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Autopsy Findings

My husband passed away in June after a 17 year battle with EOAD. He began showing symptoms in his late 40's and once he was officially diagnosed, volunteered for several clinical trials at USC. Being a part of the research group gave Bill the option to donate his brain for research after death which he chose to do. I just received the final autopsy report. It confirms that Alzheimer's was his primary diagnosis but it also showed Amyloid Angiopathy, as well as Lewy Body in his midbrain. 

This made me think about his progression. A few months before Bill died, his symptoms changed. He began leaning when he sat and had a few falls. He also had what the doctors called a seizure and then continued to have mini seizures the last 10 days before he died.  After the first major seizure, he was unable to swallow and that was what finally took him. Looking at these autopsy results, I'm wondering if he actually had a series of strokes leading up to his death. In hindsight, I can clearly see the physical changes along with the inability to recover from a UTI that led up to his death. Although he had some LB symptoms early on, he never really fit that category until this last year.

After 17 years of thinking it was EOAD, I now know for sure that it was. I just wish that since the doctors can clearly see what it does to the brain, that they could find a way to prevent it from ever happening to begin with.

Comments

  • Doityourselfer
    Doityourselfer Member Posts: 224
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    I'm sorry for your loss.  Take good care of yourself.
  • Quilting brings calm
    Quilting brings calm Member Posts: 2,404
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    I’m sorry for your loss.  I don’t know if the autopsy results helped you or just caused you more pain.  I hope it helped. 

    Could you please go over to the  caregiver forum and comment on Cobalts’  question about seizures and  the effect on dementia progression?  I think she posted it about Tuesday of this week. She was looking for someone who had been through that happening to advise her.  

  • Jeff86
    Jeff86 Member Posts: 684
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    I am sorry for your loss, and hope the autopsy findings confirming the EOAD diagnosis give you closure/resolution on your long, difficult journey.
    My DW has a cerebral amyloid angiopathy (CAA) diagnosis as well as AD.  CAA patients are at increased risk of seizures as well as strokes.

    There are no approved treatments for CAA, and no preventative recommendations.  The standard guidelines are a Mediterranean diet and exercise, just as with AD, with the additions of keeping blood pressure down and avoiding blood thinners that would worsen bleeds, micro and other, in the brain.  It’s discouraging how little progress scientists have been able to make, so far, with these terrible diseases.
  • LadyTexan
    LadyTexan Member Posts: 810
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    I am sorry for your loss. I am glad you were able to get more information about your husband's condition. I am thankful to you and your loved one for participating in research. Research is so important to those that follow our path.

    I am interested in having brain samples sent to a nearby brain bank. DH has stated he is not interested which disappoints me. But I understand it is his decision. I believe the more information the researchers have, the more they can learn about this heartbreaking illness.

  • Joe C.
    Joe C. Member Posts: 944
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    My condolences on the loss of your husband. May you find some peace in the days ahead.
  • Michael Ellenbogen
    Michael Ellenbogen Member Posts: 991
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    I am not surprised by this as over 50 present of the people who die end up having 3 types and 60 percent have 4 types. I could be wrong on the numbers and they are reversed. Just can keep it straight any more.

     

  • Ed1937
    Ed1937 Member Posts: 5,084
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    So sorry for your loss. I hope you are making headway in the healing process.
  • Davegrant
    Davegrant Member Posts: 203
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    I am sorry for your loss and thanks for sharing.
  • Marie58
    Marie58 Member Posts: 382
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    I'm so sorry for your loss. May God grant you peace, comfort, and strength.
  • Joydean
    Joydean Member Posts: 1,497
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    So sorry for your loss. I pray you find peace and hopefully some happiness in time.
  • DJnAZ
    DJnAZ Member Posts: 139
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    Thank you and your husband for your contributions to the research efforts. Hopefully the autopsy information and his participation in clinical trials will aid scientists as they study this insidious disease. And ultimately find a cure. It has been much too long in the scientific research process with few if any actionable results.
  • Buggsroo
    Buggsroo Member Posts: 573
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    I am so sorry for the loss of your husband. 

    The fact that he was subject to autopsy is a very generous thing. Any information that can be gleaned and added to knowledge of the disease is very positive. 

    I wish you peace and calm in the weeks ahead.

Commonly Used Abbreviations


DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
Read more