Guest guest Posted July 19, 2002 Report Share Posted July 19, 2002 Hi All, I spoke with Dr. Parisi at Mayo Clinic today re: the results of the autopsy of my father's brain tissue. The autopsy confirmed the dx of MSA. Dr. Parisi said it was a " very typical " case of MSA specifically the SND variety, which he said was what they see the most of. He said the degeneration was widespread, indicating, as we suspected, that my father was very far along in the course of the disease. I mentioned to Dr. Parisi that my father had been dx only a little over a year before he died and just two years after being dx with PD and that we wondered why his disease progressed much more rapidly than most others with MSA. (His decline seemed so rapid to us. At the time of his dx in 1/01 he was still walking and driving. By 9/01, he was in a w/c full-time and when he died in 4/02, he was already needing help eating, etc.). He said that rather than the disease progressing at vastly different rates in different people, they now think that some people may have brains that seem to be more " elastic " (for lack of a better word) and they are better able to deal with the degeneration for some time, and the sypmtoms aren't as noticeable. After a while, the brain loses that " elasticity " and the sypmtoms come on all at once, making it appear that the disease is progressing very rapidly. Does that make any sense? He also found changes consistent with someone who has had pneumonia immediately before death. I have always thought that Daddy had pneumonia that just wasn't caught. I have to admit that I'm bothered by that. While I know that it doesn't change anything, I still wonder if we had gotten him to the Dr. if something could have been done. I also found it interesting that my father had minimal neurodegenerative changes (those that come with normal aging). The Dr. said he had very few changes for a 70 year old man. I suppose that's why my father still seemed so sharp, even if he had some trouble making himself understood. Dr. Parisi stressed again how important and valuable brain tissue donation is in the fight to find a cause and cure for MSA. I know our family gets a lot of comfort knowing that we might be helping that effort, if only in some small way. Anyway, I just thought that information might be of some help or interest to others on the list. in OK __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2002 Report Share Posted July 20, 2002 , thank you for sharing the results of your dad's brain autopsy with this group. It adds to all our knowledge of this very insidious disease. As Dr. Parisi notes, the more we examine tissue the more is learned. I have requested papers for tissue donation but have not heard from Mayo yet. Your father's death too soon was not in vain if any benefit can come of this procedure and I believe it will. Love and peace barb pond blacksburg va Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2002 Report Share Posted July 20, 2002 Thanks for sharing the results of your Dad's autopsy. Ned has paperwork for brain donation from Vanderbilt and hopefully this research will help people in the future. Love & Prayers, Judy and Ned B. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2002 Report Share Posted July 21, 2002 Greetings (in OK, of course) ! Let me tackle a couple of your questions. I hope it will help you feel better about your situation, and the situation your father faced. You wondered about: > He said that rather than the disease progressing at vastly different > rates in different people, they now think that some people may have > brains that seem to > be more " elastic " (for lack of a better word) > and they are better able to deal with degeneration for some time, and > the sypmtoms aren't as noticeable. After a while, the brain loses > that " elasticity " and the sypmtoms come on all at once, making it > appear that the disease is progressing very rapidly. Does that make > any sense? Okay, I will give this a shot. Let me first make an analogy. Imagine someone created a computer that could rewire itself if there was some sort of problem on the CPU chip or computer board. If part of computer fails, it could create new connections to do exactly the same job. It takes a licking, but keeps on ticking! Now in the real world, imagine neurons in our brains are connected to tens to hundreds of other neurons. Some of those connections are strong some are weak. Unlike a computer neurons create multiple connections to do a specific job. The more we exercise that capability, the stronger the connections. If for some reason one of the neurons dies, then the other connections step up to the plate to pinch hit for the dead neuron. Think of it as a very elaborate system to allow the body to continue to function even if a part of it fails. Does this happen? Yes! Researchers found patients, who suffered a mild to moderate stroke, could regain most of their capabilities by using only the affected limb. So, if one arm became very weak after the stroke, use only it. This forces the body to strengthen some weaker links. Making it even more remarkable, researchers found brain cells are created in adults, if the person is actively working at re/learning a knew skill. As an example, researchers in London decided to study the London cab drivers. Part of their entrance exam is to learn ALL of London (called The Knowledge). It typically takes these cab drivers two years of constant study. Starting with prospective cab drivers, the researchers studied the changes in their brains. As they progressed, the area for storing active memory grew consistently and significantly. New brain cells were created to learn new skills. The same thing happens when someone suffers a degenerative neurological disorder. Some people are naturally able to compensate by naturally strengthening those weaker links when a few neurons fail to function. As this progresses, the brain starts to rely on fewer and fewer neurons. They appear normal, but loose more and more ability to adjust to the change in their brains. Eventually, it turns into a house of cards that apparently suddenly collapses. Other people are gradually impacted by those symptoms, and the disorder appears to progress over a long period of time. For some reason, these folks (I raise my hand here) do not quickly and easily adapt to the changes. Their brains are not a 'elastic' (or also termed as 'plastic'). Their brains are not as malleable. They do not change as easily. Your father was blessed with a brain that allowed him to live a near normal life until the very end. It was sudden from the outside, but a long progression on the inside. What a blessing that must be. > I have always thought that Daddy had pneumonia that just wasn't > caught. I have to admit that I'm bothered by that. While I know > that it doesn't change anything, I still wonder if we had gotten > him to the Dr. if something could have been done. Okay, let me make this very clear. Do NOT feel guilty. Had you gone to a doctor, it would have been brushed off as well. Why? Remember your father's autonomic system was failing rapidly. It was no longer able to function on the few remaining neurons. So, he probably had almost no cough reflex. And his temp was probably all over the place, so how to sort out what's real and what is not. This was probably aspiration pneumonia (from some food entering the lungs). Again, without normal reflexes this happens. NO ONE would have caught pneumonia without the classic symptoms. So, PLEASE do not lay that guilt at your feet. You did a wonderful job of caring for and about your father. Accept the praise and marvel that your father did so well, until the very end. THAT is a true gift from God for your father and you. Regards, =jbf= B. Fisher Quote Link to comment Share on other sites More sharing options...
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