My APOE journey

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
User avatar
ArcticWolf
Contributor
Contributor
Posts: 23
Joined: Sun Aug 07, 2016 3:06 pm

My APOE journey

Postby ArcticWolf » Tue Aug 09, 2016 1:34 pm

Hi there--

I've been lurking on this site for a few years now, so I thought it was probably time for me to create an account and share my story and journey, and hopefully find some small way to contribute. :D

I found out my APOE e3/e4 status a few years ago. The reason for undergoing the test was many years of ongoing memory and cognitive concerns which began over ten years ago, which I’ll go into below.

So a little about me—I'm a 48-year-old guy who has always been in good physical health. I did well in school and completed undergraduate and grad degrees in engineering. My memory was never stellar (I have always had problems with names) but nothing that seemed out of the ordinary through early adulthood.

By the time I reached my mid-30s, however, I noticed subtle signs that something was "not right" with my brain. Sometimes I would see a word on the screen or on a page that looked strange or out of place, as if someone had deleted the definition of that word from my brain. Recall seemed more difficult and many memories just seemed fuzzy. On top of that, wrapping my head around complicated projects and topics just seemed to be a lot more effort. Getting though a few hours of work was mentally exhausting and I was beginning to feel like my brain was a 5-pound sack that couldn’t handle the 90 pounds of material that it used to hold.

Around the same time I was noticing that I was having trouble finding the right words and other anomic aphasia and paraphasia such as using yearly instead of monthly, or garage for garbage. Close friends would always correct me and jokingly say "ok Grandpa.” I was also noticing problems spelling and typing where I would randomly substitute similarly spelled words as well as leaving off suffixes or the 's' on plurals.

Since I watched my grandmother go downhill with Alzheimer's in her early 70's and my uncle (her son and my dad’s older brother) succumb to spontaneous Creutzfeldt–Jakob disease that year, I was beginning to get very concerned about my own cognitive issues, especially when I learned of the potential for the early onset form of Alzheimer’s and the genetic influences. Combined with my lifelong history of recurrent major depression and dysthemia, I wondered if I was doomed to losing my mind to dementia in the next few years.

I consulted with a neurologist, who performed a brain MRI and EEG, both of which came back unremarkable. His explanation was that my memory issues were a function of depression, and that I should just increase my SSRI dosage. When that didn’t alleviate my issues, about a year later I turned to the memory clinic at a local university for a neuropsychological evaluation. My functional score and IQ were extremely high (I had great short-term memory!), though the results did show that I had intermediate-level inattentive attention deficit disorder (ADD). In a way this was a blessing in disguise, as life was a constant struggle to juggle everything in my brain sometimes and try to function "normally" as it appeared everyone else around me was able to do. I wondered at this point if my cognitive difficulties were just a function of not paying attention enough.

I tried some ADD medications of the next few years, and while they helped me with focus and motivation (Adderall was incredible btw), they didn’t necessarily address my memory deficiencies and the side effects of each began to be unbearable.

By early 2012, I was really tired on the daily memory “dropouts,” slow memory and brain fog as if my hard drive was constantly losing sectors of data and spinning endlessly when trying to remember a name or fact that I may have just used the day before. I went to the Mayo Clinic where I thought I would surely be able to undergo an amyloid brain scan or other biomarker tests to figure out what was going on. Instead they only performed a basic neuropsych exam and basically told me I was dealing with anxiety issues.

Finally that summer, I saw that a test was offered for APOE gene testing by mail. I decided to take the plunge. Unfortunately I got the results about six weeks later at the worst possible time when I was considering making a major job change across county and walking away from a house with an underwater mortgage. Needless to say, the news of my e4 status combined with the stress of an impeding life decision and lack of sleep sent me spiraling down into the sixth and most devastating major depression of my life. I had hallucinations of my life withering away due to dementia and suffered a complete nervous breakdown for several weeks. I seriously thought I would need to be institutionalized.

Slowly but surely I was able to recover and get my life pulled back together over the next months. After another year, I was finally able to take on a new job in a different part of the country. This has been especially challenging since I deal with many of the same memory deficits and cognitive issues daily, but am trying to see it as a minor disability and stay positive in the hopes that neurological breakthroughs are happening everyday, which is big reason why I am here.

