death. When I give the two year figure I think of the very sad account of Janet Johnson whose husband wrote of her very brief battle with Parkinson's to the list awhile back (see archives) and also the people on the Shy- Drager list who sometimes have a very short time until the disease takes their life. I realize that Shy-Drager is thought of as a new rare disease, but I believe it is just Parkinson's with more severe symptoms, which we would all develop given enough time, and many of which I had already developed before I made the changes I spoke of and began to improve rather than the rapid deterioration that I had before then. > Concerning your hunch about oxygen and PD...you may be able to track down some > supportive material if you find people who have PD and who have also developed > COPD and who are on continuous O2. Secondly, you might want to talk with > PWP's who have had heart attacks and find out their experiences with their PD > while they were on O2 with respect to their symptoms (provided they were still > receiving the same amount of parkinsonian agents as they usually received in > the community) > Your idea about COPD (Chronic Obstructive Pulmonary Disease) is a very good one, but I would not have access to patient's records, and I would think that tracking down the combination of COPD & PD might be a pretty difficult task. However as you said there are probably numbers of PDer's who have had oxygen for a variety of reasons besides the people that I have already mentioned and it would be interesting to hear of their experiences. > You may also want to talk with Hershel Toomin ([log in to unmask]) concerning > your hypoperfusion hypothesis. Hershel has been developing an interesting > gizmo (description at end of this post) which measures areas of oxygen > hypoperfusion in the brain and correlating that with a person's EEG. He has > found interesting and I think significant clinical implications with this non- > invasive technique. I asked him a question a few months ago about how that > might be of value for people with PD and he said that while he had not > actually explored that area, he thought there would be merit. Thanks for the abstract and it does sound like it might be helpful. I am not alone on the hypoperfusion thought. The following about SPECT scanners is is taken from Dr. Iacono's "Victory" website about pallidotomy -) James B. Slater, Ph.D., is Director of Nuclear Pharmacology for the Loma Linda UniversiTy > Medical Center. Among his other assignments, he oversees the generation of brain scans by the > SPECT system. > > Similar in some ways to Positron Emission Tomography (PET) scan, the SPECT system is brand > new technology that has been available for less than a year. A coordinated set of three scintillation > cameras scan the patients brain. A computer quickly converts all of the camera data into brain > cross-section video pictures that show viable tissue, and different colors can be assigned to show > different levels of demand for nourishment (blood) within the brain so the metabolic activity level of > different regions of the brain can be quantified. > > Dr. Slater is working with Dr. Iacono as they make new discoveries about PD by means of the > SPECT scanner. "Results of the scan are showing us that Parkinson's patients have a greatly > reduced flow of blood to the brain before receiving a pallidotomy," states Dr. Slater. "As soon as > the morning after surgery, scans show a greatly increased flow of blood to the brain tissue. We > observe dramatic improvement in frontal lobe function by increased blood flow and metabolism; > possibly impacting depression, motivation and the higher human attributes. We have been doing this > test for several months now, and follow-up testing shows that circulation continues to improve as > time passes." > > Dr. Iacono is guarded about drawing conclusions too soon, but conjectures that stopping the > hyperactive phenomena in the Parkinson's brain may allow circulation to return to normal. While > there may be no new brain cells available, he postulates that there are probably some number of > neurons that have been suppressed, not working very hard, that could be pressed into more > vigorous service, thus improving the mental and physical functioning of the patient. Dr. Iacono and > Dr. Slater believe that as they are able to compile more data, SPECT will help them come closer to > knowing what causes PD and how symptoms can be fully alleviated. >Janet, since I am basically just sending in material to the list just >from >time to time, I would appreciate it if you would let me know if this >generates > any interesting discussion. As all the veteran list members know, I've been harping on this theme for quite some time and many people have commented on it at various times, although sometimes I feel like I'm standing in cyberspace talking to myself (you notice that I keep quoting myself). There's probably some psychiatric term for it. I really wasn't quoting myself, it was because I wrote an email to myself and when I started to answer it it just came out that way .....WHATEVER. Thanks again for your interest & comments, Janet Cornwell (AWRIGHT YOU-GUYS IF YOU GOTTA KNOW 46/6) [log in to unmask]