Alzheimers help?

Scrapr

Scrapr

Thinks s/he gets paid by the post
Joined
May 14, 2005
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1,794
Location
Portland
I was at a family function about a week ago & one family member said they are in a research program that will remove the plaque in your brain that Alzheimer's creates. Both my Mom & Dad passed at age 85 from Alzheimer's 6 & 7 years ago. As such I feel doomed at 68. I went in today for the initial consult. 7 or 8 pages of medical questions, then into a staffer to do some testing (aka MMSE...aka the "clock" test). If you don't know the clock test is a request from the tech to draw an analog clock with all the numbers. then the tech asks you to draw a time on the clock...aka 2:40. It's infamous in the memory care world.

MMSE is 30 questions. Count backwards from 100 by 7's, repeat a list of 3-6 words, testor names a list of 15 or so words that are related & then ask to repeat as many as you can, etc. So I did that at the intake. This was sobering as there were several questions I "failed" in my mind. Looking on the internet a score of 24 or below is mild cognitive decline.

Then was passed off to a Dr. we discussed my daily activities, trouble driving?, what do you do all day, what do you have planned, etc. He called my state as mild cognitive decline. Without the history of both parents having ALZ he would not be worried. Then he explained that they can now discover the amount of brain plaque via blood draw. And provide a treatment (clinical trial) to remove the plaque. So after our trip to Italy I am signed up to start onto this trial.

I am both saddened & hopefully optimistic
 
Scrapr said:
I was at a family function about a week ago & one family member said they are in a research program that will remove the plaque in your brain that Alzheimer's creates. Both my Mom & Dad passed at age 85 from Alzheimer's 6 & 7 years ago. As such I feel doomed at 68. I went in today for the initial consult. 7 or 8 pages of medical questions, then into a staffer to do some testing (aka MMSE...aka the "clock" test). If you don't know the clock test is a request from the tech to draw an analog clock with all the numbers. then the tech asks you to draw a time on the clock...aka 2:40. It's infamous in the memory care world.

MMSE is 30 questions. Count backwards from 100 by 7's, repeat a list of 3-6 words, testor names a list of 15 or so words that are related & then ask to repeat as many as you can, etc. So I did that at the intake. This was sobering as there were several questions I "failed" in my mind. Looking on the internet a score of 24 or below is mild cognitive decline.

Then was passed off to a Dr. we discussed my daily activities, trouble driving?, what do you do all day, what do you have planned, etc. He called my state as mild cognitive decline. Without the history of both parents having ALZ he would not be worried. Then he explained that they can now discover the amount of brain plaque via blood draw. And provide a treatment (clinical trial) to remove the plaque. So after our trip to Italy I am signed up to start onto this trial.

I am both saddened & hopefully optimistic
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I think you should take the "mild cognitive decline" score with a grain of salt. I don't think that even many young people would do that great on the test.
 
Scrapr said:
Then he explained that they can now discover the amount of brain plaque via blood draw.
Click to expand...
Is this blood test approved & available for general use right now? Or is it "not ready for prime time" yet? I ask because it's the first I've heard of it and will put it to my dr next Spring.
 
My Dad is in late stage Alzheimer's / vascular dementia.

My understanding is that there is no treatment for dementia currently approved in the US. Exercise and mental stimulation and diet and social interaction are being recommended to delay onset. There are two drugs that are FDA approved to potentially slow progression, so you might look into those. My opinion is they don't work very well and have significant side effects but we only gave them a cursory look for my Dad as he was already mid-stage before we had a chance to investigate.

With any disease with a low cure rate, there are plenty of folks out there who may recommend X or Y or Z as a cure. They take your money and give you hope but little else. My Dad and his girlfriend were almost scammed by one such person trying to sell very expensive vitamins and supplements.

MCI - mild cognitive impairment - is considered the second stage of dementia; the first stage is no impairment at all. The good thing is that MCI can last a long time. I personally think that the activities that delay onset could delay progression.

Good luck with the clinical trial! I hope it works for you. My Mom was in a clinical trial for the disease that claimed her life, and although it maybe only slowed the progression for her, she contributed to getting a drug to market which looks like it will help others.
 
My mother allegedly had a mild-to-moderate case of dimentia as did her mother. My sister (71) now has that diagnosis. I'm 74 and have a bit of trouble remembering names, to-do errands and misplacing things but I chalk that up to normal aging.

My sincerest best wishes to Scrapr.
 
Best to you scrapr. What terrible disease.
 
rembrandt said:
I think you should take the "mild cognitive decline" score with a grain of salt. I don't think that even many young people would do that great on the test.
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I was laughing w/the intake guy when we were doing the "clock" test. In 10 years you are going to have a lot of failures on this item. :)
 
The whole subject of Alz is depressing. Both parents (probably) suffered from it. I'm at an age when they had already demonstrated signs of the disease. So far, I am in better shape than they were but every time I forget a word or can't think of someone's name I'm worried that "ah, ha! There it is!" Then I'll surprise myself when I recall where I put something last year or 3 days ago, so it becomes a yin and yang sort of thing I play out in my mind.

