February 21, 2020

Are You At Risk for Developing Dementia? Yes, I Should Know, I Discovered I Have It

Yes, I have dementia which is something I dreaded my whole life because I have seen people go through that cycle and is nothing short of sad and scary. My mom had a stroke a year before she died and her already shortening short memory was obvious. Repeating the same question, not remembering the answer and not have the ability to remember new names. I always thought it was one of those diseases in nature with no cure or even prediction if you are at risk. Since most things are, And I had to deal with my mom temporarily not recognizing me and at times even cursing me for bathing and taking care of her. My hurt was so enormous since I was always close to mom and she to me. 48 hrs could not pass without a phone call when she was traveling, visiting the family.

Four or so years ago I notice that my forgetfulness could not be natural. At the time I was working as a Test Center Administrator with a lot of security and testing information to remember. You were also certified every year with a test. I made it ok originally when I first started but two years into it was stressing me out. I could not understand it. One day this homophobic black girl figured out I was gay, I was out but not a topic of discussion in any of the workplaces. I could have taken legal action but my temper did not allow me to go quietly and even though I did not call her anything racist, they *F you and so forth came streaming out of the mouth. I expected the District manager that worked there to take action. He did not because he said he heard the two of us having a verbal altercation. That was a good time to say "Adios Amigos."

To make this story short because the idea behind is to instill in you and if you are lucky to live with someone or are close to your family, a plan of action in case this awful disease attacks and things go fasts. There is Dementia and there is Alzheimer's, Alzheimer's tends to be family-related. Dementia not necessarily. All you need is some brain transmitter to get damaged due to old age, accident or just nature. Dementia tends to go slower and it starts in those individuals with short term memory. My long term memory is excellent. If something becomes a long term memory, meaning that it was very important when it happened I will remember that. Faces I don't easily forget but new names are a problem. Public speaking can be a problem because from time to time I forget my vocabulary and I am not able to continue the conversation unless reminded where I left off. So you see is not so bad.
I am writing without now purely from memory. I am relaxed now but the problem seems to get worse when I get nervous about something.

I am able to speed read to find the stories I'm looking for. I can see with searches how much attention is getting since I'm looking for the important stuff that the media is not concentrating at the time. Current and affecting many of us and if I'm lucky something that makes people take a double look. I used to feel good when I published stories that didn't appear for 24-48 hours but It was not what I was looking for. Sometimes now I will sit on a story to see how much coverage it gets. If it's being covered unless I see a different angle it will not get published. These happen with a defective brain, so if you are in my shoes or become one of the people whose brain begins to fail at any age, there is stuff you can do and I don't mean crayons and numbered flowers. Ronald Reagan had it very advanced but he was able to fool most people until he was done with his presidency. Feel free to comment or ask about this or email for more privacy. I just came out with it so very few will give you the same amount of privacy. privacy. The worse thing I've done publishing this blog is to let a story get published that was supposed to stay in draft so it could be checked proof. I hope I have been forgiven for that but I do go back and edit the mistakes.

Now let me share with you a new article that just came out today in The New York Times written by 

 My mom newly arrived in New York City to a new life. She learns as much English as she could and went to work. She never worked in her life. She was just a housewife to my dad and he kept her busy having kids, (12); After I was born, being the last one, convinced my mom to never sleep with him again (she knew he was unfaithful). When the opportunity came, she grabbed me and three adopted kids and a homeless girl and gave us new lives, if we wanted it. Her older kids had not done well in NYC., Particularly the three males. Losers the three of them. The girls were different. At least I was lucky I was just a kid and everybody else had grown, was married and with heir own lives, so my mom and I had the support of my sisters, not the brothers, they were the opposite. (Do you notice the plastic on the furniture? Whoever came with that stupid idea? I was so happy when one day my mom just took those things off and now when I sit my butt was not wet perspiring). The kids are grandkids of mom, my niece Anabel and nephew Eduardito.

Do I know I’m at risk of developing dementia? You bet.

My father died of Alzheimer’s disease at age 72; my sister was felled by frontotemporal dementia at 58.

And that’s not all: Two maternal uncles had Alzheimer’s, and my maternal grandfather may have had vascular dementia. (In his generation, it was called senility.)