I don’t know how much of what I’ve been dealing with is related to my e4 gene status, but I feel it is part of the puzzle and hope that this genetic knowledge can make a positive difference to each one of our lives. Thanks for reading!

User avatar
Stavia
Mod
Mod
Posts: 5265
Joined: Tue Apr 29, 2014 6:47 pm
Location: Middle Earth

Re: My APOE journey

Postby Stavia » Tue Aug 09, 2016 1:43 pm

hi Arctic and welcome.
I dont have time right now to answer you in detail as we are beginning to gather for our conference in Boulder.
Just wanted to say that you are very welcome and thank you for sharing your story.

User avatar
cdamaden
Senior Contributor
Senior Contributor
Posts: 294
Joined: Thu Mar 17, 2016 1:46 pm
Location: Alameda, CA, USA

Re: My APOE journey

Postby cdamaden » Tue Aug 09, 2016 2:57 pm

Hi Arctic,
I hear you and sympathize with your situation. It must be a challenge and you should know you're talking with a supportive group. I've had similar, but much less severe, memory issues. I'm 49. A few things helped me out.
1. Sleep - go to bed on the weekend and sleep-in. However long that sleep-in is, schedule at least that amount of time for the weekdays. Try to get enough sleep to wake up without the need of an alarm clock.
2. Have your testosterone levels checked. This made a big difference for me.
3. I had noticeable improvements with getting my Vitamin D levels up, taking a daily Magnesium supplement (daily RDA), and adding Omega-3 fish oil to my daily diet.
I'm not suggesting that these actions I took will resolve your issues but they may help.
Keep us posted.
Chris
Chris
E4/E4
Alameda, CA, USA

Harrison
Senior Contributor
Senior Contributor
Posts: 278
Joined: Wed May 06, 2015 10:24 am

Re: My APOE journey

Postby Harrison » Tue Aug 09, 2016 3:57 pm

Welcome Arctic Wolf. I am a male ApoE3/4 carrier in my early 40s and also started to notice I wasn't as sharp as I used to be. As I read your life story, I thought "I wonder if there is any possibility of ADD," and then voila, you mentioned it in the next sentence. I have the sense that I have had undiagnosed ADD, but have never wanted to pursue treatment, so your story has me reconsidering. I can only second Chris on the absolute importance of sleep. I understand that depression can wreak havoc on sleep cycles. After starting to read here, I prioritized sleep and started to lose some of the fuzziness. I also started taking Curcumin, B12, methylfolate, CoQ10, D3, choline, and DHA and think that has helped some. Lately I have been letting the sleep piece slide a bit and I feel the fuzziness coming back. Maybe it is time for melatonin. Since you have been lurking for a while, you have probably seen the myriad of approaches that we take (admittedly a lot of n=1 experiments). Hopefully something that someone has tried will be beneficial to you.

Nancy
Contributor
Contributor
Posts: 460
Joined: Wed Jun 08, 2016 1:30 pm

Re: My APOE journey

Postby Nancy » Tue Aug 09, 2016 5:23 pm

Welcome Arctic Wolf. Thank you for sharing your story. I, too, have ADHD (similar to ADD), and I've had some similar problems. The above advice is very good, and is also what I'm doing and seeing a huge difference, personally. I do take melatonin at bedtime (as well as read one chapter of the Psalms per night-- powerful stuff), and no more problems sleeping. Read through these threads. There is so much information here that will be life changing for you.
3,4

User avatar
SusanJ
Senior Contributor
Senior Contributor
Posts: 2801
Joined: Wed Oct 30, 2013 7:33 am
Location: Central Florida

Re: My APOE journey

Postby SusanJ » Tue Aug 09, 2016 6:41 pm

Artic, thank you for sharing your story and I might add a big hug on digging yourself out of your major depression. I know that is a hard place to be, and even harder to climb out, having witnessed it firsthand with a family member.

Just know that your ApoE4 status is likely only part of the story. Keep reading the site and please do ask questions.

User avatar
Ruth
Contributor
Contributor
Posts: 45
Joined: Fri May 20, 2016 4:44 pm
Location: San Francisco Bay Area

Re: My APOE journey

Postby Ruth » Tue Aug 09, 2016 10:11 pm

Welcome, Arctic Wolf!

