Memory Health: Alzheimer's Support Group

Is there still a stigma attached to dementia? Really?

Is there still a stigma attached to dementia? Really?

Sometimes I think we are so advanced as a people and others, well not so much. Unlike "Alzheimers Disease" or "Parkinsons Disease" where you can put a name to your enemy, and hence fight the good fight, when the general specter of "dementia" is used, it is so ambiguous that you don't know who or what to fight...and are simply left with something to fear. The bogey-man living under your bed or in your mental closet.

I looked at the stories about Malcolm Young and David Cassidy thinking OK they are beloved public figures, maybe their problems with dementia will spur more research into that which is killing many of the readers here. But nope, they just list it as dementia and leave it at that, as if getting more specific into the cause of that dementia would be read as some STD or something. This does no one, and particularly not the one dying from it a service of any kind.

Think about it: saying someone died from dementia is no more accurate or informative than saying someone died of a tumor. But as soon as you ID where that tumor came from, the researchers go to town. Dementia is no different yet most times even when mentioning the cause of dementia in a famous personality, the part of "Alzheimers" is sorta mumbled under the breath, just before declaring with a false sense of authority "DEMENTIA DID IT!"

Sadly, the few like Michael J Fox with his Parkinsons work are the exception; far more almost act like they don't want to know, not really know what did it....I have never understood the head-in-the-sand frame of mind.

Thoughts?

Why is this? Why does this mind-set persist, even in these hopefully more-enlightened times? I really don't get it. Does anyone have any thoughts on this? I have none other than the whining above.....but I do think its time for a more informed public discussion (and private, like within families where the family member with dementia is treated the same as the family person with alcoholism that never gets treated (for example).

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Hi Jeff,

First off, just want to say I enjoy your posts. You are doing a wonderful thing by sharing your perspective, musings, ideas, and issues along the way. I appreciate your frankness and wish our world was more accepting and open to people with dementia.

I joined this group because my dad has vascular dementia. Initially he hide and denied his condition and after a mini intervention finally got into the Dr and started the diagnostic process. He's in a better place about what's going on and has his sense of humor but has always been a quiet guy and doesn't like to talk much about the dementia. I believe it's because of the stigma attached to it. I intend to ask him how he feels about it over the holidays. Honestly, I had not thought of that until your post, so thanks!

Anyways, your post lead me on a google search and I came across a study about this very thing. It's a long one and I just started to give it a skim. Thought you might enjoy taking a look. At the end they have some conclusions and recommendations to help reduce stigma.

alz.org/documents_custom/wo...

As a country we could be doing a lot more to reduce the stigma with aging and dementia. There needs to be a mass movement for acceptance like what happened with AIDS/HIV.

It's trailblazing people like you that share and document their experiences that help to bring this disease out of the shadows. With openness and awareness stigma is reduced and acceptance and understanding will grow.

Grateful for your posts. Wishing you and yours a happy thanksgiving.

Best,

Sue

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Dunno if this helps put things into perspective WRT your dad but perhaps his background/raising contribute to it as well. My mom was raised in such a way that when my own father was dying of what was probably a brain-tumor, my mom kept lying and telling tall tales to explain....well, everything. She just could not admit illness I guess. Everything came to a head when we were at the funeral and everyone realized that she had given everyone there a different story about cause of death...

In my case, though I was raised in Catholic school till 7th grade, I was a serious class clown the whole way, pretty much every nuns' nightmare student. One thing all class clowns have in common is, they pretty much don't give a rip what folks think of them. Thus, the stigma is a non-entity to me.

I will write as long as I am able, though the end is in sight. I have a lot of stuff I have started but not completed because the down-phases have gotten worse/more frequent and I effectively "lose myself". Still, I know what it was like when I first got my diagnosis, hit the web and found exactly nothing about LBD. I wish I had some first-hand info from someone who had it...so since that didn't work out, I am just throwing my experiences out there for someone to find, maybe it helps someone. I hope so...I am always just taken aback by the fact that no one has done this before....or at least they did it in such a way as not to be found.

