New e4/e4

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
sabaka
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New e4/e4

Postby sabaka » Sun Mar 31, 2019 9:21 am

I want to introduce myself to the community.

I found that I am e4/e4 a year ago when I did 23andMe genetic test at age 58. My both parents died at age 70 and 73 from colon cancer and my first husband died of intestine cancer at age 35. I decided to get genetic data for my children and was shocked to know about e4/e4 status for myself. The children are e3/e4. I do not know anyone having Alzheimer's in my family. However, nobody l know lived over 73. Now, when I start recollecting, I think my dad had memory problems in his 60s, we all attributed it to his head trauma. He was still actively working as a lecturer, lead researcher, wrote books till the end.

I struggle with insomnia as long as I remember and it is getting worse. I have high cholesterol (LDL around 160). I also suffer from arthritis which I owe to an unsuccessful knee surgery after a ski accident. I am optimal weight (21 BMI) and active, currently training for a bike racing season. Unfortunately after years of trying other approaches to insomnia, I still can't get good sleep without Unisom.

After learning about my APOE status I quit my highly stressful job to put my health first and address the issues. Thanks to this community I got a guidance on diet, exercises, sleep, biochemistry, etc. I check wonderful apoe4.info daily for a year as well as pubmed articles related to our genotype.

Thank you everyone for being here!

NF52
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Re: New e4/e4

Postby NF52 » Sun Mar 31, 2019 2:40 pm

sabaka wrote:I want to introduce myself to the community.

I found that I am e4/e4 a year ago when I did 23andMe genetic test at age 58. My both parents died at age 70 and 73 from colon cancer and my first husband died of intestine cancer at age 35. I decided to get genetic data for my children and was shocked to know about e4/e4 status for myself. The children are e3/e4. I do not know anyone having Alzheimer's in my family. However, nobody l know lived over 73...
After learning about my APOE status I quit my highly stressful job to put my health first and address the issues. Thanks to this community I got a guidance on diet, exercises, sleep, biochemistry, etc. I check wonderful apoe4.info daily for a year as well as pubmed articles related to our genotype.

Thank you everyone for being here!
Welcome sabaka!
I replied to your earlier post, but want to give you an extra virtual hug. I am also ApoE 4/4, and had a de-facto first-degree relative (my dad's identical twin) who died of colon cancer at about age 73. My dad died at age 67 of cardiac arrest; seven months after a quadruple bypass. I have been fortunate to avoid any sign of cardiac disease, nor do my 3 siblings show that. My maternal grandfather also died of colon cancer, at age 76 and my paternal grandfather, like your first husband, died of what was vaguely called "stomach or intestinal" cancer at age 48 in the 1930's.

I assume you are on what my GI doctor calls "a short leash" given your family history. I don't mind having colonoscopies when needed (well, a little) and have been able to have pre-cancerous polyps removed (in one case through an outpatient procedure by a colorectal surgeon) before they could lead to the disease that devastated my relatives.

Now almost 67, I made some choices similar to yours. I left a stressful position at age 57 and enjoyed a wonderful year going back for a second Master's degree in a program that challenged my brain--and my long-distance driving skills--and allowed me to meet terrific people half my age as new friends. I know of other women who have made similar choices and found great inspiration in the freedom to get involved in former side interests as well as new pursuits, networking with others or on their own.

At 59, you are also close to the ages of 60-75 that researchers view as critical to study healthy people with Apoe4 to undestand the prodromal or preclinical phase before Alzheimer's disease is diagnosed. If interested in either observational studies or interventional trials beyond that listed in today's Announcement, you can find resources on this site, or check these resources:
And as someone with ApoE 4 interested in the upcoming Biomarker participation study, who will next year be between the ages of 60-75, the target audience for many observational and interventional clinical trials, you may also be interested in some of these resources:

Together We Make the Difference! Participate in Alzheimer's and Related Dementias Clinical Research is from the National Institute on Aging (a division of the National Institute of Health

Learn About Clinical Studies is a helpful NIH website, with a tab for searching (try Advanced Search to find studies near you, or of certain types.)

GeneMatch is sponsored by the Banner Alzheimer's Institute and sends a cheek swab for DNA testing, then notifies you of studies for which you may be eligible.

We look forward to having you post on many forums and share your insights and experiences!
4/4 and still an optimist!

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SamNZ
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Re: New e4/e4

Postby SamNZ » Sun Mar 31, 2019 8:54 pm

sabaka wrote:I want to introduce myself to the community.

I found that I am e4/e4 a year ago when I did 23andMe genetic test at age 58. My both parents died at age 70 and 73 from colon cancer and my first husband died of intestine cancer at age 35. I decided to get genetic data for my children and was shocked to know about e4/e4 status for myself. The children are e3/e4. I do not know anyone having Alzheimer's in my family. However, nobody l know lived over 73. Now, when I start recollecting, I think my dad had memory problems in his 60s, we all attributed it to his head trauma. He was still actively working as a lecturer, lead researcher, wrote books till the end.

I struggle with insomnia as long as I remember and it is getting worse. I have high cholesterol (LDL around 160). I also suffer from arthritis which I owe to an unsuccessful knee surgery after a ski accident. I am optimal weight (21 BMI) and active, currently training for a bike racing season. Unfortunately after years of trying other approaches to insomnia, I still can't get good sleep without Unisom.

After learning about my APOE status I quit my highly stressful job to put my health first and address the issues. Thanks to this community I got a guidance on diet, exercises, sleep, biochemistry, etc. I check wonderful apoe4.info daily for a year as well as pubmed articles related to our genotype.

Thank you everyone for being here!

