New here. Should I get tested?

[Apollos]

Hi all, I just wanted to introduce myself.

I learned about this community while reading Dr. Bredeson’s The End of Alzheimer’s book in order to help my dad who has been diagnosed with Alzheimer’s. He has just taken the ReCODE test and we are awaiting the results. With so much information available, what do you think would be my next best step to take?

Also, I am in my early 30’s. Would anyone recommend that I take the ReCODE test now or wait until later in life?

Thanks for your help in advance!

[Tincup]

Also, I am in my early 30’s. Would anyone recommend that I take the ReCODE test now or wait until later in life?

Welcome Apollos!

If you don't know your ApoE4 status, that might be a place to start. Read our Wiki on the topic.

I think optimizing the basic strategies listed in our Primer are a good place to start for anyone, of any allele. When Stavia, the author & an MD, found out her 4/4 status, she was alarmed and talking to one of her children, now also a doc. He said something to the effect, well Mom, you just have to live well, like everyone should!

I'm 65 and this is likely what I'd do at your age (i.e. find out my ApoE status, but maybe in a way that wasn't in my medical record - 23andme under an assumed name?). Then try to live as well as I could. My thought is doing a little bit early is better than having to do a lot later on. This is the advice I give my own kids, who are in your age bracket.

[BloomAgain]

I learned about this community while reading Dr. Bredeson’s The End of Alzheimer’s book in order to help my dad who has been diagnosed with Alzheimer’s. He has just taken the ReCODE test and we are awaiting the results. With so much information available, what do you think would be my next best step to take?

Welcome Apollos to the apoe4.info site!

We are glad you found us and hope you find the wealth of information and support of the community helpful. Congratulations on your courage to seek information and to initiate biomarker testing on your father. Tincup offered some great ideas and resources, I'd just like to add a few other links that will help you navigate the site.

How-To Get the most out of the ApoE4.info website was created to help new (and not so new) members navigate the site. This area explains how to use the quotes button so that the other member receives an email notification of your reply, how to search for topics, how to subscribe to topics of interest and more.

While your father waits for test results or seeks help elsewhere, there are lifestyle strategies he can begin trying out today. Sleep, stress, exercise, and nutrition are all areas he can address. You can read about all of these in the wiki pages. If you are Searching for a Healthcare Practitioner or would like to find ApoE4-Aware Healthcare Practitioners, you can check out these wiki links.

Again, welcome and feel free to ask questions.

[NF52]

Hi all, I just wanted to introduce myself.

I learned about this community while reading Dr. Bredeson’s The End of Alzheimer’s book in order to help my dad who has been diagnosed with Alzheimer’s. He has just taken the ReCODE test and we are awaiting the results....
Thanks for your help in advance!

Welcome, Apollos!

You have some great advice from Tincup and BloomAgain, so I will try not to repeat any of that. Instead, as someone who may be about your dad's age (I'm 68) and with two copies of ApoE 4, which your dad may or may not have, I know up close and personal what it's like to live both with the risk of this diagnosis and with a parent who had this diagnosis. Please know that lots of people here are offering you and your dad virtual hugs!

If you dad is like most men of my generation or older (including the one I've been happily married to for 40 years), he'd rather face a rabid raccoon in the living room than go to a doctor to talk about what's going well and what's different, and he'd rather face two raccoons that join a group of similarly-diagnosed guys. So here's a little nudge for him: I know two smart, terrific men diagnosed 3-4 years ago with early-stage Alzheimer's before the age of 65 and I know the spouses of a few others.

* ALL of them advocate for meeting with others who are in the early stage of AD!
* ALL of them can travel, meet with friends (virtually or with social distancing now) and are actively involved in writing and speaking out against the stigma our society gives to an Alzheimer's diagnosis!
* They talk about working around issues they experience, as many people do with sore joints, hearing issues, heart disease, prostate issues, etc. without apology!
* They want to fill their days with people, places and activities they love, and not to second-guess what they did or didn't do in the past. They are also willing to spend time and effort seeking ways to stay healthy--even if those ways aren't guaranteed--since they hope to help themselves, their families and others who may be facing this diagnosis.

Like you finding this forum, your dad may want to explore online a bit to see if any such groups are a fit for him.
If so, or if you want to explore for him, here's a link to the University of Washington's Memory and Brain Wellness Center, which has a strong commitment to AD prevention and treatment research and to promoting wellness for people with mild cognitive impairment or AD. UW MBWC Community Events Programs
If you scroll down the offerings, they offer a 75-minute Zoom session each month called Memory Loss: A guide to next steps as an introduction to what may be a strange new world for your father and you.

Finally, if your dad is interested at all in participating in clinical trials which seek to reduce both the symptoms (such as memory and language issues) and the neurological signs (such as amyloid beta oligomers and tau tangles) you may want to check out the article below. As someone who was in a clinical trial and knew others in them who followed the Bredesen Protocol and worked with a Functional Medicine Practitioner, neither one closes out the option of the other. The men I referred to above have all been in a clinical trial and know they were on the target drug, and believe it has helped them greatly. That's just anecdotal, not statistical, evidence, but it seems we are close to options for those who need every available weapon in their fight.
4 drugs which may get approval in 3-5 years

Hugs to both of you.

[Apollos]

Thank you all for you feedback. You are all so supportive! I will be reading up on these resources you mentioned, and will stay positive in this journey. : )

[Rainy]

Hello, Apollos, and welcome to this terrific forum! With apologies for this belated message, I would like to inject a clear note of caution on the question of getting tested yourself in your early 30s. After caring for my parents with Alzheimer's for several years each, I definitely wanted to understand my own risk status. 23andme test results revealed two copies of APOE-E4 for me and no E4 copies for my husband. By definition each of our children, now in their early 30s, carries one copy of E4. In order to protect their ability to obtain health and long term care insurance coverage in the future, I strongly urged them not to reveal their E4 status to their doctors or to enter their E4 status into their medical records. I bought long term care insurance several years ago, so I am comfortable sharing this information with my doctors, and I have participated in a few studies that required E4/E4 participants. With any luck, by the time you and my children are in your 60s like me, there will be an Alzheimer's cure, so all this caution will be moot and unnecessary! Take good care and a hearty welcome once again!