Diagnosis (finally)....

DrMichaelSG · November 2023

Hello to all,

Hope everyone is well. My apologies for going "missing" for the past several weeks, but my time has unfortunately been filled with testing, testing..........and more testing.....

During the summer (the summer that I can't remember!), neuropsychological testing showed "severe" impairment in most domains. I'll spare the details (e.g., the various sub-scale values) and provide the summary findings:

1) Visual-spatial and processing skills: "Severely" impaired;

2) Executive functions: "Severely" impaired; and

3) Auditory and visual attention: "Severely" impaired.

A related notation within the summary states: "Simple and complex processing skills and verbal fluency were intact. Attention scores were variable."

Two weeks ago, I saw a cognitive neurologist from a research/ teaching university of a major city, and was given a preliminary dx. of "Lewy Body Dementia with behavioral variant FTD (bvFTD)." There were three underlying pathologies identified; these included "Atypical frontal variant of AD with Lewy Bodies" as well as two other DLB- and FTD-related pathologies (the FTD is consistent with ALS (Lou Gehrig's disease), of which I have had had an atypical variant for ~12 years).

Now having "action tremors" (was not at all familiar with this term until I raised it during my visit to the cognitive neurologist, indicating that my thumbs will periodically shake when under pressure, e.g., pushing down on a pen (my writing is poor now, too), or when walking down steps (my head shakes with each step -- that's weird).

Now, I'm due for a SPECT in the next couple of weeks. We'll see. I do feel that the progression of this disease -- whatever it may be -- is increasing more rapidly (I think my wife does as well). In short, I can't explain it, but I can most certainly "feel" it, I have a real sense of it. Of course, I may be apathetic, but I'm still VERY concerned for my DW (that's the very worst part of this).

Every day is like a "Big Bang" -- a new beginning. For the most part, I no longer seem to be capable of remembering what I did in the very recent past (and thus, I tend to "live in the moment"). That happens to be a blessing as well (for me only -- but not for others, I understand that), as I'm not overly preoccupied with the past or the future -- only with the "now". But the "now" is so complex and hurried right now (for both my DW and I) that I don't mind NOT complicating the "now" with the past or with the future. That's how life is today: It's completely foreign to my past experience. Surreal, like a dream. But that's been true for the past year and one-half. It just is what it is.

That's all for now. Will stay in touch.

Mike

Iris L. · November 2023

Welcome back, Michael. How are you managing all of those diagnoses added to your ALS diagnosis? I have learned to live in the present, it's better this way. Letting go of the past is a work in progress.

Iris

DrMichaelSG · November 2023

Hello Iris,

Hope you are well. Like you, I use the present tense...and I use it a LOT! :)

DrMichaelSG · November 2023

Went for my SPECT brain scan today. Until today, I have never had anxiety because of a machine (MRI, CT-Scan, etc.). But this is today.....and today was different than any day before this one. First, I had my first -- hopefully last -- SPECT scan. Secondly, I experienced an anxiety state (a very bad one) when they put the machine 1/4" from my nose (but that may be normal; after all, this WAS a pretty big nuclear medicine machine that weighs a ton (pun intended)....AND that thing was moving around just 1/4" from my nose....so close that I could feel my breath bouncing back on my nose....[I know: "Ugh! Why would he SAY that???]).

In all seriousness, this degree of anxiety must've come from the Lewy Bodies in my brain, because I have never been so claustrophobic before. And it came out of nowhere...no reason for it whatsoever, as I had no fear....but still, the ANXIETY! Strange experience, and just one more inexplicable and surreal and fleeting oddity (like my visual hallucinations). At least I recognize the surreal. For now anyway. But again, I'm opining.... needlessly. ☺️.... (sorry!).…..

P.S. Re-reading the above, I can understand why my neurologist tacked on "bvFTD"....

P.P.S. But I'll leave it there, because it might inform how some people with Lewy Body Dementia think (?)....🙂

Iris L. · November 2023

Wow, Michael, what an experience! I hope this doesn't give you nightmares and hallucinations! Thankfully, you won't have to repeat it.

So is your neurologist thinking that you have both Dementia with Lewy Bodies and bvFTD?

