New Member - Troubled by Memory Loss

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
777
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New Member - Troubled by Memory Loss

Postby 777 » Sun Jun 16, 2019 4:07 pm

Thank you for a great web site! I am a 77 years old e4/e2, and I have been lurking here and reading the startup pages. Today I saw a paper:
https://www.sciencedaily.com/releases/2017/10/171010133917.htm
or more detailed:
https://www.psychiatrist.com/JCP/article/Pages/2017/v78n08/16m11367.aspx
that indicates that glucose hypometabolism in the brain is associated with the subject being unaware of his/her memory loss, but where the problem is obvious to other people. In my case, I am very much aware of my memory shortcomings, but my family say I am no worse than other old people. Am I now in the clear?

NF52
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Re: New Member - Troubled by Memory Loss

Postby NF52 » Sun Jun 16, 2019 5:29 pm

777 wrote:Thank you for a great web site! I am a 77 years old e4/e2, and I have been lurking here and reading the startup pages. Today I saw a paper:
https://www.sciencedaily.com/releases/2017/10/171010133917.htm
or more detailed:
https://www.psychiatrist.com/JCP/article/Pages/2017/v78n08/16m11367.aspx
that indicates that glucose hypometabolism in the brain is associated with the subject being unaware of his/her memory loss, but where the problem is obvious to other people. In my case, I am very much aware of my memory shortcomings, but my family say I am no worse than other old people. Am I now in the clear?
Welcome, 777!
We're glad you found us, and even happier that you decided to post such a fascinating paper. For those who will be intrigued by the title, I've included it here for the article in the Journal of Clinical Psychiatry:
Anosognosia Is an Independent Predictor of Conversion From Mild Cognitive Impairment to Alzheimer’s Disease and Is Associated With Reduced Brain Metabolism
I have a sneaking suspicion that you have a long history as a practitioner in the field of clinical psychiatry (unless you're like me, and you read the articles in a journal for which a relative is an editor!) Simply by noting the question as applied to yourself you have demonstrated a high level of educational attainment, presumed occupational challenge, lifetime cognitive learning and problem-solving, engagement in purposeful and social activities--all characteristics with high predictive value as "protective factors" which increase the brain's resistence to the effects of ApoE 4 or resilience systemically to those effects. Cognitive Reserve in Aging

Having worked with some young people with anosognosia (impaired awareness of one's illness) due to the effects of traumatic brain injury (TBI), I think it is highly unlikely that you have the classic lack of insight seen in that condition. (As an example, a neuropsychologist told me of a patient who insisted he could still be a marathon runner with a hemiplegia. It was only when asked to run down the clinic hallway that he became "aware" that he could not run.) The article seems to indicate that hypometabolism as seen on an FGD PET scan is a more accurate predictor of conversion from Mild Cognitive Impairment (MCI) to Alzheimer's disease (AD) within 5 years than are scores on cognitive assessments. The article notes that
Anosognosia was measured with the composite discrepancy score of the study partner and participants’ scores on the Everyday Cognition scale (ECog)
But it also noted that
ECog-composite scores ≤ −0.75 were 93% sensitive and 15% specific for conversion from MCI to AD.

This wikipedia entry suggests, however, that the ECog test may by itself show many "false positives" who score low while in MCI but do not convert to AD, if I am reading this correctly:
Sensitivity therefore quantifies the avoiding of false negatives and specificity does the same for false positives. For any test, there is usually a trade-off between the measures – for instance, in airport security, since testing of passengers is for potential threats to safety, scanners may be set to trigger alarms on low-risk items like belt buckles and keys (low specificity) in order to increase the probability of identifying dangerous objects and minimize the risk of missing objects that do pose a threat (high sensitivity)... A perfect predictor would be described as 100% sensitive, meaning all sick individuals are correctly identified as sick, and 100% specific, meaning no healthy individuals are incorrectly identified as sick.
[Emphasis added.] https://en.wikipedia.org/wiki/Sensitivity_and_specificity

It may be helpful in clinical trials to use FDG-PET hypometabolism as an independent biomarker to predict 5-year conversion to AD, but in practical terms it doesn't seem to offer much to families whose loved ones have been diagnosed with MCI, which is generally recognized as not always progressing to AD or other dementia diagnosis.

And for you 777, with your lucky ApoE 2/4, I'll offer this quote from a meta-analysis of four large cohorts, which is available at this link:APOE-related risk of mild cognitive impairment and dementia for prevention trials: An analysis of four cohorts: {note: "Lifetime risk" is defined for purposes of this analysis as the risk of diagnosis of MCI or dementia by the age of 85}
The Generation Study elected to disclose the following “lifetime” risks of MCI or dementia to its potential participants: 30%–55% for individuals with APOE-e4/e4; 20%–25% for individuals with APOE-e3/e4 and -e2/e4 (with a note that risk might be lower for those with APOE-e2/e4); and 10%–15% for individuals with APOE-e3/e3, -e3/e2, and -e2/e2 (with a note that risk might be lower for those with APOE-e2/e3 and -e2/e2). These values are consistent with our findings, but use round numbers for intelligibility, and broader ranges to reflect statistical and other sources of uncertainty. The regression models are insufficiently precise for “personalized medicine” incidence estimates based on sex, education, or other factors, but they do allow for qualitative adjustments to overall stratified risk estimates.

