Guest guest Posted March 2, 2002 Report Share Posted March 2, 2002 Sally, Gosh, I was wondering about your first brain donation email, thought you were going to donate yours ) (now). Hugs, Bill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2002 Report Share Posted March 2, 2002 Sally, When the Moller's told their boys that was donating hie brain to science, his kid said " Hey dad do it now, why wait " too ) I am sure if you ask your daughter if doctors are always correct, she may have to rethink her answer on leaving everything to medical professionals. Sorry, but two heads are ALWAYS better than one, even I have learned things from my grandsons about engineering. Mitch at two years old taught me about designing toys, if he could not open something, he dropped it on the floor, if it did not open - he went to the stairs and threw it down the stairs - it either opened or broke. I am around the medical profession a lot these days. I know that every medical professional is an individual, just as we are different, they are different. If you are human you make mistakes (except me that is ) I always ask questions, it never hurts to ask. Wellll, it may hurt if you ask your doctor if he ever had a brain. I have found that how you ask the question is as important as asking it. If the doctor thinks you are asking because you are interested, you will get a better answer. Note, a good 30% of the nurses I have met, could USE some training in psychology - they NEED to learn to handle people. They also need to learn that the patient is their customer, and in good business - the customer is always right - or at least needs to think they got their way. Take care, Bill Sally Lesline wrote: > Bill > Actually it would be the only way I would get into Harvard!! > My # 1 daughter tends to think I don't use my brain so she would agree I > could go ahead and do it now. Umm... wonder how she thinks she got to > the place she is at now without me using my brain. > > I'm always amazed that my super-smart daughter, the nurse, is the one > who gets the most upset when I start doing research in medical areas. > She says that's what we pay Dr to do and the average person doesn't know > enough about the real medical side of things and we should stay out of > it. Needless to say, we clash head on about this so I try to side step > it as much as I can as we will never agree on it. > > Of course she is also the one who can't believe I actually teach this > stuff. What amazes me is how little she does know about some stuff she > should know. I always tease her about the fact that she must have > skipped all those classes as a college student that I teach. When she > was studying for her nursing boards I couldn't believe how little she > knew about human development and psychology and it upset her to no end > when I could answer more of her questions than she could. It didn't > take long before she refused to let me help her study. > > Aren't children great !!!! > Sally > > If you do not wish to belong to shydrager, you may > unsubscribe by sending a blank email to > > shydrager-unsubscribe > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2002 Report Share Posted March 2, 2002 --Sally I give you a BIG THUMBS UP!!!!!!!!!!!!! Belinda - In shydrager@y..., " Sally Lesline " wrote: > Bill > Actually it would be the only way I would get into Harvard!! > My # 1 daughter tends to think I don't use my brain so she would agree I > could go ahead and do it now. Umm... wonder how she thinks she got to > the place she is at now without me using my brain. > > I'm always amazed that my super-smart daughter, the nurse, is the one > who gets the most upset when I start doing research in medical areas. > She says that's what we pay Dr to do and the average person doesn't know > enough about the real medical side of things and we should stay out of > it. Needless to say, we clash head on about this so I try to side step > it as much as I can as we will never agree on it. > > Of course she is also the one who can't believe I actually teach this > stuff. What amazes me is how little she does know about some stuff she > should know. I always tease her about the fact that she must have > skipped all those classes as a college student that I teach. When she > was studying for her nursing boards I couldn't believe how little she > knew about human development and psychology and it upset her to no end > when I could answer more of her questions than she could. It didn't > take long before she refused to let me help her study. > > Aren't children great !!!! > Sally Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2002 Report Share Posted April 21, 2002 They will give you a full autopsy report including what it truly was. It will take up to 2 to 3 months normally. You may receive a statement earlier than that telling you what he died from but the paperwork should come within 3 months. I would not contact the doctor unless you feel you really need to talk with him. He will send the results when they are available. Take care of yourself, the next several months will be hard ones. Make sure you do allow yourself time to grieve. Sally in KS Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2002 Report Share Posted April 22, 2002 : We sent ken's brain tissue to Mayo and they told us that he had Parkinson's and Diffuse Lewy Body Disease but not Shy-Drager Syndrome. that diagnosis did help to explain why his symptoms were somewhat different from most of the people on this list even though he had wild variations in blood pressure and would pass out very easily. most of his symptoms did indeed sound like MSA, but he had a very good response to Sinemet, and he was diagnosed with Parkinson's for over ten years before the Shy-Drager symptoms appeared. The DLBD diagnosis also helped to explain why Aricept worked so amazingly