User avatar
ru442
Mod
Mod
Posts: 705
Joined: Sun Mar 20, 2016 8:52 am

Re: My APOE journey

Postby ru442 » Wed Aug 10, 2016 6:59 am

Welcome Arctic... you've come to the right place. Diet is also important, read Stavia's newcomers thread if you have not already, tons of good info for us 3/4 & 4/4 folks.

EDIT TO ADD LINK: viewtopic.php?f=33&t=1418
Male 4/4 56 yrs., "Live, Laugh, Love"

Silverlining
Senior Contributor
Senior Contributor
Posts: 366
Joined: Wed Oct 30, 2013 4:14 am

Re: My APOE journey

Postby Silverlining » Wed Aug 10, 2016 7:33 am

Welcome artic wolf, I like your name! Everyone has given good advice, I would only add try to incorporate daily cardio exercise...it helps with EVERYTHING, in my opinion. Big hugs, hope you find us to be helpful to you in your journey of optimizing physical, mental and emotional health!

User avatar
ArcticWolf
Contributor
Contributor
Posts: 23
Joined: Sun Aug 07, 2016 3:06 pm

Re: My APOE journey

Postby ArcticWolf » Fri Aug 12, 2016 9:45 pm

Thank you all so much for the warm welcome and thoughtful suggestions! :D

I have read Stavia’s ApoE4 primer before and have to say it is one of the most comprehensive and helpful overviews of our genetic challenges as E4’s. Thank you so much for all of your expertise and time in putting this together as a resource! Though I have learned a great deal of this material from my own reading of studies and research as an armchair scientist, it is so nice to have it all in one place--especially since my ADD and memory-challenged brain can't keep track of every conflicting study and theory! And kudos for covering the various “hypotheses” on Alzheimer’s, as I have had always felt that there is much more to the story than the amyloid theory that has been the focus or researchers for decades. It’s amazing to me to learn of the brain’s immune system and linkage to the rest of the body that was unknown until recently.

I wanted to share a few of my most recent health tests, since I see that others have done that as well. The last time I saw a PCP was in January 2015 when I had the doctor do a lipid panel, comprehensive metabolic panel and testosterone test.

Here’s where I stood then on my lipids:

Cholesterol – 194 mg/dL (range 100-199)
Triglycerides – 172 mg/dL (range 0-149)
HDL – 32 mg/dL (range >39)
LDL – 128 mg/dL (range 0-99)
VLDL – 34 mg/dL
Chol/HDL ratio – 6.1

As you can see, most of these appear to be normal or borderline with the exception of HDL, which has always been low for me. My first hunch that had some lipid issues in my genetics were tests dating back to my early 20’s where I had very low LDL and HDL (typically under 100 and low 20’s, respectively), while my triglycerides were very high (I remember one test over 550).

My metabolic results in early 2015 were all unremarkable and within normal limits—fasting glucose was 97 mg/dL. The only exception was my bilirubin levels which have been slightly high my whole life, which has led me to wonder about fatty liver disease and the role of the liver in my lipid cycle in regards to my cognitive issues.

Finally, my total serum testosterone was about 429 ng/dL (I had a similar value five years ago), which is within the standard range of 348-1197. However looking at average ranges by age, I am within the bottom 10%. Thanks Chris for bringing that up, since I’ve been curious on how hormone levels have potentially been affecting my brain--both cognition and mood.

And in regards to Chris’ suggestion about sleep, I have figured out that this is one of the biggest keys (and challenges) for me. My body likes to have anywhere from 8-9.5 hours of sleep every night and unfortunately I’m a night owl in a society that is designed around early birds. My brain feels like one of those old bulbs that slowly warms up in the morning and it’s usually mid- to late morning before I feel like a human being. I also struggle with motivation and depression most in the a.m. However, evening after dinner is when everything seem to click and I’m myself again. It’s tough for me to get to bed before 11 pm or midnight. Getting up at 6 am and trying to function on 6-7 hours of sleep leaves me completely running ragged and unfocused, dependent on caffeine to get anything done. On the weekends I try to catch up a bit by sleeping in, but then the three-hour wakeup difference ends up throwing me off again on Monday morning. So far I’ve yet to find a system that works for me in regards to improving my sleep schedule.


Return to “Our Stories”

Who is online

Users browsing this forum: No registered users and 11 guests