Welcome!!!

[chrissyr]

My mother, too was acutely aware of fuzzy thinking, poor memory all the way along, and continues to be aware of it in mid-stage dementia. She is always saying "remember when I used to have a good memory" and "there's that great head of mine again". I guess it is a different progression for each person. She still enjoys life though when she is feeling comfortable and relaxed. (food, walks, nature, music, people she loves, kids, humor....)

[CarrieS]

I think that my mother knew that she was descending into AD but she seemed to fight it along the way. Her mother had AD so it seemed to me that this was her worst nightmare so acknowledging any memory problems just wasn't going to happen with her. She was never "one of those people" when we were around other AD patients. I've always had a suspicion that her AD was due to Herpes Simplex in her 40's as her symptoms started in her 50's and lasted just shy of 30 years. I had to be creative when I took over her finances, took her to the doctor, etc as she would be really angry if I told her that she was getting forgetful. It was ok when she chose to stop driving but not ok to be told that she couldn't drive anymore. Getting her to sign legal papers was interesting when it came to giving me Durable Power of Attorney. She was certain that she would NEVER need help but finally agreed that it would be a good thing to have a DPOA as a back up just in case she was in a car accident and couldn't pay her bills. Think deep exhale here. Of course, she hadn't been paying her bills for various reasons so after getting the DPOA I was at least able to keep her finances on track and arrange care for her as the disease progressed. I agree that everyone's journey is personal and that finding joy along the way is truly important.

[NancyM]

My mom and dad lived with us for the last five years of his life. Mom was blind and had other health issues so they moved in when Dad progressed to the point where Mom couldn’t handle it alone anymore. Because of my mom’s blindness, my dad always took care of her and was her protector. Well into his AD journey, she basically became his “mission”. Although his short term memory was gone and he couldn’t remember many people anymore, he was always cognizant of having to take care of Mom. Mom was in and out of the hospital a few times and those nights were rough. Because she wasn’t in bed with him he would repeatedly get up and walk around the house looking for her. I specifically remember one rough night when, after I explained again where she was and that we would go to the hospital first thing in the morning, he basically sat there with his head in his hands lamenting that he didn’t know what was wrong with his memory and why he couldn’t remember anything. It was my dad’s nature to not ever complain or let on if he was sick or in pain or anything, so these moments were always difficult. Earlier in the disease Dad would fake it and act like it was a joke when he realized he had forgotten something, so I guess that was his form of denial.

[bscheller]

Not sure where to go to ask a question, but I did the 23andme test wanting to see what my reading would be since my mother had Alzheimers. The results came back today and I must be dumber than dumb but I don't see anything under the three categories of Ancestry, Traits or Wellness that gives a clue on this. (Yes, info on where ancestors likely from, sweet & bitter taste, deep sleeper or not, etc. etc.). I think I read somewhere that it's not always reported. Anyone else have this experience or can tell me what I'm missing? Thanks. Or, if it's really not there (Bredesen listed 23andme as a possible way to find out)...how else to pursue this.

[slacker]

Hi bscheller, and welcome!

I am not a 23andme test interpretation expert, but there are several threads with chatter on how to get a good interpretation. There is a site called Promethease that can process the raw data from 23andme and give you something more readable. Our site does have a search function (right upper corner, 3 vertical dots). You can search on 23andme or promethease to read earlier conversations.
Hope this somewhat vague response is helpful!

[jolicoeur]

Welcome to the forum bscheller!

There is Genetic Genie that helps to interpret the data from 23andme. Here is the link: http://geneticgenie.org
There are info on the web if you search for Genetic Genie.

Another great place to be where you can get lots of information and support is the primer. Here's the link: viewtopic.php?f=33&t=1418
It has been written by Dr. Stavia, a member of our community, and it talks about science, prevention, lifestyle modifications. I hope you will find it useful.

Everyone's experience is different and you will see that here. Also, the primer takes you to places that really do help in reversing cognitive decline.
In addition to the forum, The End of Alzheimer's book came out. It's by Dr Dale Bredesen - a leading pioneer in the field. It is written for lay people and easy to understand.

Again welcome bscheller.

[bscheller]

Thanks, all. I've read Bredesen which is why I did the 23andme. but my question is actually extremely elementary: I do not see anything that I'd call "raw data" from 23andme nor how to get to it. Just some very general summaries about long middle finger and toe, etc. etc. Nothing with the allele notations nor how to get to such a chart which I could probably send to Promethease if I needed help. Been reading various threads and Stavia's work which has been excellent. Am anxious to know my status and am not usually computer-dumb, but don't know where the raw data is hiding on 23andme. Thanks all!

[SusanJ]

Look under the "Tools" menu item, for "browse raw data". That page allows you to put in "snps" or the numbers than start with "rs".

[bscheller]

Thanks!! Yes, I finally found that at the bottom of the Tools menu, but thanks for your hint, Susanj had I not. I think you're saying I want to look at the numbers starting with rs and probably those in my father's and mother's line in order to get to the Alz. allele? Thanks again.

[SusanJ]

Yep. Look at rs429358 and rs7412.

Below is a table from https://www.snpedia.com/index.php/APOE. Check your two letter results for each snp against the last two columns in this table. The "gs" numbers are just the "genosets" for the two rs numbers combined. Hope that's not too confusing.

Apo-ε1/ε1 gs267 rs429358(C;C) rs7412(T;T) the rare missing allele
Apo-ε1/ε2 gs271 (C;T) (T;T)
Apo-ε1/ε3 gs270 (C;T) (C;T) ambiguous with ε2/ε4
Apo-ε1/ε4 gs272 (C;C) (C;T)
Apo-ε2/ε2 gs268 (T;T) (T;T)
Apo-ε2/ε3 gs269 (T;T) (C;T)
Apo-ε2/ε4 gs270 (C;T) (C;T) ambiguous with ε1/ε3
Apo-ε3/ε3 gs246 (T;T) (C;C) the most common
Apo-ε3/ε4 gs141 (C;T) (C;C)
Apo-ε4/ε4 gs216 (C;C) (C;C) ~11x increased Alzheimer's risk

So, for example, I'm a 3/4. My rs429358 is C;T and my rs7412 is C;C.