Scared

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
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wac
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Scared

Post by wac »

Hi I just wanted to reach out as struggling at the moment and find It difficult to talk to my wife.

I am 43 and noticed I've had some memory issues for the past few moths ago, I visited the Doctor who basically said it was probably nothing to worry about. Anyway I Googled various symptoms which then made things worse. I've now got to the situation where I don't know if the things I am forgetting like recalling peoples names instantly is normal or not.

I've also struggled recently on a number of occasions to get the correct words out in some sentences. I've now been back to the Doctors and he has now ordered a blood test. I therefore wondered if I should be asking him any questions about the results?

If I request it I can have a brain scan as an additional check. Now the sound of a brain scan really scares me and I just wondered if anyone had been through anything similar? Is a blood test followed by a brain scan the normal sequence for trying to detect if anything is wrong?
NF52
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Re: Scared

Post by NF52 »

wac wrote:Hi I just wanted to reach out as struggling at the moment and find It difficult to talk to my wife.

I am 43 and noticed I've had some memory issues for the past few moths ago, I visited the Doctor who basically said it was probably nothing to worry about. Anyway I Googled various symptoms which then made things worse. I've now got to the situation where I don't know if the things I am forgetting like recalling peoples names instantly is normal or not.

I've also struggled recently on a number of occasions to get the correct words out in some sentences. I've now been back to the Doctors and he has now ordered a blood test. I therefore wondered if I should be asking him any questions about the results?

If I request it I can have a brain scan as an additional check. Now the sound of a brain scan really scares me and I just wondered if anyone had been through anything similar? Is a blood test followed by a brain scan the nom armal sequence for trying to detect if anything is wrong?
Hi Matthew,

You've reached out in a very safe place, since many of us have been where you are. In fact, it's how this forum got started, when a group of people found out their ApoE4 status and then found out that their doctors didn't have much information, advice or even reassurance to offer. They decided to become both a support and a source for high-quality information. At almost 68, and with ApoE 4/4, I won't dismiss your concerns, but will offer some thoughts, in nor particular order:

1. ApoE 4 is a genetic risk, but not a dominant gene for late-onset Alzheimer's disease, defined as a diagnosis at age 65 or higher. It is not associated with the dominantly inherited and rare forms of early-onset dementia of people in their 40's. Most of those people have a strong family history of many relatives in an extended family who were diagnosed with significant language, memory, behavioral, and motor issues in their 40's, not subtle changes at all.

2. Recalling people's names "instantly" is a form of "free recall", which is different than "aided" or "cued" recall. Cued recall is something like saying "The new Prime Minister's first name starts with a B" and you replying "Boris Johnson". Or "the scientific name for your knee rhymes with Nutella and you saying "patella", or even "Meghan and Harry have a son whose name is Alex or Archie" and you saying "Archie". It relies on recognition of a word in your memory from phonics, or context. Free recall requires your neural networks to go find the answer in the right spot with no cues. We do that best with our family, although I am famous for blurting out one son's name when the other is in front of me, and I know exactly what his name is. If you are searching for the name of someone you see less often, your brain has to reach for the right category. That requires processing time, and that operation naturally becomes less speed-of-light as you move past your 30's. It's not that you don't know the name; it's that your processing speed, probably like your speed of writing, or of running, or of doing math in your head, is slightly slower, but not less successful.

3. Getting words out in a sentence is also a motor processing task (I used to supervise speech pathologists, who taught me a lot about how complicated speech is.) We have to plan what we're going to say next as we speak something else, and if we're tired, or stressed, or trying to deliver complicated or new information, or sometimes just not thinking about it, we may "trip" over our words, or insert the wrong word, or forget the word we wanted. A neuroscientist explained this to a class I attended this way: Your brain is like a class of smart kids who always want to raise their hand and answer the question first. So sometimes, when you might want to say "I wish to disclose the correct paradigm", your brain hijacks this and offers up something like "I wish to disclaim the correct paradox." Might be a word close in meaning, or close in sound, or just a more familiar word. None of that is a sign that your brain is not working; although it might be a sign that you are over-tired, or stressed, or just trying to talk faster than your language center can keep up.

