Where to Begin

Josie in Podunk

Dx was 2 years ago come December.  I have lurked on this board for a year of it wondering when I might put my toes in the water, so to speak.  After reading a few of the most recent threads...today is that day.

It was not an unexpected DX and the Dr knew it as well...we had been talking for months, he and I, about my Handyman’s fading mental status.  (Handyman is my hubby’s nickname as that was once his trade.  Brilliant designer of kitchens, bathrooms, or what ever his brain could conjure...one of the many things I miss about his creative mind.)

4 years previous he had ended up in ER due to uncontrolled blood pressure.  One top of the mega dose of meds to lower it, he was given Phenergan for nausea.  He had a psychotic reaction to it that the nurse tutted off as “normal in 60% of our patients.”  What?  When questioned why give it then, her replay was a gruff...”it’s all we have...we ran out of the other last month.”  And, I had a major WTH moment right then and there.  At any rate, Phenergan is not the cause.  New Doc says likely an ischemia, but they never bothered to test for one, so there’s that.

Fast forward to the day we began the DX process and waited for the results.  The “undetermined” part came from nothing showing up on any of the imagings...CT, MRI, PET... to indicate NHP or other signs of loss of brain mass.  the Mild to Moderate came from mental tests that showed definite loss of mental capacity....numbers came easy...words  and executive functions...not so much.  And, he is completely unaware of his diagnosis even having been there and through repeated revisits with the Doc.

We did a bit over a year of Aricept before deciding to wean him off it.  He seems to do slightly better without it.  He fluctuates between good, very good, awful, really awful, and not so bad days.  Each day is a new beginning.  I can usually tell by the way he greets me what kind of day we will have.

We are both 70, retired, both previously widowed, have a large multicultural blended family, 7 grands, 4 lively young GreatGrands, 2 sassy dogs, and a lovely 21 foot fiberglass trailer we named Mis~Adventure.  Previous years had us traveling the US and Canada for months at a time.  Covid, my 91 year old mother’s terminal illness, and personal health issues have kept us grounded for almost 2 years.  We are slowly getting that back.

That’s my story.  And, here we are.

Thank you.

M1

Welcome to the forum....I heard a story this week about the origin of podunk...but that's bye the bye. Sorry for your need to be here.

60 falcon

Hi and welcome. I'm glad you got your "toes in the water", but sorry you and your Handyman are having to go through this.  There's lots of experience here but you already know that.

Iris L.

LostinPodunk wrote:

  And, he is completely unaware of his diagnosis even having been there and through repeated revisits with the Doc.

 Welcome Lost.  Do you know about anosognosia?

Iris L.

Josie in Podunk

To Iris...thanks to this board I do.  His doc also said it is not unusual.  And, I actually find a small comfort in the fact that he is not aware.  For him life is life each day and he worries not about the things that are troublesome to me.  I have, at last, come to an ok place with that.

jfkoc

Hi.....welcome from me too.

I wish I could tell you that you will not have another WTH moment but that would be a huge lie. 

I agree that the "not being aware" is a mixed blessing. My husband di not have a clue and truly his diagnoses was not a subject here. 

One thing. Please be certain thorough lab work was done. You do not want to overlook a cause easily treated....J

Josie in Podunk

Thank you, J.

Actually, first thing Doc did was check for UTI and a number of other things he said would help him make a diagnosis if there were markers for it.  He is an excellent GP who is one of those who stays up to date on advances that may affect or be of help to his patients.  We feel very fortunate to have him as the captain of our team.  He treats us as partners and expects us to do our due diligence as well.  It is a good fit.