I've "passed" the clock test (more or less) and yet it was very stressful to take. I often wonder if such a test is subject to the same issues as folks suffer when they "block" before an exam for knowledge of a subject in school. I used to do that occasionally, back in the day. I would literally put my head down on the desk/table, try to clear my mind and then begin again. It always seemed to w*rk. Now, my challenge seems to be "what's that word I'm trying to think of that means XYZ?" I hate that!
 
Scrapr said:
Then was passed off to a Dr. we discussed my daily activities, trouble driving?, what do you do all day, what do you have planned, etc. He called my state as mild cognitive decline. Without the history of both parents having ALZ he would not be worried. Then he explained that they can now discover the amount of brain plaque via blood draw. And provide a treatment (clinical trial) to remove the plaque. So after our trip to Italy I am signed up to start onto this trial.

I am both saddened & hopefully optimistic
Click to expand...
In the same circumstances, I would join the trial too. A clinical trial is a trial because the proposed treatment has not been proven effective. Data gathered in the trial will, hopefully, help the medical community learn if it is effective. If it turns out the treatment helps, you benefit. If not, you don't benefit but everyone does from the new information. You should remember that it is not likely that this will be a miracle solution. An effective trial might, for example, show that participants taking the drug show less plague than those taking a placebo but might not show less cognitive decline. Most "effective' trials are incremental steps forward.
 
Scrapr said:
I was laughing w/the intake guy when we were doing the "clock" test. In 10 years you are going to have a lot of failures on this item. :)
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I agree. The one that gets me is the counting backwards in increments of 7. Just trying to do that in my head, I'm struggling. I wonder how many people actually pass that question.
 
Scrapr said:
I was laughing w/the intake guy when we were doing the "clock" test. In 10 years you are going to have a lot of failures on this item. :)
Click to expand...
No question about that! Best of luck, and stay optimistic about it. There have been a number of so-called predictive tests about that which haven't turned out to be predictive at all.
 
I am at an age in retirement where I question my mental sharpness every time I forget something or forget a name.
My mom passed away at age 85 with dementia and Parkinson’s.
I am very much interested in the latest treatment if needed.
However, the reduction of amyloid plaque build in the brain is still not greatly beneficial to anyone in present trials or treatment.
 
When my mum was diagnosed with AD I was there with her and shocked she could not correctly draw the clock. She was not showing other such signs of cognitive loss that severe.

The biggest problem with these tests is they compare the test taker to some median or norm, but they don’t compare the test taker to his or her younger self. In other words, they don’t measure a decline in one’s cognitive ability, and the difference in mental acuity may have always been there. These questions are a very rough and imprecise way of diagnosing cognitive decline and unhelpful at measuring progression of the disease.

It’s not clear just how precise the blood tests or imaging are, but they are a good next step toward confirming a diagnosis and providing a baseline agains which one can compare and assess progression.

So far I think there’s no drug on the market that reverses beta-amyloid loss, and was not aware a reversal was even possible.
 
I am very sorry for the “ mild cognitive decline” label but excited for you that you get to be in a trial. Early intervention is absolutely key in neurodegenerative diseases and the AD community is leading the way. You are one of the pioneers. Safe travels and have a wonderful time.
 
MichaelB said:
When my mum was diagnosed with AD I was there with her and shocked she could not correctly draw the clock. She was not showing other such signs of cognitive loss that severe.

The biggest problem with these tests is they compare the test taker to some median or norm, but they don’t compare the test taker to his or her younger self. In other words, they don’t measure a decline in one’s cognitive ability, and the difference in mental acuity may have always been there. These questions are a very rough and imprecise way of diagnosing cognitive decline and unhelpful at measuring progression of the disease.

It’s not clear just how precise the blood tests or imaging are, but they are a good next step toward confirming a diagnosis and providing a baseline agains which one can compare and assess progression.

So far I think there’s no drug on the market that reverses beta-amyloid loss, and was not aware a reversal was even possible.
Click to expand...
Precisely. My issue with such tests is that I have always had short-term memory issues, likely due to my undiagnosed ADD. Even in school, I tried memorizing Newton's First Law etc, and could never regurgitate word for word. I always needed to understand whatever Physics or Mathematics logic but could never repeat the same law or solution. I could get to the end result through my own steps in Math but not one from text books. If I compare my current self to my younger self, my memory is still very similar and I am sure that I would have failed these cognitive tests even I when I was young.
 
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A good and careful doctor is not going to diagnose dementia simply based on the results of the MMSE. "Oh, 21? Here's your dementia diagnosis. See ya!"