So what happens when I misplace a pair of eyeglasses or can’t remember the name of a movie I saw a week ago? “Now comes my turn with dementia,” I think.

Then I talk myself down from that emotional cliff.

Am I alone in this? Hardly. Many people, like me, who’ve watched this cruel illness destroy a family member, dread the prospect that they, too, might become demented. The lack of a cure or effective treatments only adds to the anxiety. It seems a common refrain, the news that another treatment to stop Alzheimer’s has failed. 

How do we cope as we face our fears and peer into our future?

Andrea Kline, whose mother, as well as her aunt and uncle, had Alzheimer’s disease, just turned 71 and lives in Boynton Beach, Fla. She’s a retired registered nurse who teaches yoga to seniors at community centers and assisted-living facilities.

“I worry about dementia incessantly: Every little thing that goes wrong, I’m convinced it’s the beginning,” she told me.

Because Ms. Kline has had multiple family members with Alzheimer’s, she’s more likely to have a genetic vulnerability than someone with a single occurrence in their family. But that doesn’t mean this condition lies in her future. Risk is just that: It’s not a guarantee.

The age of onset is also important. People with close relatives struck by dementia early — before age 65 — are more likely to be susceptible genetically.

Ms. Kline was the primary caregiver for her mother, Charlotte Kline, who received an Alzheimer’s diagnosis in 1999 and passed away in 2007 at age 80. “I try to eat very healthily. I exercise. I have an advance directive, and I’ve discussed what I want” in the way of care “with my son,” she said.

“Lately, I’ve been thinking I should probably get a test for APOE4,” the gene variant, or allele, that can raise the risk of developing Alzheimer’s, “although I’m not really sure if it would help,” she added. “Maybe it would add some intensity to my planning for the future.”

I spoke to half a dozen experts, and none was in favor of genetic testing, except in unusual circumstances.

“Having the APOE4 allele does not mean you’ll get Alzheimer’s disease. Plenty of people with Alzheimer’s don’t have the allele,” said Mark Mapstone, a professor of neurology at the University of California, Irvine. “And conversely, plenty of people with the allele never develop Alzheimer’s.”

Tamar Gefen, an assistant professor of psychiatry and behavioral sciences at Northwestern University’s Feinberg School of Medicine, strongly suggests having an in-depth discussion with a genetic counselor if you’re considering a test.

“Before you say ‘I have to know,’ really understand what you’re dealing with, how your life might be affected, and what these tests can and cannot tell you,” she advised.

Karen Larsen, 55, is a social worker in the Boston area. Her father, George Larsen, was diagnosed with vascular dementia and Alzheimer’s at age 84 and died within a year in 2014.

Ms. Larsen is firm: She doesn’t want to investigate her risk of having memory or thinking problems.

“I’ve already planned for the future. I have a health care proxy and a living will and long-term care insurance. I’ve assigned powers of attorney, and I’ve saved my money,” she said. “Eating a healthy diet, getting exercise, remaining socially engaged — I already do all that, and I plan to as long as I can.”

“What would I do if I learned some negative from a test — sit around and worry?” Ms. Larsen said.

Currently, the gold standard in cognitive testing consists of a comprehensive neuropsychological exam. Among the domains examined over three to four hours: memory, attention, language, intellectual functioning, problem-solving, visual-spatial orientation, perception and more.

Brain scans are another diagnostic tool. CT and M.R.I. scans can show whether parts of the brain have structural abnormalities or aren’t functioning optimally. PET scans (not covered by Medicare) can demonstrate the buildup of amyloid proteins — a marker of Alzheimer’s. Also, spinal taps can show whether amyloid and tau proteins are present in cerebrospinal fluid.

A note of caution: While amyloid and tau proteins in the brain are a signature characteristic of Alzheimer’s, not all people with these proteins develop cognitive impairment.

Several experts recommend that people concerned about their Alzheimer’s risk get a baseline set of neuropsychological tests, followed by repeat tests if and when they start experiencing worrisome symptoms.