Actually here is something for you to mentally gnaw on....I got to wondering the other day...I wish I had a disease named after what was actually wrong. Think about it: when disease is known simply by its symptom, its scary. When its known by the dude or dudette that discovered it, that isn't really a whole lot better. In the case of Drs Alzheimer and Lewy (of Lewy Body Disease fame), yeah they found it but thats only a little different than the witness at the accident scene that is yelling "Officer! Officer! I saw the whole thing!" Well good for you but even then, its just a slight more precise symptom. As such, little progress seems to happen WRT research. Get something like cancer or leukemia and that is a target researchers can hit. Curing a symptom cures the disease the same way a cough suppressant cures the common cold. Curing the cause is always the answer, and until the cause of Alzheimers, LBD, et al are known and understood, in other words, as long as we have a disease named after a doctor, we are pretty stuck with cough suppressants until we die. I want a disease upgrade please.

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jeffcobb just got diagnosed with dementia. Still in shock.

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Greetings; it always strikes me as funny the many ways different people react to the same exact news. In your case, shock. In my case, an almost bizarre level of relief. Before the diagnosis, I could not make head nor tails of what was happening to my reality, my mind and my very existence. I spent many nights awake, fearful I was losing my mind. Once I knew, once I could put a name to my enemy, somehow that was far more tolerable, like somehow I was on a more even footing in my battle for reality.

Which is SO WEIRD if you think about it because all I actually got was a confirmation that yes, Jeff, you are losing your mind. I was scared of a possibility yet once confirmed I welcomed that reality. I mean, with a disease like this, who needs drugs?

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jeffcobb i was shocked because it came on much sooner than neurologist told me - My MS would progress to Alzheimer’s probably in my 80s. And I would deal with it then. I thought fatigue and emotions were causing my losss of logical reasoning and ability to “have a linear conversation” (as one neurologist wrote in his assessment-had to look up definition) (next one said I can’t stay focused). Family and friends blamed my behavior on “you’ve been through a lot and all the MS meds that Icwas allergic to” caused the behavior. I knew better but no one would accept my theories. Wasn’t prepared for this much change in my abilities and personality. When I saw the words on paper, it made my lurking thoughts too real, knowing the progression I saw both my parents go. I refuse to believe the doctors dx that there is nothing to slow progression. I am going down fighting thiscwith my boots on! So far, I share the news and I get a silent response—-which is more shocking than the dx on paper! Maybe it does have a stigma. I had to send my daughter a pic of the doctors report and testing cause she said they were “just talking”. So maybe she does think of dementia as a stigma. It’s just another disease! But no one will believe me! That’s what is weird!!Aha! They can’t trust us anymore because we are crazy! We know difference - we just forget, make foolish decisions can’t follow plots — so we live in the moment, right? Just letting Jesus take over and give up my “independent I can do anything” personality. God is with me. The world is crazy, not us😩🤣👹🤣

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Wow. Again it is funny how close things went even though physiologically we are as different than day and night. You came to this via MS; I had nothing specific although a high-pressure job exacerbated things a great deal. But where you felt fatigue and loss of mental focus, I felt the same but blamed the lack of focus on the fatigue and the fatigue on simply getting old and not trying hard enough. So I did the dumb thing and just threw myself onto my sword and worked twice as hard and still wasn't able to make up the mental territory. Dumb, dumb, dumb; I probably made things worse. But hey I would be interested to know something: what was your profession/job/sklil/hobby/whatever before all this? Reason I ask is as I noticed stuff going wrong, because most of what I did for a living was sitting and thinking (designing). As a result, while things overall did seem to be going crazy on me, I knew my own thought-processing well enough to know when specific bits of it were breaking down. I had no clue WHY that was happening but I could absolutely identify different parts of my thinking and focus as each atrophied.

And I also shared your "no one believed me" part too; that almost cost me a job, a marriage and my very sanity. It took a long time to find a doctor that understood enough to ask the right questions. In a way, that was almost the hardest part because I knew something was wrong that I could not prove to anyone, not even myself. The diagnosis changed all that and I moved from a position of defensiveness and more than a little paranoia to one of hopefully reserved determination. I am not so foolish to think I will "beat" this in any tangible way. It is at best a lark of a wish to think anything will have an impact on my demise or mental state. The battles that I have won in that direction are the ones that needed to be. No, I will not beat this but what I can do is make the absolute most of the time I have left and thats something I work on every day.

