Samantha Graves-Brownell’s Post

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Development Writer Hoosac School

Reading through the latest stash of medical records, the importance of continuity of care becomes obvious. There is literally a telephone effect happening in his chart. A presumption of an underlying condition with Fahrs as a secondary possibility becomes Fahrs during the transport stage. You can see doctors questioning this diagnosis throughout the process because of the progression before he is moved to AMC, but once at AMC, the presumption is made that it is Fahrs. It's easy to see how this happens. And with Richard, his death was eminent, so whether or not they called it Fahrs or Prion or an unknown, he was dying. However, it's clear there are errors and assumptions made that became the foundation for later assessments. Hence a few weeks in PT, where each session eroded his energy. It helped me to see that doctors were trying to ascertain how this might be Fahrs despite the rapid progression. I'm not sure why prion is never suspected - the early MRI and CT both show some atrophy in the brain, but maybe it's just so rare, it's not on the radar. In the end, where this would have helped is in the handling of his death. I certainly would have taken my house off of the market and set him up earlier with Hospice at home. This is the secondary reason I am so eager to get his records into the right hands. Researchers are not only working to find a cure for these rare diseases, but they are also bringing about the diagnostics to aide families in making decisions about the care their loved ones receive. Toward good care and a good death. We should receive the results of the secondary MRI study on Monday.

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