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submitted 11 months ago* (last edited 11 months ago) by 108beads@lemm.ee to c/neurodegdissupport@lemmy.world

TLDR: This list does not automatically mean someone has dementia—other causes may include drugs, stress, mental illness, or other medical conditions. Seek medical help before jumping to conclusions.

  1. Apathy: nothing is interesting.
  2. Affective dysregulation: sad, anxious, crabby.
  3. Lack of impulse control: frustrated, angry, irrationally stubborn, obsessive.
  4. Social inappropriateness: shockingly uninhibited or rude in words, deeds.
  5. Abnormal perceptions or thoughts: suspicious, hearing or seeing things that aren’t there.

I wish I’d had this article 10 years ago. 20/20 hindsight, my partner in her early 50s went through years of prodromal (beginning signs of) Alzheimer’s before receiving a diagnosis at age 61. The list is scary-accurate.

2

A very beautifully moving, articulate first-person piece by Greg O'Brien, a journalist with Alzheimer's.

I cannot give you a TLDR, because this piece offers the texture, the experience, of what it's like to live with Alzheimer's. He says, "when the brain fails: write and speak from the heart, the place of the soul."

4
submitted 11 months ago* (last edited 11 months ago) by 108beads@lemm.ee to c/neurodegdissupport@lemmy.world

TLDR: Some studies on what causes Alzheimer’s disease are examining the link between the early presence of one of the hallmark chemical brain chemicals (plaques—or clumped buildup—of the protein beta-amyloid) and later development of the disease.

People 18 to 65 who experience high stress, anxiety and depression seem to have greater amounts of this marker protein, and statistically greater risk of developing Alzheimer’s in later years.

Does untreated mental illness tend to cause higher rates of Alzheimer’s? Does impending Alzheimer’s (accompanied by increased beta-amyloid) cause mental health issues? Can early intervention lessen the risk of developing Alzheimer's later? Is the connection mere coincidence?

The cause-and-effect connection is still unclear. (Caveat: No, if you’re depressed, this does not mean you’re headed for dementia-land.)

I can attest to my own experience with my partner, who was officially diagnosed with early-onset Alzheimer’s at age 61. She had about a decade’s worth of whack-a-doodle mental health issues prior to the diagnosis. None of the conventional therapies (drugs, counseling) seemed to work.

We know she had a hereditary predisposition (her father and 2 aunts had some form of dementia). We know she had a childhood that caused anxiety and depression. Perhaps it was a snowball effect—the biochemistry of mental health issues poking and prodding the genetic component into action. Or perhaps the mental health and Alzheimer's symptoms merely overlapped.

Some further reading on current research into links among beta-amyloid, mental illness and Alzheimer’s:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8534102/

https://pubmed.ncbi.nlm.nih.gov/25629787/

https://pubmed.ncbi.nlm.nih.gov/34877794/

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submitted 11 months ago by 108beads@lemm.ee to c/mentalhealth@lemmy.world

There’s a test for that: the Holmes and Rahe Stress Scale. You can look up that term online for more information. I’ve linked to one source that has a decent, short explanation, and the complete scale itself. Other sites can offer more in-depth perspective.

You may need to adjust some of the items for your specific circumstances. Note that the scale indicates that even “good” stuff in our lives (as well as, duh, “bad” stuff) can contribute to overall feelings of being off-kilter, out of it, not quite firing on all cylinders.

4

This article concerns one of the part-owners (19% share) of the skilled nursing facility my partner with Alzheimer's is in. His name is Ephram Lahasky. The place is Comprehensive Rehabilitation and Nursing Center at Williamsville, NY. (I call it the Roach Motel.)

The article notes that he owns a similarly-named nursing home conglomerate in western Pennsylvania. That conglomerate is trying to sell off properties.

In a nutshell, the conglomerate has cheated workers, patients and Medicare/Medicaid. It's trying to sell off properties before a judgment is rendered in the lawsuits, so it won't be liable. These are allegations only, not established fact—but yeah, where there's smoke…

Beware placing anyone in a nursing home where this guy is among the owners. Many nursing homes are a shady exercises in profiteering.

13

“Why Neurologists Are Calling Quest Rapid Alzheimer’s Test ‘an Absolute Catastrophe’”

TLDR by a real person:

Quest Diagnostics has released its Quest AD-Detect™ blood test for $400.

Problems:

  1. The test has a high rate of false positives—29% false positives.

  2. Tests are easy to misinterpret. They only tell you if you MIGHT get Alzheimer’s… with a 29% false positive rate.

  3. The test looks for beta-amyloid proteins, one hallmark of Alzheimer’s. But the buildup of these proteins hasn’t been studied in a large enough cross-section of the population to lead to any conclusions.