Iris

Kharli · November 2023

I honestly can’t remember feeling fearful or anxious of much of anything ( could be why I had 8 moderate TBI’s but who’s counting?) until I had a 30 minute MRI on my brain.

But…I took a deep breath & started practicing my meditation breathing exercises & pretty quickly I was doing relatively well.

DrMichaelSG · November 2023

https://alzconnected.org/discussion/comment/188836#Comment_188836

Hello Iris,

Funny you should say that, as I've actually forgotten most of the experience. :)

To answer your question, yes. Actually, earlier this week, I researched the medical journals as it relates to these two clinicial syndromes (not the underlying pathology, but the overarching clinical syndromes -- DLB/ bvFTD). So far, I've found only a couple of journal articles in which this co-morbid DLB/ bvFTD phenomenon was studied. The most relevant is here (I could not find link to a free, full text article - sorry!):

https://pubmed.ncbi.nlm.nih.gov/18797258/

In that study, the sample size was only 6 individuals, the authors' conclusion stating:

"We have identified a novel group of FTD patients with clinical features that overlap with DLB, yet seem to be different from both typical FTD and typical Lewy body disease."

I don't know if the field of cognitive and behavioral neurology still views this combination of clinical syndromes as "novel" (the article is dated -- 2008), but there seems to be little else written on DLB/ bvFTD afterwards.

If anyone happens to be familiar with this and/or with related literature / studies, please let us know! Thank you.

DrMichaelSG · November 2023

https://alzconnected.org/discussion/comment/188841#Comment_188841

Hi Kharli,

I completely understand! Thinking back on this, the physical changes in my brain were likely responsible for what were (for me) uncharacteristic levels of anxiety (the anxiety "waves" recurred at least 3 times during the testing process -- that I can recall).

I'm sure that all of this was physiological, because I've never been an anxious person. But I've now begun to experience anxiety states that come out of nowhere - for no apparent reason and with no apparent cause (in saying this, please know that I'm not in any way diminishing the awful pain that folks who suffer from anxiety disorders experience every day).

I recall being told that the full process would take 33 (?) minutes or so....it felt more like 33 HOURS. ;)

Mike

P.S. It takes me a very long time to write each one of these posts. Thinking and writing are not straightforward anymore. But again...it just is what is.

DrMichaelSG · November 2023

Hello Iris,

I did find a more recent (2019) study related to DLB w/ bvFTD:

https://content.iospress.com/articles/journal-of-alzheimers-disease/jad181298

The conclusion states: "We report the case of a patient presenting, firstly, with probable DLB and, in a second phase, with predominant bvFTD features with stable parkinsonism. Even though some clinical and neuropsychological aspects can co-exist in different neurodegenerative diseases, we find such a significant intersection of clinical features to be fairly atypical. Moreover, what is challenging to define is whether the two clinical phenotypes are somehow lying on a continuum, or if they are two individual entities."

Source: Journal of Alzheimer's Disease, vol. 69, no. 3, pp. 839-847, 2019.

And so, it seems that the co-occurrence of the two syndromes is "fairly atypical." Whatever that means. 🙄

Iris L. · November 2023

Kharli, deep breathing has saved my composure many times, thanks for reminding me!

Michael, I'm glad you have found those articles for future reference. What are your plans for yourself now after these diagnoses?

Iris

DrMichaelSG · November 2023

Hello Iris,

I wish I knew next steps. One issue that needs (both immediate and also continuous) attention is management of others' expectations. Most of the folks who know me well - relatives and friends inclusive - but who don't see me every day have a tendency to think that everything is just fine: "You don't LOOK like someone who has dementia!" (a remark recently made to me by a neuropsychologist). Unfortunately, many people - professionals inclusive) mistakenly assume that they have sufficient working knowledge of the various forms of dementia, even while they have made no effort to learn about them. I imagine that this tendency comes from the increased prevalence of dementia-related disorders, i.e., people are generally familiar with the "label" of dementia, but they don't fully understand the specifics -- which are immensely complex. I've been in HC field all of my career, and I have only now begun to get a sense of how the parts (symptoms) fit together to complete the whole (REM-BD, hallucinations, OSA, etc.).