Welcome sabaka, it is so great to have you here and contributing to our website. I am sure you have heard of Dr Breuss in your insomnia journey - but if not he is a great resource for so many things. It is wonderful you are taking on board the information you are finding in this community, your dedication checking the website for a year shows that perseverance is clearly a strong character strength for you. We are all here if you need any more information and I hope you get some good feedback as far as getting involved with some clinical trial work. Cheers SamNZ
Samantha McBride
Functional Medicine Certified Health Coach

mike
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Re: New e4/e4

Postby mike » Mon Apr 01, 2019 10:22 am

sabaka wrote:I struggle with insomnia as long as I remember and it is getting worse. I have high cholesterol (LDL around 160). I also suffer from arthritis which I owe to an unsuccessful knee surgery after a ski accident. I am optimal weight (21 BMI) and active, currently training for a bike racing season. Unfortunately after years of trying other approaches to insomnia, I still can't get good sleep without Unisom.

This will be an area you will need to work on. The brain takes out the garbage, if you will, while you sleep - particularly during deep sleep. And from what I've read, sleeping pills do not get you to deep sleep. Have you been tested for sleep apnea?
Sonoma Mike
4/4

sabaka
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Re: New e4/e4

Postby sabaka » Mon Apr 01, 2019 10:51 am

NF52 wrote:We look forward to having you post on many forums and share your insights and experiences!

Thank you NF! It is very encouraging to see people who share those damned genes doing great! Thank you for the list of studies, I will try them as soon as I qualify.

sabaka
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Re: New e4/e4

Postby sabaka » Mon Apr 01, 2019 11:28 am

Thank you for your support. Sure, getting a good night sleep is the priority to work on. It was the main reason I decided to quit a job: to focus on the natural sleep. I gave it almost 12 months trying to avoid pills and use alternative approaches. Most of them are mentioned on our forum. There are very few, if any, things one can enjoy being sleep deprived. I wear fitbit Charge tracker and I find it rather accurate. I did not notice any deep sleep reduction using Unisom and I feel 1000% better after sleeping 7 hours vs 4-5. May be because I use it for the last 20+ years?

PSu82537%a6r_dnz
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Re: New e4/e4

Postby PSu82537%a6r_dnz » Tue Apr 02, 2019 4:29 pm

sabaka wrote:I wear fitbit Charge tracker and I find it rather accurate.


Hi Sabaka....thanks for joining up. Can you tell us a bit more about what the fitbit Charge tracker tells you? Specifically, is it in any way a possible substitute for the at-home sleep apnea testing?

Thanks and regards,
Sue

sabaka
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Re: New e4/e4

Postby sabaka » Tue Apr 02, 2019 5:01 pm

PSu82537%a6r_dnz wrote:Hi Sabaka....thanks for joining up. Can you tell us a bit more about what the fitbit Charge tracker tells you? Specifically, is it in any way a possible substitute for the at-home sleep apnea testing?


Hi Sue,
Fitbit tracks your heart rate and movements during the day. Based on this data fitbit is able to calculate the following:
- when you fall asleep
- when you woke up
- how many intervals, duration of each interval for the following phases of sleep:
deep sleep
REM
restless / awaken during the sleep
light sleep
I think their algorithms are good and the estimates of the sleep phases are accurate compared to other devices I used.

From what I read It’s normal to toss 10 – 30 times a night. But what’s not so normal is to toss that much within a single hour. It could be a strong indication of sleep apnea. I'd say fitbit could be a good tool to realize that you have problems, but not a device to diagnose any of them.

I definitely can see how my sleep is affected by noise, light, coffee, teaching classes late at night, doing long bike ride, etc.

Anna
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Re: New e4/e4

Postby Anna » Tue Apr 02, 2019 9:44 pm

Welcome to the community Sabaka. I am also 4/4 (I learned my status a couple years ago at age 52). This is quite a journey, isn't it?

I am intimately familiar with the misery of chronic sleep deprivation resulting from relentless insomnia. I am not sure if you are aware that the anticholinergic effects of some drugs, including the antihistamines in Unisom, are linked to dementia. This is the article that got me to stop antihistamines cold turkey: http://doctormurray.com/popular-drugs-including-benadryl-linked-to-dementia-even-at-low-dosage/ I turned to more natural remedies and am currently sleeping much better with low-dose melatonin and hemp-based CBD. If I have break-through insomnia, I turn to other supplements like ashwagandha or PharmaGaba.
~Anna
4/4 but so much more

sabaka
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Re: New e4/e4

Postby sabaka » Wed Apr 03, 2019 11:41 am

Thank you, Anna! Not an easy journey so far.
Anna wrote:I am intimately familiar with the misery of chronic sleep deprivation resulting from relentless insomnia. I am not sure if you are aware that the anticholinergic effects of some drugs, including the antihistamines in Unisom, are linked to dementia. This is the article that got me to stop antihistamines cold turkey: http://doctormurray.com/popular-drugs-including-benadryl-linked-to-dementia-even-at-low-dosage/

I read about antihistamines and brain and stopped them too for 12 months. Started experimenting with different supplements as ashwagandha, valerian, magnesium, melatonin. I am still taking baby melatonin as I am convinced that it helps me sleep better. However, I was never able to achieve restful sleep in these months. I used Calm app and podcasts to help me relax and get the disturbing thoughts away. My average sleep went to 5.5 hours per night and life lost all the colors. I resumed Unisom 3 months ago after reading https://www.ncbi.nlm.nih.gov/pubmed/30098049 . Now I am almost at 7 hours and feel much better!
I did not try Pharma Gaba. I was prescribed gabapentin to improve my sleep at some point and used it for a few months


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