When my father was diagnosed, the doctor did include much of the MMSE. But he also interacted with my Dad for a good 45 minutes. He did a complete health history and physical examination and medication review. He listened to my input and concerns. In my Dad's case the internist happened to be a new doctor to my Dad because his previous internist had retired, but in an ideal world, a potential dementia patient would meet with their doctor for years and so the doctor would form a baseline impression. IIRC in our conversation the doctor was paying attention to reported changes from baseline too - "Dad used to be able to manage his medications but has had mistakes lately" and "Dad always paid his bills on time but now there's a messy pile" and "Dad's making more reminder notes for himself and is forgetting things he normally would remember."

I'll also add that at least in my Dad's case, we were wondering about dementia for a while before his diagnosis. Then it become abundantly clear over the past two years or so. Mostly it's just been supportive type care and no specific treatments, and since we would have done that stuff anyway, the diagnosis mostly just helps us understand what's going on and maybe deal with it in a better way.

It's worth mentioning to anyone still reading that it's important to rule out other stuff that can result in dementia-like symptoms but are treatable conditions. I think the biggest one in the elderly is UTIs, but there are others. Obviously one would want to identify and treat anything treatable before resigning themselves to dementia.
 
RetiredHappy said:
Precisely. My issue with such tests is that I have always had short-term memory issues, likely due to my undiagnosed ADD. Even in school, I tried memorizing Newton's First Law etc, and could never regurgitate word for word. I always needed to understand whatever Physics or Mathematics logic but could never repeat the same law or solution. I could get to the end result through my own steps in Math but not one from text books. If I compare my current self to my young self, my memory is still very similar and I am sure that I would have failed these cognitive tests even I when I was young.
Click to expand...
Other tests might include asking about current events. I recall when they tested my dad, they would ask things like "What is today's date? What day is it? Who is the current president?" I struggled with the subtracting 7 exercise but would have struggled with that when I was 30. Just not my thing as I always struggled a bit with "math facts." YMMV
 
Koolau said:
Other tests might include asking about current events. I recall when they tested my dad, they would ask things like "What is today's date? What day is it? Who is the current president?" I struggled with the subtracting 7 exercise but would have struggled with that when I was 30. Just not my thing as I always struggled a bit with "math facts." YMMV
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I have been failing "What is today's date?" and "What day is it?" ever since I retired. :)
 
My father died at 65, still working and mentally sharp. My mother died of head injuries suffered during a fall on her 100th birthday. While there may have been some cognitive decline, we were still able to discuss the news of the day and what she and her friends were talking about at the retirement home. Still, I worry when I can't remember the right word - on the tip of my tongue type thing - but it usually comes to me. I've never been good with meeting new people and remembering their names. The clock face test seems like it would be easy to me and I can count backwards from 100 by say, seven. As an engineer, I've always been good at math so maybe that's a help. I do crosswords (NYT Sunday, LA Times WSJ), solitaire (where you try to minimize the number of steps to win), KenKen, Sudocku, and others every day. So I suspect what I have is just normal age-related decline at 73 y.o. At least I hope that's the case.
 
RetiredHappy said:
Precisely. My issue with such tests is that I have always had short-term memory issues, likely due to my undiagnosed ADD. Even in school, I tried memorizing Newton's First Law etc, and could never regurgitate word for word. I always needed to understand whatever Physics or Mathematics logic but could never repeat the same law or solution. I could get to the end result through my own steps in Math but not one from text books. If I compare my current self to my younger self, my memory is still very similar and I am sure that I would have failed these cognitive tests even I when I was young.
Click to expand...
Precisely. Our boy was Dx with ADD in 1st or 2nd grade. I looked at the symptoms and realized....That's me! My memory has never been great. In my business I would do dispatch at times. I had to write down the details in my planner. At events I would have to sneak a look at name tags...sometimes for people I'd have met a few times. I noticed a big loss of concentration or memory after my wife passed. I was in a brain fog. Nothing made sense. My world perception was shattered and in tiny bits. I could see the pieces but couldn't act on them

I'm not thinking that this will be a cure. Just advancing science & maybe add a few good years.
 
I was at a family function about a week ago & one family member said they are in a research program that will remove the plaque in your brain that Alzheimer's creates
Click to expand...
When I read this a few days ago a low frequency hum went off. Then I ran it by someone else for which a bell went off. The bolded part. I have always been under the apprehension that Alzheimers is caused by the plaque not the other way around. Might the OP be a slight mis-statement?
 
Koolau said:
Other tests might include asking about current events. I recall when they tested my dad, they would ask things like "What is today's date? What day is it?
Click to expand...
I've struggled with calendar blindness all my life. With retirement, my ability to recall what day it is, and what's on the docket for me, has fallen off a cliff.
 
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