The last puzzle piece.

[Mikey12345]

Haven't written in weeks but feel the need to share with you. I received the final puzzle piece so much earlier than I was told. It was suggested that brain donation autopsy results take up to 6 mos but I just received them at 3 1/2 mos.

I can't tell you how shocked and rather disappointed I am! My precious husband did not have CBD, but rather Lewy body dementia with late stage Alzheimer's! I spoke with the pathologist as well as the dr we have dealt with at the Hospital of the University of Pennsylvania. I asked how 3 neurologists specializing in these diseases could have been wrong. He said they weren't really wrong, that Michael did not have signs and symptoms of those diseases but moreso CBD. Even the gross pathology report was CBD but not the microscopic. Now I understand why they can't really definitively diagnose without autopsy.

I guess I am disappointed because these diagnoses are more common and I could more easily accept a very rare diagnosis. My first question was one of his course of treatment. I was assured that had they known the diagnosis, he would have gotten no other therapy other than possibly trying some Parkinson's drugs which probably would not be effective since he had no classical symptoms. Also I was told the outcome would not have been different. I am so thankful for that. I know what I would have done with the guilt had it not been so. Still in shock.

It's 14 weeks today since Michael passed and the emptiness seems to get worse. I went to a bereavement breakfast for the 1st time today and felt very uncomfortable. I was so much younger than anyone else and felt out of place yet the young widow/widower group is too young for me. The organizer suggested I try a new mtg next week. I will give it a chance. I know my isolating is not good for me so I will make myself go.

You all tell me it gets better so I'm plugging on but all I really want to do is sleep. Now that the puzzle is complete, I have nothing to anticipate, like no purpose. I guess I feel like he doesn't need me anymore even though I know he hasn't for 14 wks.

Does this mean I can't talk to you anymore? I no longer qualify with PSP or CBD. Feel so lost and alone.

Thanks to you all for all your support.

Big Hugs,

Liz