  4. Symptoms that look a lot like Alzheimer’s can be caused by a wide range of other things. If you misinterpret the test as meaning you have Alzheimer’s, you could miss some other serious conditions.

3

The Dutch “dementia village,” De Hogeweyk, discussed in a paper delivered at the annual meeting of the Society of Architectural Historians:

https://www.e-flux.com/architecture/treatment/410336/deception-and-design-the-rise-of-the-dementia-village/

An Al Jazeera video on a care home in the northern Thai city of Chiang Mai:

https://www.aljazeera.com/program/101-east/2020/5/1/thailands-last-resort/

[-] 108beads@lemm.ee 12 points 1 year ago* (last edited 1 year ago)

"Cis lesbian" here. I guess. It sounds weird to say, even though "cis" has been around for some 20 years. I came out 40+ years ago. It wasn't a thing when I came out, let alone trans, enbie, etc.

I get SO mad when I hear about any people hating on anyone for their sexuality or gender identity. Have we learned nothing from closets, AIDs, the Stonewall Rebellion, conversion therapy, witch hunts, mass shootings? WE were the Martians, the aliens, to be exterminated or at best hidden 40 years ago. I hear that feeling loud and clear, and I do not forget. Apparently, the haters have repressed our history.

I love you. Just as you are. And I will be first in line to point out the utter hypocrisy of any group with a history like ours that so much as raises an eyebrow at you.

None of us is free unless all of us are free. Anyone who says otherwise is deluded into thinking that they are safe, now that the line has shifted and "gay" is tolerated, if not completely accepted. We all need each other. Now, more than ever.

Hold your head up, brother. I got your back.

41

I don’t want to claim that meditation is the answer to every mental health problem. But it’s helped me, and I sometimes recommend trying it, particularly mindfulness. (And you can do mindfulness seated and at rest, or walking, or any number of routine activities—just not driving, please!).

I’ve heard a number of people say “But I just can’t still my thoughts! My mind is racing, and I give up feeling more defeated than ever!”

Mindfulness is not about forcing your mind to stop thinking. Rather, it’s about becoming aware of what you’re thinking… and then letting the thought go.

I’ve linked an article I found recently that explains it really well. TLDR (though it’s worth reading in full): A Tibetan Buddhist monk, chosen as the reincarnation of a revered predecessor, absolutely loathed being a monk as a teenager. He was angry, snarly, irritated, and a great vexation to his teachers. Angry thoughts constantly interrupted his meditation practice (and everyone around him).

One teacher gave him some advice: when you meditate, don’t be like a dog; be like a lion.


“When you throw a stone at a dog, what does he do?” he asked.

“The dog chases the stone,” I replied.

He said that was exactly what I was doing, acting like a dog—chasing each thought that came at me…

“When you throw a stone at a lion,” he continued, “the lion doesn’t care about the stone at all. Instead, it immediately turns to see who is throwing the stone. Now think about it: if someone is throwing stones at a lion, what happens next when the lion turns to look?”

“The person throwing the stone either runs away or gets eaten,” I said.

“Right you are,” said my teacher. “Either way, no more stones!… Instead of chasing the anger, grabbing it, and holding on, just be aware. Just be very gently aware of the anger instead of getting involved. Don’t reject it, but don’t dwell on it either. Just turn your attention to look gently at the thought. At that moment of turning inward to just observe, the thought will dissolve. At that moment, just exhale and rest.”

[-] 108beads@lemm.ee 7 points 1 year ago

Saw your previous post in this community.. I hear you. I've been learning and practicing (by no means yet mastering) being gentle with myself, setting small goals and appreciating small achievements. Like, if you can't get up and run around the block, can you get up, take a shower, get dressed... and then go back to bed? Sometimes doing that one step today can allow you to do the next thing, tomorrow.

2
Aphasia (www.beingpatient.com)

TLDR (by a real person!):

Aphasia is the inability to put one’s thoughts into the right words—you know what you want to say, but brain damage (traumatic brain injury, tumors, dementia, etc.) derail conversations. It can be isolating and maddeningly frustrating.

How to talk to someone with aphasia

  1. Acknowledge capacity. People with aphasia remain smart, capable—but there’s a short-circuit in expressing thoughts.

  2. Partner up. It takes two to talk. With a few strategies, you can ease the way for satifying conversations. Keys: • Speak normally—tone, volume. • Acknowledge stumbling blocks with respect, rather than ignoring them. • Write down (or repeat) key words to keep chat on track. • Draw, or use gestures; point; use more body language. • Use yes/no questions to confirm understanding. • Sum up main points at intervals.

  3. Respect the human right to communicate. Written or spoken language is a hardwired need.

  4. Ensure accessibility. Make sure speed, loudness, complexity of information (etc.) allow for comprehension, participation.

  5. Include people in conversations and events. Don’t leave people out because you assume they might feel uncomfortable. Offer choices and they will tell you.