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Go for it Jeff!

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jeffcobb i was an accountant, a very good one. The day I couldn’t balance my own checkbook, then the next month overdrawed on bank account, I knew my mind was “tangled up” dead cells. But only I knew how efficient I was with numbers since 16 (now 70) and it wasn’t “old age” or stress. I had read enough about demyelination to know it was MS progressing, but my husband and daughter couldn’t or wouldn’t understand that I knew what my brain HAD been and it had changed. In my later years I (through a series of strange events) I worked for 2 lawyers and on some of their cases I would discuss them and have better reasoning to win in court. They quickly changed me to a paralegal and I prepared cases for them. I was very good at logical thinking (on the debate club in school), so when I couldn’t follow the plot of a movie and would need to ask what just happened, family would say just becquite and listen. This problem is getting worse. I made excuses for myself (like maybe it’s just the MS meds), but deep down I knew I was losing my logical abilities. I too blamed it on fatigue because of lack of sleep (delayed sleep disorder was diagnosed), so when the word dementia showed up, I was angry - no more excuses - face the facts and figure out a way to survive. Supplements, essential oils, mindfulness, Whole Foods eating, thinking about writing a book. My husband already gave it a title “Walk in My Shoes “. But, I’m dreaming right??? I “cannot have a linear conversation “ so how could I write a linear chapter? It would be like following the steps of a rabbit! Zig zag, every page! I bet you could follow it! Because you are walking in my shoes! Well, they might wrong size! I had to cancel my membership to Lumosity because last year, my scores were above average, now the chart lines are all going down down down. No speed-reaction mentally for me - blessed if I can just make the right one, if only in slow motion. That’s it- my mind has gone from super high speed to super low speed! Someone Put my brain in very slow motion! And some moments even turns the electricity off and I go into the black hole! Besides, my eyes randomly choose to become blurry - that’s it, we lose control if the electricity of our brains! I pray I never forget Jesus, my Friend

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Hey....didn't catch the name. However what I say next may set off some bells, the ring of familiarity. Admittedly I am going out on a limb here but....accountant....very good one....sharp logical mind, one that set standards for others to follow. This may get me in trouble with some but I don't have the time to diddle around with the facts. Basically, I was a software engineer...and a good one according to those I worked for (Sony, Bally Gaming, etc). Had a good logical mind. Never had formal training so its part of my DNA or whatever. And when things started to break down, I had trouble because I didn't really get the systemic links between the lobes and the capabilities...and so the only way I could explain it was I could no longer do certain things that higher-end engineers could do without effort...but I was reporting it to people (wife, nurses, the wrong doctors) to whom the loss of those skills meant nothing and so nothing was wrong and I "seemed" perfectly fine. The fact that I could no longer accurately schedule projects or I could no longer learn a new programming language in a week or I actually had to work at finding system failures, all of this fell upon deaf ears, and though the loss of those abilities in my mind meant something bigger/more fundamental was broken, I did not have the language or understanding to capitalize on it. So part of the initial disbelief was less stigma and more the loss of a skillset the listener never had in the first place. To give a basic example, one of the key things I worked on for various firms was ways of leveraging swarm computing to advance their business interests. Swarm computing is simply a fancy way of saying many computers working together to solve some common problem. Sony used it as a learning system and Bally used a form of it to figure out all the win/loss odds to get their new games past the gaming commission here in Las Vegas. This is the important part: to design such a system, troubleshoot it when it goes wrong and extend the capabilities when they are needed, you need to be able to have a sort of mental peripheral vision, basically keeping in mind what each of (say) a dozen computers are doing at any given second. Not saying it was easy like breathing but anytime I worked with a team on this, everyone on the team had this basic ability. So when this ability first became faulty and then went away entirely, it was hard ...no make that impossible to explain to anyone.