We have other members with ApoE 4/4 who are still going strong at 77 and older (and several with ApoE 2/4, although I believe they are younger). We hope you will jump into any conversation, and here's a link to make that easier: How-To guide.

And if you happen to be interested in joining one of those observational studies, or even having some free online memory testing, here's a few more links: End Alz. Now: FInd A Study [Note that # 3 and # 4 are both for the Brain Health Registry of UCSF, apparently an oversight.] Another source is the National Institute of Health's Clinical Trials website,Clinical Trials: Advanced Search which has an advanced search function that can sort by topic, your age, recruiting studies and your location (Country, State, City).

You can also contact a regional university with a Memory Research Center (or Memory Clinic) for comprehensive testing which would be paid for by Medicare in the U.S. That might help you decide if your subjective memory concerns are valid.
As someone 10 years younger who still plans to be reading articles like the one you cited in 10 years, I hope to keep learning from you!
4/4 and still an optimist!

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SamNZ
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Re: New Member - Troubled by Memory Loss

Postby SamNZ » Sun Jun 16, 2019 10:55 pm

777 wrote:Thank you for a great web site! I am a 77 years old e4/e2, and I have been lurking here and reading the startup pages. Today I saw a paper:
https://www.sciencedaily.com/releases/2017/10/171010133917.htm
or more detailed:
https://www.psychiatrist.com/JCP/article/Pages/2017/v78n08/16m11367.aspx
that indicates that glucose hypometabolism in the brain is associated with the subject being unaware of his/her memory loss, but where the problem is obvious to other people. In my case, I am very much aware of my memory shortcomings, but my family say I am no worse than other old people. Am I now in the clear?


Hi 777,
I would just like to extend a warm welcome to you and thank you for adding such a good contribution to our site. It really is people like yourself that mean we all get the benefit of really up to date information in and around the subjects of AD and cognitive decline. I am just checking in your lurkings you have found the Primer which is a real treasure trove of information. As far as I am concerned as far as you being in the clear, it seems to me you have a pretty amazing handle on what is going on for you and in cases like this I think that you really need to trust your gut, you mention you are aware of your shortcomings and NF52 has given you some great suggestions on where to start finding out more. We all look forward to hearing more about how you get on. Kind regards SamNZ
Samantha McBride
Functional Medicine Certified Health Coach

777
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Re: New Member - Troubled by Memory Loss

Postby 777 » Sun May 24, 2020 8:17 am

Thank you, NF52 and Samantha!
I should have thanked you a long time ago! Lame excuse: A short time later, I talked to my doctor and told him about my e4/e2 status. Not to worry, he said. He was e4/e3 himself (in his fifties, I guess) and was not at all worried (so I should not be, either.) So, I was not.
Short version: I may have Dementia with Lewy Bodies. Can I find help here?
Longer version (you may stop reading now):
Fast forward to December 2019. One morning during a visit to my daughter in Virginia, I could not stand on my feet. The whole room was moving around. I had a severe case of vertigo. On to the emergency room, where they did MRI of my head and CT scans of my head, neck, and chest. Nothing found. The vertigo improved a bit, but it is still problematic.
Back home, I saw my PCP, and an ENT doctor. The latter checked out everything in the ears, but could not find the reason, so I went to a neurologist. He ordered two brain scans:
1. NM PET brain metabolic. Results: For several areas of the brain, mildly or moderately “decreased cortical tracer uptake.” Impression: “Abnormal supratentorial cortical tracer distribution. In the appropriate clinical setting consider dementia with Lewy bodies.”
2. Multi hour laboratory EEG. Results: “1 Intermittent Slow, Regional left fronto temporal Impression. This EEG is suggestive of mild cortical dysfunction in the left fronto-temporal regions. No epileptiform discharges seen.”
The neurologist tried his best to “soften the blow”, and prescribed Aricept, first 5 mg, the 10 mg.
So, like everybody on this forum, I want to do what I can to stave this degeneration off. I am still cognitively OK, but with bad memory. The Aricept gives me insomnia and other problems, so when I saw Dr. Bredesen not recommending it, I am now slowly getting off.
I have read Dr. Bredesen’s book and watched some of his videos and am trying to follow his lifestyle recommendations.
My question is: Does the Bredesen protocol work for DLB? Would I benefit from functional medicine?
Thank you.