4. You don't mention what kind of blood test your doctor is ordering, but it might be helpful to rule out easy issues that might crop up in anybody: low iron, low thyroid, low Vitamin B-12 (I didn't know I was low in this until I was told in a clinical trial that my score of 422, while "normal", was below the recommended level of 500. Taking 500 mcg/day of methylcobalamin brought me right up to a healthy 650 or so.)

5. Having a brain scan will probably tell you that you have a perfectly healthy brain, because that's what you'll most likely find out from an MRI. I have had them since I was 55 (first to rule out a bad cause of tinnitus, and then in the last three years as part of a clinical trial.) At 68, I still hear: "Your MRI is normal". Unless you've had a history of moderate to severe TBI, I'm not sure you need to have, or worry about a brain scan.

6. It might be more helpful to give yourself permission to learn some guided relaxation strategies, whether that's mindfulness, meditation, or cognitive behavioral techniques to deal with intrusive worries. Your brain is most likely feeling a little stressed itself, and will react to some calming self-talk such as "I've got this! I am thinking, planning, organizing, evaluating, monitoring and reflecting on my thoughts and actions perfectly. I will give myself permission not to land a perfect "10" dismount off the high bars every time I open my mouth. My brain is fine!"

Hugs from someone who could be your ApoE 4/4 mother--and is still doing fine with the occasional name-drop.
4/4 and still an optimist!
KendrahB
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Re: Scared

Post by KendrahB »

wac wrote:I am 43 and noticed I've had some memory issues for the past few moths ago, I visited the Doctor who basically said it was probably nothing to worry about. Anyway I Googled various symptoms which then made things worse. I've now got to the situation where I don't know if the things I am forgetting like recalling peoples names instantly is normal or not.

I've also struggled recently on a number of occasions to get the correct words out in some sentences. I've now been back to the Doctors and he has now ordered a blood test. I therefore wondered if I should be asking him any questions about the results?...If I request it I can have a brain scan as an additional check....
Hello there! I am one of the new interns on the site and came across your post. I also happen to be a licensed Speech Language Pathologist. I first want to commend you on self-advocacy for your concerns! By looking for answers, assessing your own performance, and even posting on this site, you have shown great fortitude and courage. This forward-thinking attitude is a great place to start for anyone with a health concern. I hope I can help you some in your journey to seek answers - I've inquired about some of your concerns noted above:
  • 1. What brings you to the site? General concerns, or have you had genetic testing for the ApoE4 gene? What were the results, if so?
    2. You describe "memory issues"; this descriptor can include a lot of things! Can you provide examples regarding what specific changes you are observing?
    3. What symptoms did you google for further information?
    4. What blood tests have been ordered (if you know)?
Regarding your concerns about forgetting names - this is extremely normal. Over 56% of the population reports difficulty recalling names across various age groups. I wish I had the reference article on this for you, but I can't seem to find it in my archives at the moment. I can also say from personal experience, I have "tip-of-the-tongue" syndrome multiple times in a day, and I am 32 years of age :). This is new for me in the past 5 years, but is a normal phenomena. Difficulty recalling names or thinking of words can also occur at various frequencies in persons who have depression, anxiety, increased stress, or changes in sleep patterns leading to fatigue/poor rest. I don't assume you have any of these issues, I just wanted you to be aware there are other avenues to consider. When I sleep poorly, I know that my word finding skills decline dramatically.

Finally, in regards to the brain scan, it can be helpful to establish a baseline to monitor for future changes, but it is unlikely your doctor will see anything abnormal at this time. If you continue to have concerns about changes in your cognitive/linguistic skills, I would highly recommend requesting a referral for neuropsychology testing. A Neuropsychologist will perform a battery of tests that look for patters consistent with: normal aging, mild cognitive impairment, dementia, anxiety, depression, and many other issues. It's honestly the best place to start when looking for a cause for perceived changes. They will also be able to reassure you if you are within the normal range! At a minimum, they provide a baseline status - so if you do see changes later in life, you can repeat the testing for comparison.