Hey totally different subject but can I share my little wisdom on the book idea? OK first, I had a very similar idea in the beginning. At first when I read at NIH that LBD is the second most common dementia after Alzheimers, I was eager for any kind of information what LBD was like from the patients' perspecive. I knew I had seen AD books out there so figured there *had* to be at least a few on LBD that was from a POV other than the caregiver or doctor. And there was none to find. Even though I have not heard it that way, I totally get the tangled mental bit and not having a linear conversation. Maybe due to the brain damage, perhaps due to the kind of expressive aphasia I have but I can utter statements and perhaps two sentences strung together and they might sound fine. More than that, forget it, so trying to express anything thats non-trivial is nearly impossible for me at this point.

So the tangled up thing is a problem I too would have, had I chosen to complete the book. However before I made that decision (and I felt there might be a more deserving book within me) I came up with a method that works surprisingly well. Of course, I am/was an engineer so this may seem hideously difficult. As it is, I am trying to put together enough material for another book so had to finish this. Basically I noted that my mind jumps all over the place and if I try to write on a subject my mind simply won't stay on, it becomes 10x harder, perhaps even impossible. Also knowing how my mind worked and the fact that if the thing I need to write about is too hard, there probably is some topic I *can* write about. So (used to be a UNIX hacker) I set up a simple directory on my laptop called "book" and then wrote a simple script that ran like:

$> newchapter <chapter subject>

And a new file would be opened in that directory under the title subjectname.txt in my favorite editor. For example, say one morning I felt like I could write something good on the subject of plant cloning; I would simply open a terminal and type:

$> newchapter cloning

The file book/cloning.txt would be started in my programming editor (EMACS). The strategy is when I have the mental capacity to write on a particular subject I can quickly get a document started before my mental focus on it can fade. In time I had a whole folder full of text files on subjects related to my main topic (gardening for the disabled). The final step will be to gather up those files and put them into some kind of logical order and finally formatting it all for a book and using a free website to convert all this into a proper EPUB ebook file. Finally, I found that Amazon Kindl has a service for new authors where they will advertise/sell your ebook for a relatively small cut of the proceeds. It is my hope for leaving something good behind when I am gone. So far, this system is working.

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Sorry Jeff. I responded to the wrong note. What I wanted to say is that I am so impressed with your plan and attempt about the book. This one is to go for it Jeff!

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jeffcobb That way of writing was an epiphany!! Just writing on whatever you are focused on today and keep it as a file. Next day my mind will be of on a tangent, and I could about that. Some day, I could find order and progression in all the files and let them flow together. MaybeI will get out of this apathy hole an do just that, also.! We all need a passion, a goal, a dream, a vision, a purpose, to keep us on tthe MS battlefield!

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Glad it helps. Its funny but I am actually starting to apply certain tricks I learned in the engineering trade to this situation and some things actually work. The above was a twist on a system I wrote long ago to speed up record processing at an insurance company I think. Anyhow the problem was the processing took too long because they were doing the records in order and (electronically) they were distributed all over all so the mainframe spent more time searching for the records to process than the actual processing. So I wrote something that prioritized processing records that were nearest at any given time and only moving on when the supply of records to process was exhausted. This gave us a 10x speedup. So in this case I adapted the concept to say if you can't write what you need to, write on what you can and get to the need-to stuff later. Basically.

On a slightly larger scale though, I am finding some success with another technique common to design teams. This may be tough to explain but.....here goes:

My problem now and other may have it too is that depending on your damage, sometimes tasks that were almost second-thought before are now nearly complicated to the point of not understanding. Some tasks and concepts are just black boxes to me, mentally when I am in down-phase. However programmers and designers have been dealing with complexity for decades and have developed methodical ways to decompose larger complex problems to smaller and smaller bite-sized pieces, each easier to understand and grasp. Now the one key thing about this is, it just takes apart a complex problem or system and makes it easier to understand. No foreknowledge of it is required and that makes all the difference.

Now (sometimes, when I remember to do it) I can get hit with something I know I should understand, know I could do it in an "up" state, I can make myself pause from trying to take the big conceptual bite and basically nibble away at the problem/task until I can understand every detail I need to. This has really worked and it really helps me. The concept is called Object Oriented Design and Development. Who knew it would actually help me survive the non-digital world too!

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@jeffcobb I must be in an "up moment" because I can comprehend what you are saying to solve the black hole moment. If I can get past the frustration of NOT comprehending maybe I could try this!

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