Chammer

Ed1937

In another thread you talked about your business, and that your husband had a problem with alcohol. PLEASE follow this link. https://iv.iiarjournals.org/content/24/2/231  It's past time to have him checked, and the doctor needs to know about the drinking problem.

Chammer

Ed, thank you for this link.  DH is diabetic also and sees his NP who does lab work every 3 months.  I’ve requested Vit B levels for the last 3 draws and both his B12 and B1 levels are within normal limits.  His liver enzymes have also been within normal limits until the past 2 draws and they are only minimally elevated and could be due to fatty liver.  He drinks an average of 16-18 beers at least 5-6 days a week.  NP is aware that he is a “drinker” but maybe not the extent.  She is definitely aware that he is very non compliant in the way he takes his medication.  I put a super B complex supplement in with his meds, so he gets some when he takes it.

I took your advice from another post and reviewed some of Tam Cummings YouTube videos about staging / diagnosis and based on her suggestion to eliminate the causes for cognitive/dementia changes that it can’t be, I feel like his cognitive changes are from mixed sources - he has vascular changes (had a cardiac stent placed in 2019), alcohol, possibly some TBI (he played high school hockey, football and soccer), and maybe Alzheimer’s (his mom passed away with AD in 2016).  He saw a neurologist in 2018 for muscle fasciculation issues that began after a flu like illness (his symptoms were very ALS like but didn’t progress so that was ruled out).  Neurologist felt like it was restless leg syndrome and prescribed gabapentin.  DH refused to take the gabapentin because it made his mom woozy and wobbly and has since refused to see a neurologist.  Barring a catastrophic event, I doubt we will have an opportunity to make an actual diagnosis at this point. As I mentioned, in 2018, we saw multiple physicians for his post flu changes and he snarls every time he has to see a doctor now (I am fortunate that he likes his endocrine NP).

I think he is mostly still in an MCI stage but he does have a couple of occasional issues that are stage 4 -5ish per Tam Cummings staging criteria.  

So,,, here we are…

harshedbuzz

Chammer wrote:

Ed, thank you for this link.

Ed's the best.

DH is diabetic also and sees his NP who does lab work every 3 months.  I’ve requested Vit B levels for the last 3 draws and both his B12 and B1 levels are within normal limits.  His liver enzymes have also been within normal limits until the past 2 draws and they are only minimally elevated and could be due to fatty liver.  He drinks an average of 16-18 beers at least 5-6 days a week.  NP is aware that he is a “drinker” but maybe not the extent.  She is definitely aware that he is very non compliant in the way he takes his medication.  I put a super B complex supplement in with his meds, so he gets some when he takes it.

My dad had mixed dementia-- Alzheimer's and an ARD called Wernicke-Korsakoff's. I suspect there was some vascular damage and his one neurologist felt a lot of dad's behaviors were suggestive of FTD-behavior variant. (The impulsivity of buying a restaurant with no hospitality experience could be a symptom, btw-- my dad almost did this once, too) When dad was initially diagnosed in the midst of a psychotic episode, his B1 came back at the lower end of "normal". He was the rare alcoholic who ate really well and he was one of those people who believed in OTC vitamins as having almost magical powers. But his PET scan showed the characteristic glucose uptake that indicated WKS. FWIW, I recently learned my dad's nephew died from this. I suspect it was the form of dementia my sister developed in the last months before she died from AIDS. Not all people who drink heavily will develop WKS.

Dad was treated with IV Thiamine in the hospital. The doctor explained that the oral route is not effective with continued alcohol use as the body can't absorb it. Dad's confusion and memory improved after abstinence and the IV treatment which was amazing. When he came home, he started to drink again and he progressed pretty rapidly. 

In your shoes, I would let the NP know how much he drinks. A single 12-oz. beer is typically equal to a serving of alcohol (a little less if it's a super light version, more for some craft styles). 

DH refused to take the gabapentin because it made his mom woozy and wobbly and has since refused to see a neurologist.  

I am not surprised. Gabapentin and alcohol would be a terrible combination.

