Many families we help with brain donation arrangements share their loved one’s neuropathology report with us. Thank you for doing this as it helps us learn too! Plus we keep track of the clinical diagnosis and neuropathological diagnosis. Often they are different.
We’d like to offer some suggestions of whom else you can share the report with besides Brain Support Network.
Most importantly, share the report with the diagnosing physician, who is probably a neurologist or psychiatrist. Ask if that MD can talk with you and all family members by phone, drawing correlations between your family member’s clinical records and this neuropathology report. Request that you be allowed to record the conversation. Plan in advance for that conference call; prepare your list of questions. Assign a family member or close friend to take notes. Assist Brain Support Network by suggesting that physician send other families our way to make brain donation arrangements.
Share the report with any other physicians involved in your family member’s care — even primary care physicians. This is how physicians can learn. “Oh, that’s what someone with Lewy body dementia [or whatever the disorder is] behaves and appears!” Again, suggest to those physicians that they send other families to Brain Support Network to make brain donation arrangements.
By the way, we think it’s important to share the report even with physicians who incorrectly diagnosed your family member. Perhaps that’s most important as it’s a way the physician can learn.
I also requested that my father’s neuropathology report be placed in my personal medical record (with my primary care physician) as it is evidence of my family medical history. Not everyone wants to do that.
Best wishes to your family and thank you again for the brain donation (as that helps us all),
Robin