NF52
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Re: New Member - Troubled by Memory Loss

Postby NF52 » Sun May 24, 2020 11:00 am

777 wrote:Thank you, NF52 and Samantha!
...A short time later, I talked to my doctor and told him about my e4/e2 status....Short version: I may have Dementia with Lewy Bodies. Can I find help here?
...The neurologist tried his best to “soften the blow”, and prescribed Aricept, first 5 mg, the 10 mg.
So, like everybody on this forum, I want to do what I can to stave this degeneration off. I am still cognitively OK, but with bad memory. The Aricept gives me insomnia and other problems, so when I saw Dr. Bredesen not recommending it, I am now slowly getting off.
I have read Dr. Bredesen’s book and watched some of his videos and am trying to follow his lifestyle recommendations.
My question is: Does the Bredesen protocol work for DLB? Would I benefit from functional medicine?
Thank you.
Welcome back,777!
It's wonderful to hear from you again. Samantha is probably enjoying a healthy life as a health coach in New Zealand. As one of our interns last year she was a short-term and highly valued member of our Support Team.

I am sorry to hear of your unplanned journey through various tests and health care providers this year. Having experienced significant vertigo about a dozen years ago, with the MRI and CT scan and a diagnosis of probably virus, it can be very hard to explain to someone that vertigo isn't just "dizziness"; and that the world won't stop moving and shifting. I was lucky that meclizine helped me. I hope that your doctor is working with you to find something that can reduce your vertigo, which would probably greatly improve your quality of life.

As for Lewy Body Disease (LBD) researchers view it, along with Alzheimer's, as showing as a "disease" that has "biomarkers" in the brain long before someone might progress to being diagnosed with "dementia". It also seems to affect people differently, based on which area(s) of the brain are affected. Since your EEG showed "intermittent" slowing on one area, it appears that you probably have been diagnosed in the early stages of this disease. Because of tests like PET scans, MRIs and EEGs, doctors can see what are signs of a disease even before we or our family may see clinical symptoms of the skills we use in everyday life. In some ways that's good--we know that we need to protect our overall health and plan for what we want if our needs increase. (As someone who is 68 and ApoE 4/4, with a strong family history of Alzheimer's, I updated my advanced directive and medical power of attorney in March and my husband and daughter know my values and preferences for quality of life and quantity of interventions.)

Most importantly, perhaps, is that with this information you can build on Dr. Bredesen's suggestions and also seek out specialists in the LBD field, and experiences of people with LBD. As an example, I have a friend whose son had frontal-temporal dementia (FTD) and who now leads support groups for people newly diagnosed with FTD and their families. If I got a diagnosis of FTD, I would want her on speed dial for the nitty-gritty, day-to-day advice that only a "veteran" can provide.

With that in mind, the Lewy Body Association is an organization you may have found, and whom I would trust for some guidance. Here's their advice on using a team-based approach, looking at both medications and lifestyle interventions:
LBD is a multi-system disease and usually requires a comprehensive treatment approach with a collaborative team of physicians and other health care professionals like occupational, physical or speech therapists. Early diagnosis and treatment may extend your quality of life and independence. Many people with LBD enjoy significant lifestyle improvement with a comprehensive treatment approach, and some may even experience little change from year to year.
Lewy Body Disease Association

Here's their advice on sleep disorders, which you seem to be experiencing:
Sleep disorders include REM sleep behavior disorder (RBD), excessive daytime sleepiness, temporary loss of consciousness with difficulties wakening, insomnia, and restless leg syndrome. These sleep problems can be subtle and hard to diagnose. Evaluation by a sleep specialist can help identify and treat these issues. RBD involves acting out dreams and may result in injuries from hitting bed partners or falling out of bed. Symptoms of RBD may appear years before any of the other symptoms of LBD. The diagnosis of RBD is important because treatment with melatonin and/or clonazepam can be effective.
https://www.lbda.org/go/symptoms-0

And here's some suggestions on interventions using different treatment approaches. (As someone who has needed PT more than once, I've been amazed by the skill and compassion of PTs dealing with those experiencing gait and mobility issues.)

Lifestyle interventions include eating a healthy diet, exercising, and remaining socially active.
Physical therapy includes cardiovascular, strengthening and flexibility exercises, as well as gait training.
Speech therapy may improve low voice volume, poor enunciation, muscular strength, and swallowing difficulties.
Occupational therapy helps maintain skills and promotes functional ability and independence.
Music and aromatherapy may reduce anxiety and improve mood.
Individual and family psychotherapy may be useful for learning strategies to manage emotional and behavioral symptoms and to help make plans that address individual and family concerns about the future.
Support groups may be helpful for caregivers and persons with LBD to identify practical solutions to day-to-day frustrations and to obtain emotional support from others.
https://www.lbda.org/go/treatment-0

FInally--and maybe most helpfully, you may want to see if one of the LBD Research Centers of Excellence are within driving distance. Here's the list: LBD Research Centers of Excellence The more unusual the disease, the more it may help to find someone who devotes their career to working with those dealing with it. (I say this as someone whose son had surgery when he was one day old that saved his life from a surgeon who we were lucky enough to have in our hometown.)

Hugs from someone who lives in the same lovely state of Virginia as your daughter, I hope you get to visit her soon.
4/4 and still an optimist!

777
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Re: New Member - Troubled by Memory Loss

Postby 777 » Sun May 24, 2020 1:29 pm

Thank you, NF52. Very useful information, especially about the research. Didn't know that people playing contact sports have a higher risk. I was in coma for two weeks after concussion from a car accident in my childhood.


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