Update on brain donation and autopsy

Vitruvius

I posted yesterday about my DW, aged 72, with the rare Semantic Variant of Primary Progressive Aphasia, svPPA, also known by its shorthand Semantic Dementia.  She is still hanging on and I have no idea for how much longer, but hospice advised me to start looking into her final arrangements. 

I have been in contact with the right person at the university medical center and they will do a brain autopsy at no cost to me.  They have no current research on svPPA but would like to keep the brain tissue for possible future research. They are interested in providing another data point confirming that the process of diagnosis based on cognitive and physical testing for this rare dementia yielded the correct diagnosis.

Another benefit that my daughter pointed out was information for future generations. The cause of svPPA is unknown, but it as one document I read puts it, “In the vast majority of individuals, PPA is not genetic”. Thus for my children a confirmation of svPPA means they are no more likely to develop this dementia than any random person and we have no history of any type of dementia in our ancestors. My grandchildren will know, that from our side of the family at least, there is no inheritable genetic basis for developing dementia.

The university noted that the mortuary near my DW’s MCF is one the university has made arrangements with in the past, and so I paid them a visit to begin the process. I never thought of myself as the overly sensitive weepy type, but the tears flowed in buckets on the drive home from the mortuary.

M1

Good to know it worked out vitruvius. Sorry about the tears though.

fmb

It is good that you are putting this plan into action. I empathize with you about crying coming home from the mortuary. I made DH's funeral plans last Tuesday and have been crying a lot this past week. The worst was when the young FedEx driver delivered the package containing the clothes I'd ordered for DH to wear into eternity. The finality of it is really hitting home. ((Hugs))

GothicGremlin

I'm so sorry @Vitruvius I remember my trip back from the mortuary and the cemetery. I was so upset I didn't even tell anyone about it for a couple of days.

Also, fwiw, Peggy also had Primary Progressive Aphasia, the logopenic variant. When she got the diagnosis, the first thing she wanted to do was get a genetic test to see what showed up. Nothing did, so I guess in her case it wasn't genetic.

ButterflyWings

(((Vitruvius))) You are such a wonderful spouse. This is brave and selfless of you. I’m so sorry for all of this, though.

I’m acting like an ostrich right now. Head in the sand on this topic as I don’t even want to think about it. Though I know I must. It is more obvious as the moments go by, that DH’s days are numbered.

CStrope

DH has been given the same diagnosis as your wife @Vitruvius I am really really struggling with life in general lately. I keep saying that I want him not to suffer anymore, but every time something happens and I think I'm going to lose him I'm beyond terrified. I know the day is coming, just not sure how my heart and my head will cope. I'm glad you're able to find a research group that will benefit from this horrible journey you have been on.

Jgirl57

So proud of you Vitruvius!! ((Hugs)) for your tears

Jean loves wildlife

The tears were letting out your grief and pain. So sorry for what you are going through.

Jean loves wildlife