[-] 108beads@lemm.ee 44 points 1 year ago

From my grandmother: "Essen! Essen!" (Eat! Eat!) Followed quickly by "You need to lose weight! You're getting fat!"

[-] 108beads@lemm.ee 7 points 1 year ago* (last edited 1 year ago)

There's a saying in the caregiving community, those of us keeping loved ones with dementia and various disabilities afloat, alive and (hopefully) thriving.

Don't set yourself on fire to keep your loved one warm.

Meaning, if you don't take care of yourself, you cannot help others. You could set yourself on fire, but the flames go out quickly, and then you're a crispy, crunchy mess—and both of you are far worse off than when you started.

Put your own oxygen mask on first, before trying to help others.

And… sometimes that means saying "no." Which is hard, but necessary.

[-] 108beads@lemm.ee 13 points 1 year ago* (last edited 1 year ago)

Retired college professor here. I can't address everything you've written, although my heart goes out to you.

I did want to point out that you say you've worked with college mental health counsellors and found little help.

Please know that college counsellors are not set up to address long-term, deep issues. They are very effective working with exam anxiety, roommate spats, grief and coming-of-age emotions. However, as powerful as many of these may feel to the people experiencing them, they are often fairly short-term issues when addressed well and quickly.

In other words, I'm suggesting that you see your experiences with college counsellors as being like a visit to a corner convenience store. You can get a soda, chips, maybe a hot dog. A good place for such items fast, a good stop-gap for you.

But for more substantial fare that will last you a while and keep you healthy, you'll want to visit a large supermarket with more options. A long-term therapy commitment is designed for ongoing health and nourishment, and can offer you deeper resources.

1
ALS and mislocated proteins (www.news-medical.net)

"Researchers at the Francis Crick Institute and UCL have shown that hundreds of proteins and mRNA molecules are found in the wrong place in nerve cells affected by Motor Neuron Disease (MND), also known as Amyotrophic Lateral Sclerosis (ALS).…

[N]ew research published today in Neuron shows that the problem is much broader. This 'mislocalization' affects many more proteins than first thought, especially those involved in RNA binding. The mislocalization extends to mRNAs too, molecules that deliver instructions to make proteins from the DNA in the nucleus."

[-] 108beads@lemm.ee 18 points 1 year ago

Just about 10 years on Reddit. My visits to Reddit dropped by 99.9%; still do a few check-ins with support communities I've used. Here on Lemmy, actively contributing and minor role as mod in a couple of communities. Building a new home in the stars.

1
1

Dementia / Alzheimer's Medication Class Action

"A $56 Million Class Action Settlement has been settled with pharmaceutical companies that manufacture and market certain Alzheimer's disease medications. The class action lawsuit alleged that pharma companies including Actavis, Merz, Teva, Dr. Reddy's, and Wockhardt conspired intentionally to keep generic versions of Alzheimer's medication off the shelves in order to drive up the cost of Namenda Alzheimer's medication. In the United States, the generic version of Namenda Alzheimer's disease drug is also known as Memantine."

Page contains a link to join the class action suit.

[-] 108beads@lemm.ee 7 points 1 year ago

One door has closed. That is sad, and can be scary. May another door (or doors, plural) open for you to far better and brighter things.

[-] 108beads@lemm.ee 8 points 1 year ago

Language, other than one's native tongue.

[-] 108beads@lemm.ee 9 points 1 year ago

It was a rather discordant experience reading this article after reading OP's other post on LGBTQ+ people and depression. (No shade on OP; both articles provide useful insights, and are worth a read. Thank you!)

The representations of "boys" and "girls" in this article are configured as strongly gender-conforming, cis and hetero in terms of their "typical" responses. That's not a bad thing, but it is very limited.

People who are non-binary, transgender, or even gay/lesbian with some gender non-conforming personality components are likely to present with differing constellations of presenting symptoms, and thus to be overlooked.

[-] 108beads@lemm.ee 11 points 1 year ago* (last edited 1 year ago)

That we've been to the moon and back, and that they can casually toss into their pockets a device with enough "thinking" power to do the necessary math for the task and then some.

And that we still can't make nylon stockings that don't "run," but that nobody cares because we don't wear them anymore.

That, and transgender is normal.

[-] 108beads@lemm.ee 22 points 1 year ago

Yes—and there seem to be more linked articles, compared to linked YouTube posts. I prefer to read, rather than wait through ads and a blah-blah-blah intro explaining why I should want the content about to be revealed by the loquacious host.

Reading is a highy efficient way of transmitting information. It feels like a giant step backward in cultural evolution to force information into an aural format with visual candy-coating as enticement.

[-] 108beads@lemm.ee 11 points 1 year ago

You probably have food banks in your area which would be delighted to get some!

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