I think he is mostly still in an MCI stage but he does have a couple of occasional issues that are stage 4 -5ish per Tam Cummings staging criteria.  

The rule of thumb is that a PWD is considered to be in the last stage for which they have any symptoms. 

FWIW, you don't mention any of the specific symptoms behaviors that are indicative of possible WKS-

Often there is a psychotic episode ahead of the memory loss.

WKS really impacts short term memory the most which can make learning an issue. Their other memory can be spotty, so there's a tendency to recall events with confusion about the details. Dad often ascribed transgressions committed by my sister to me-- it felt as though he was rewriting history which turned out to be confabulation on his part. 

Often, they can't regulate temperature well. Dad was always cold. Like set the heat for 85F in coastal MD in July. 

WKS can cause eye and vision issues as well as a very unsteady gait even when sober.

It also impacts spatial reasoning early on. Dad was an accomplished home remodeler and was very focused on remodeling spaces around him without being able to parse space or the laws of physics and gravity. He once asked me to park their 3 cars in the one-bay garage. When I said they wouldn't fit, he insisted he could do it and described stacking them. 

Here's a piece that could be useful to read.

Korsakoff Syndrome: Clinical Aspects, Psychology and Treatment | Alcohol and Alcoholism | Oxford Academic (oup.com)

HB

Chammer

HB - Thank you for your thoughtful reply and the article.  

Changes that I notice most in DH are:

1.  DH was always pretty magical with numbers especially anything to do with construction - he could look at a big job and do most of the "estimate" in his head.  In 2018, he told me "I used to be good with numbers but not anymore" and now he will look like he is really intent on what is being discussed whether an estimate or job report and then either gets mad because it's "fuzzy numbers" or we are going to do what we want any way and blows off any further discussion.  Talking to him now about numbers is a lesson in frustration - he insists on knowing but gets angry because he doesn't understand and blames it on the other person.

2.  his short term memory isn't awful (he definitely remembers anything he is supposed to be mad about lol) but it is bad enough that other people recognize it - 'oh I know better than to ask him for this or that - hahahaha - I should have come to you first"

3.  The running joke at work was all his "whatz its" "thing a ma jigs" " you know, that ... that ... over there ... on the thing." and he has a nickname for everyone so some of his language can be glossed over as "that's just DH" but now he has started word substitution - I just started writing them down - the last one was when he was talking about someone who graduated with one of our sons "I think he graduated the same age as J, no he graduated the same age as Z" instead of year.  And its not like he has forgotten the word - he just uses another word in its place.     

4.  Over the last 2 years he does what I call the "old person" walk (he is 59 so much too young for this) - a sort of side to side pelvic sway of walking - uses a cane for support and balance on many occasions and has fallen once when he was drunk and once when he didn't see a short curb.  He has neuropathy in his feet, legs and hands and has a bulging lumbar disc which causes back, hip and leg pain so that does contribute to his walking pattern. 

5.  The biggest issue is the intensification of his already challenging personality.  His behavior with family is frequently intolerable.  He can be super nice and kind to "others" in fact I frequently get comments from associates who tell me what a wonderful guy he is and so helpful and kind and wow aren't you lucky to have him?    

I know alcohol damages the frontal lobes of the brain so his personality on steroid is not surprising - just incredibly hard to deal with especially since I am the primary target for lots of nasties. 

I'm really just trying to get to the next stage of whatever this all is with enough money, dignity, and love for DH intact to finish it all well.  And I'm beginning to understand why 3 out of 10 caregivers don't survive their care-ee.  

(sorry - this was maybe way too long and TMI!)

Chammer

At DH’s endocrinologist visit last week, NP ordered a head CT scan based on his complaints of dysequilibrium (not dizziness) and needing to work to constantly re-focus when reading.  

He sees a retinal specialist for diabetic retinopathy who says it is stable. This is the reason for the CT scan.  It is a start, I guess, to see what is going on inside his skull.  DH is already trying to crawfish out of it, but I told him it absolutely will be done because NP says so.