While I have not given you an assessment, I strongly suspect that you have simply become more hyper aware of normal phenomena due to an increased awareness of what to look for. This is an extremely common phenomena and is OK. Again, I'm impressed by your courage to advocate for yourself by looking for answers, and reaching out for help in times of fear. Let me know about the answers to my questions above and I'd be happy to offer additional opinions/address your specific concerns directly. I promise to honestly recommend appropriate referrals if anything you say sounds concerning to me!

All the best,
Kendrah
wac
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Re: Scared

Post by wac »

KendrahB wrote:
wac wrote:I am 43 and noticed I've had some memory issues for the past few moths ago, I visited the Doctor who basically said it was probably nothing to worry about. Anyway I Googled various symptoms which then made things worse. I've now got to the situation where I don't know if the things I am forgetting like recalling peoples names instantly is normal or not.

I've also struggled recently on a number of occasions to get the correct words out in some sentences. I've now been back to the Doctors and he has now ordered a blood test. I therefore wondered if I should be asking him any questions about the results?...If I request it I can have a brain scan as an additional check....
Hello there! I am one of the new interns on the site and came across your post. I also happen to be a licensed Speech Language Pathologist. I first want to commend you on self-advocacy for your concerns! By looking for answers, assessing your own performance, and even posting on this site, you have shown great fortitude and courage. This forward-thinking attitude is a great place to start for anyone with a health concern. I hope I can help you some in your journey to seek answers - I've inquired about some of your concerns noted above:
  • 1. What brings you to the site? General concerns, or have you had genetic testing for the ApoE4 gene? What were the results, if so?
    2. You describe "memory issues"; this descriptor can include a lot of things! Can you provide examples regarding what specific changes you are observing?
    3. What symptoms did you google for further information?
    4. What blood tests have been ordered (if you know)?
Regarding your concerns about forgetting names - this is extremely normal. Over 56% of the population reports difficulty recalling names across various age groups. I wish I had the reference article on this for you, but I can't seem to find it in my archives at the moment. I can also say from personal experience, I have "tip-of-the-tongue" syndrome multiple times in a day, and I am 32 years of age :). This is new for me in the past 5 years, but is a normal phenomena. Difficulty recalling names or thinking of words can also occur at various frequencies in persons who have depression, anxiety, increased stress, or changes in sleep patterns leading to fatigue/poor rest. I don't assume you have any of these issues, I just wanted you to be aware there are other avenues to consider. When I sleep poorly, I know that my word finding skills decline dramatically.

Finally, in regards to the brain scan, it can be helpful to establish a baseline to monitor for future changes, but it is unlikely your doctor will see anything abnormal at this time. If you continue to have concerns about changes in your cognitive/linguistic skills, I would highly recommend requesting a referral for neuropsychology testing. A Neuropsychologist will perform a battery of tests that look for patters consistent with: normal aging, mild cognitive impairment, dementia, anxiety, depression, and many other issues. It's honestly the best place to start when looking for a cause for perceived changes. They will also be able to reassure you if you are within the normal range! At a minimum, they provide a baseline status - so if you do see changes later in life, you can repeat the testing for comparison.

While I have not given you an assessment, I strongly suspect that you have simply become more hyper aware of normal phenomena due to an increased awareness of what to look for. This is an extremely common phenomena and is OK. Again, I'm impressed by your courage to advocate for yourself by looking for answers, and reaching out for help in times of fear. Let me know about the answers to my questions above and I'd be happy to offer additional opinions/address your specific concerns directly. I promise to honestly recommend appropriate referrals if anything you say sounds concerning to me!

All the best,
Thank you very much for your reply, in answer to your queries:

I learned about this website through Dr Bredesen in one of his Youtube videos. I've never had genetic testing.

Memory issues are usually forgetting the names of people I have known in the past. Being able to recall this information which either takes longer than what I believe is normal or totally forgetting the names. I notice the difference when it is someone my wife knows and she can recall the names and I sometimes can't.

Also momentarily forgetting things for example that I should know. So just then reading an article about Covid 19 and then not instantly remembering it as Coronavirus which gets me worked up trying to remember it more quickly.

Examples of speech which caused my wife to get quite angry on a number of occasions includes: Using the word "thing" in lots of sentences without describing the actual item or scenario. So for example: My daughter should wait at the thing! I immediately said the bus stop but a number of times I have used thing in sentences without using the correct word.