I do feel as if I am spending far too much of my time and energy educating them on DLB (I have ALS, which further depletes/ exhausts my ATP production). To be very candid, if I were to hazard a guess, I would say that only 2 or 3 in every 100 people will choose to look into DLB for themselves (perhaps I just don't know the right people)! It's not a stretch to say that many assume that they'll be given the Reader's Digest version of the dementias which, to my limited knowledge, probably doesn't exist ("And so, you'll jes' hafta read up on it --- like I had to!").

So that's my immediate goal: Educating those around me (but not to do all of the work for them, either). ;)

ANY advisement re. how I can address this more easily (and appropriately!) with others would be truly welcome and GREATLY appreciated!

Michael

Iris L. · November 2023

Michael, my sincere advice is to educate only those who have a need to know. You will exhaust yourself educating everyone else. The majority of the public, including many or most professionals, have no idea what early stage dementia looks like.

For myself, I came up with the term Dementia Pioneer. This was to enable me to look at dementia in a pro-active, not reactive way. The members here were the first PWDs who were aware and could have some say on how they wanted to be treated for the rest of their lives. You might want to think of yourself as a Pioneer, too.

The signs are so variable and changeable. The Association has a saying, "if you've seen one person with dementia, you've seen one person with dementia." It will take you some time to figure out your own symptoms. Then they may change. How can you keep up with telling a lot of people?

I also found that other people minimized and devalued I what I was experiencing. On the other hand, be aware that there are people who aim to take advantage of a person who is less than fully functional. I have found it better to keep my cognitive diagnosis to myself. Other people did not have my experience, because they said they only found helpful responses when they disclosed that they had dementia.

Learn as much as you can about your new diagnoses. I found it helpful to be proactive and to think about the future. Where did I want to live? I decided to remain in my current home. Everything I need is here, including my doctors and other resources.

Do you have legal and financial preparations? I am still working on these.

I hope you will have a nice Thanksgiving Day.

Iris

DrMichaelSG · November 2023

Hello Iris, thanks so much for your (usual) insightful response. Your comment re. the "need to know" is spot on....the reminder is VERY helpful. I'm grateful. :)

I'm still working through some legal and financial concerns, but I have addressed most (I think). Because I've pretty much known what was happening for quite some time, I've thankfully addressed many of those issues. I'm glad I did as well, because leaving important things unattended to or unresolved makes me really anxious....as I think (?) I have said elsewhere, that's new for me. Thanks again Iris.

Mike

raynii054 · November 2023

Mike, have you looked into sound therapy? Or vibrational therapy?

DrMichaelSG · November 2023

Hi Raynii, actually, I had never heard of either of these therapies. Will most certainly look into this. Thank you very much!

Iris L. · November 2023

Hello raynii, can you tell us more about what you are talking about?

Iris

GWB · December 2023

https://alzconnected.org/discussion/67011/diagnosis-finally

Hello Michael,This the first post I have actually read. I was finally diagnosed 12/20 via a neropsychology test with Dementia and strong possibility of Lewy body. I have issues reading, especially online and small font, but I was able to get the jest of your post. I will be reading on and off I I get used to using this forum. Thank you and have a strong New Year. G

DrMichaelSG · December 2023

Hello GWB,

So sorry for your diagnosis. I also have a VERY difficult time reading - this due to large saccades. In fact, I usually have the sensation that my eyes involuntarily float off-target (away from what I'm focused on/ looking at). My vision has become far worse, and at times, I also have double vision (this mostly when really fatigued). This happens while I'm reading, however, much of the time most everything in my field of vision is cloudy (I've said elsewhere that I feel chronically high...somewhat like the dizziness that you feel after drinking too much alcohol). It seems that saccades behave somewhat (?) like the nystagmus that one gets when intoxicated (police test you for this with a pen if the suspect DUI). I voluntarily surrendered my driver's license for this reason (the saccades, not because I drink too much ...😂). In fact, being in the car is, for me, a disorienting experience. Makes me feel even dizzier than usual. And really nauseated. LBD interferes with most every system I can think of (this might exclude breathing, but who knows? I wouldn't be surprised...e.g. sleep apnea?). What a strange existence. I'm sure you agree. I'm still trying to figure all of this out. Every day -- and night -- is different.

Diagnosis (finally)....

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