well for Ken but not for many others. Our experience was that we tried almost everything we could, and some worked and some didn't and the actual diagnosis was not important except statistically. I was so sorry to hear about your father's death. It is almost a year since Ken died, and I find I am remembering the good times and forgetting the bad. This is what I had hoped would happen, and I hope will happen for you. Love, Barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2002 Report Share Posted May 20, 2002 Hi Aletta, Yes according to the information on the Vanderbilt site, viewing would still be possible. http://www.mc.vanderbilt.edu/gcrc/adc/brain.html Hugs, Pam brain donation > For the sake of my offspring, I wanted to donate my brain. If it is > genetically linked or as a result of a common exposure, better they should > know. If the rest of you should benefit as well, it is an even sweeter > deal. My daughter did express concern that the body would still be > viewable - does anyone know? > > aletta mes > vancouver, bc Canada > web: http://aletta.0catch.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2002 Report Share Posted June 2, 2002 Sally - Don't know how long we have, but want to be prepared. And if we can help others by donating, all the better. Thanks so much for the info Barb S in MD Re: Brain donation > > > > Hi Erma, > > > > There are two places I know of that accept brain tissue from > MSA/Shy-Drager > > patients. > > > > 1. Vanderbilt University, Nashville, TN > > 2. Mayo Clinic, Rochester, MN > > > > Below is information from Vanderbilt followed by a letter from Dr. > Benarroch > > at Mayo Clinic. Either of these facilities will be glad to help you > arrange > > for brain tissue donation. > > > > Hugs, > > Pam > > > > --------- > > > > Vanderbilt Brain and Spinal Cord Donation Program > > > > Many patients express an interest in making a contribution to medical > > science to further research in the cause of neurodegenerative > disorders. In > > Shy-Dryger syndrome, also known as MSA, scientific study of human > brain > > obtained after death holds the greatest hope for further understanding > and > > ultimately development of therapies to treat the disease. The > post-mortem > > examination, or autopsy, also provides important, precise medical > > information to the family of the deceased. > > > > Information for Patients > > > > You may wish to sign a notice of intent to make your desire for organ > > donation official. This notice of intent is not binding, but conveys > your > > wish and request in writing to your family members that you wish to > > participate in the brain and spinal donation program. > > > > Information for Next of Kin > > > > Your affected family member may wish to donate brain tissue for > special > > studies and research purposes. You can concur with that decision by > signing > > a separate consent for the donation which is often attached to his/her > > medical record. Upon death of your loved one, you will need to sign > an > > autopsy permit which gives legal consent for a medical doctor to > examine the > > body and in particular, collect brain tissue. > > > > We know that this will be a very difficult time for you and we > acknowledge > > the generous gift and courageous act that tissue donation is for the > benefit > > of others. You should know that tissue removal can be done in a way > that an > > open-casket service can be conducted. > > > > For More Information > > > > Please contact: > > > > Ms. Velma Watkins > > Autonomic Dysfunction Center > > Vanderbilt University Medical Center > > AA-3228 Medical Center North > > Nashville, TN 37232-2195 > > Phone: > > Fax: > > E-Mail: velma.watkins@... > > > > -------- > > > > Letter from Dr. Benarroch at Mayo Clinic: > > > > Dear Sir/Madam: > > > > The cause of the disease that is afflicting you, called multiple > system > > atrophy or Shy-Drager syndrome, is not known. In other similar > > disorders, such as Parkinson's disease, important advances are being > > made in the understanding of the mechanisms that trigger the loss of > > nerve cells, and these will hopefully lead to treatments that may stop > > or at least delay the progression of the disease. > > > > One important clue about the cause and mechanisms of this group of > > diseases is provided by the postmortem examination of the brains of > > patients who die from these disorders. Over the past four years, we > > have been pursuing these studies, funded by the National Institutes of > > Health (NIH). We have made some advances, but there are still many > > questions that remain to be answered. We would appreciate your > > considering donating your brain for our study at the time of death. > > Your contribution will help many other patients suffering from this > > still incurable disease. If you consent with the brain donation, > please > > contact me or one of my co-workers at the Mayo Clinic, Rochester, > > Minnesota. The address is: > > > > E. Benarroch, M.D., D.Sci. > > Neurophysiology Laboratory > > Mayo Clinic > > 807 Guggenheim Building > > 200 First Street SW > > Rochester, MN 55905 > > Phone: or > > Fax: > > E-mail: benarroch.eduardo@... > > > > Many thanks in advance on behalf of many other patients with > Shy-Drager > > syndrome. > > > > Sincerely, > > > > E. Benarroch, M.D., D.Sci. > > > > > > ----- Original Message ----- > > > > > In the past I have read that someplace likes brain donations to > study > > > after death. I would like to know who to contact for this and where > > > it should be sent. I'm sure arrangements need to be made before > > > death. I think any one who is open to this could help the cause and > > > Dale has been open to the idea. > Thanks, > > > Erma Dean > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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