Symptoms that I googled were early on-set dementia due to the memory issues,

Unfortunately the doctor didn't mention what blood tests, but has booked me in a week later to review.
He asked about any family history which I explained my aunty had Parkinsons which came late in her life, my other aunty also suffered late in her life with Hallucinations which may have been aligned to Alzheimers.

When I write this information it doesn't seem so bad, but when the anxiety kicks in and I forget names it feels very real.
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floramaria
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Re: Scared

Post by floramaria »

wac wrote: Examples of speech which caused my wife to get quite angry on a number of occasions includes: Using the word "thing" in lots of sentences without describing the actual item or scenario. So for example: My daughter should wait at the thing! I immediately said the bus stop but a number of times I have used thing in sentences without using the correct word.

Symptoms that I googled were early on-set dementia due to the memory issues,

Unfortunately the doctor didn't mention what blood tests, but has booked me in a week later to review.
He asked about any family history which I explained my aunty had Parkinsons which came late in her life, my other aunty also suffered late in her life with Hallucinations which may have been aligned to Alzheimers.

When I write this information it doesn't seem so bad, but when the anxiety kicks in and I forget names it feels very real.
HI wac, Problems with word finding, and even more alarming “noun substitution” in which I spoke a word different from the one in my mind, were the symptoms that caused me to consider that I was having cognitive problems and start looking into what was going on. While most likely your difficulties with words are a normal phenomenon, I want to bring your attention to Dr Bredesen’s work on subtypes for AD in case you are not already familiar with that information. One of those subtypes is Toxic. (pg 104, The End of Alzheimer’s) The toxic subtype does not usually run in families and can begin in late 40’s and may manifest with problems with words. So one thing for you to consider is whether you have had significant exposure to Toxic chemicals , mold, or heavy metals (including mercury from a amalgam fillings or from eating a lot of larger fish like tuna).
I certainly dont want to add to your worries since word finding issues can be totally benign. In my own case though, since I had worked with pigments containing lead and cadmium for most of my adult life, it was easy to identify that as a potential source of my problems and to test those. They were extremely elevated. Detoxification seems to have lessened my word problems.
Functional Medicine Certified Health Coach
IFM/ Bredesen Training in Reversing Cognitive Decline (March 2017)
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KendrahB
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Re: Scared

Post by KendrahB »

When I write this information it doesn't seem so bad, but when the anxiety kicks in and I forget names it feels very real.
I totally understand! Thank you for those answers. That gives me great context and I do agree with your assessment. When listed out, I would observe these behaviors as within normal ranges for cognitive changes. Everyone ages differently, so comparing your specific recall skills to your wife's skills is not the ideal barometer (women have faster word retrieval than men; on average).

I think it's great you are doing some lab-work, and consider requesting the Neuropsychology testing if you don't feel the doctor has fully evaluated all areas you would like to check out (this will provide a comparison to national averages, and to men of your age group, which is a better comparison than your wife's memory/language skills). You're doing the right thing to advocate - just remember when you are in the moment and you forget something, you are having a thought that stems from a belief, that leads to an emotion. But your belief may be erroneous.

For example:
  • 1. Belief = forgetting a name or using "empty speech" (what we would call replacing "thing" for a specific word choice) is indicative of cognitive decline.
    2. This can also lead to thoughts such as "this is bad" or "this is abnormal".
    3. These thoughts lead to a feeling of anxiety or despair, or many other feelings.
If you can back track your emotions to your root beliefs, you can ask yourself: is this entirely TRUE? Or am I over generalizing. At the present, what you DO know, is that you perceive changes, and you are talking to a doctor about them. You are doing your due diligence! From a professional standpoint, I do feel this is very normal - but as always, if you are concerned it's also okay to seek answers. At the same time, try your best to change your beliefs so that you elicit positive emotions - final example:
  • 1. Belief = If I get ahead of this, I will be able to prevent further decline.
    2. This is great news!
    3. I feel optimistic and relaxed.
I hope this is helpful and feel free to pick my brain on any specific questions (you can private message me if that is the case).
Kendrah
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