“When it comes to thinking and memory, everyone is different,” said Frederick Schmitt, a neurology professor at the University of Kentucky. Having baseline results is “very helpful” and “allows us to more carefully measure whether, in fact, significant changes have occurred” over time, he said.

ImageNora Super, left, holds her nieces, with father Bill Super, center, and aunt Trudy Super.
Nora Super, left, holds her nieces, with father Bill Super, center, and aunt Trudy Super.
Nora Super, senior director of the Milken Institute Center for the Future of Aging, watched her father, Bill Super, and all three of his siblings succumb to Alzheimer’s disease over the course of several years — falling, she said, “like a row of dominoes.”

One of her sisters was tested for the APOE4 genetic variant; results were negative. This is no guarantee of a dementia-free future, however, since hundreds of genes are implicated in Alzheimer’s, Lewy body dementia, frontotemporal dementia, and vascular dementia.

Rather than get genetic or neuropsychological tests, Ms. Super has focused on learning as much as she can about how to protect her brain. At the top of the list: managing her depression as well as stress. Both have been linked to dementia.

Also, Ms. Super exercises routinely and eats what is known as a MIND-style diet, rich in vegetables, berries, whole grains, nuts, fish and beans. She is learning French (a form of cognitive stimulation), meditates regularly and is socially and intellectually active.

According to a growing body of research, physical inactivity, hearing loss, depression, obesity, hypertension, smoking, social isolation, diabetes, and low education levels raise the risk of dementia. All of these factors are modifiable.

What if Ms. Super started having memory problems? “I fear I would get really depressed,” she admitted. “Alzheimer’s is such a horrible disease: To see what people you love go through, especially in the early stages, when they’re aware of what’s happening but can’t do anything about it, is excruciating. I’m not sure I want to go through that.”

Dr. Gefen of Northwestern said she tells patients that if cognitive testing “is something that’s going to stress you out, then don’t do it.”

Nigel Smith, 49, had a change of heart after caring for his mother, Nancy Smith, 81, who’s in hospice care in the Boston area with Alzheimer’s. When he brought his mother in for a neuropsychological exam in early 2017 and she received a diagnosis of moderate Alzheimer’s, she was furious. At that point, his mother was still living in the family’s large home in Brookline, Mass., which she refused to leave.
Eventually, after his mother ended up in a hospital, Mr. Smith was given legal authority over her affairs, and he moved her to a memory care unit.

“Now, she’s deteriorated to the point where she has about 5 percent of her previous verbal skills,” Mr. Smith said. “She smiles but she doesn’t recognize me.”

Does he want to know if something like this might lie in his future?

A couple of years ago, Mr. Smith said he was too afraid of Alzheimer’s to contemplate this question. Now he’s determined to know as much as possible, “not so much because I’m curious, but so I can help prepare myself and my family. I see the burden of what I’m doing for my mother, and I want to do everything I can to ease that burden for them.”

Kim Hall, 54, of Plymouth, Minn., feels a similar need for a plan. Her mother, Kathleen Peterson, 89, a registered nurse for over 50 years, was diagnosed with vascular dementia five years ago. Today, she resides in assisted living and doesn’t recognize most of her large family, including dozens of nieces and nephews who grew up with Ms. Hall.

Ms. Hall knows her mother had medical issues that may have harmed her brain: a traumatic brain injury as a young adult, uncontrolled high blood pressure for many years, several operations with general anesthesia and an addiction to prescription painkillers. “I don’t share these, and that may work in my favor,” she said.

Still, Ms. Hall is concerned. “I guess I want to know if I’m at risk for dementia and if there is anything I can do to slow it down,” she said. “I don’t want what happened to my mother to happen to me.” Probably, she speculated, she’ll arrange to take a neuropsychological exam at some point.
Several years ago, when I was grieving my sister’s death from frontotemporal dementia, my doctor suggested that a baseline exam of this sort might be a good idea.

I knew then I wouldn’t take him up on the offer. If and when my time with dementia comes, I’ll have to deal with it. Until then, I’d rather not know.

Kaiser Health News (KHN) is a nonprofit news service covering health issues. It is an editorially independent program of the Kaiser Family Foundation that is not affiliated with Kaiser Permanente.

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