Hi Computer15!Tincup wrote: ↑Fri Nov 24, 2023 5:53 pm For blood tests, there is a list of companies where you can order labs from Quest and Labcorp. New Century is usually the cheapest, but not always. They only work with Quest. There are a couple of states that don't allow you order through these companies. I don't know all of them, but New York comes to mind as one. I've not investigated cognitive testing, but I know others here have. For imaging, you'd need to get a script from a medic.
You've asked a lot of great questions, and that alone is a great strength in planning for a long and healthy life. It's helpful to remember that you only have 50% of your mom's genes overall, and that you are more than 30 years younger, so have decades to benefit from an amazing transformation in our understanding of how to protect out brains, hearts and overall quality of life.
I'm just a year younger than your mother and I also have two copies of ApoE, but I'm still active in many intellectual and physical pursuits . My dad died of cardiac arrest at age 67, yet neither I nor my three siblings ages 70-74 have any signs of heart disease. Probably lots of reasons why, including understanding how to avoid Type 2 diabetes, reduce LDL cholesterol, keep exercising, avoid obesity and manage stress. Your mother's early life experiences, her options for education, work experiences, health care, social supports, enjoyable exercise, and knowledge of healthy fats vs processed foods may all have been very different than yours.
I hope she is making a safe and comfortable adjustment to her new memory care, where staff is usually well-trained on how to support people in still enjoying each day, including reminiscing through music, stories, and routines that offer comfort.
It sounds like you might have posted on this topic because you're potentially interested in the trial that Julie G. referenced. Here's a link to info on it in ClinicalTrials.gov, a site maintained by the National Institutes on Health:
Precision Medicine Approach for Early Dementia & Mild Cognitive Impairment (EVANTHEA)
Unfortunately you're younger than the age criteria for the trial, which is 45-76. But the good news is that it's very unlikely you would qualify as having
In laypeople's terms, a MOCA score of 18-26 would likely indicate someone with significant impairment in several areas, and possibly no longer able to perform at previous levels in work or possibly volunteer activities. So that trial would not be appropriate for you."Cognitive impairment or early-stage dementia as demonstrated by combination of AQ-21 score >4 and either: MoCA 18-26, inclusive, or greater than or equal 2 scores in the bottom 50th percentile for NCI or Executive Function, Verbal, Visual, or Composite sub-tests."
As far as your question about trials disclosing someone's ApoE 4 status, I am in a clinical trial of a drug called lecanemab, but that information is not shared with my long-term insurance company, nor my health insurance provider. They cannot share it with anyone who does not have a need to see it. The lower-age criteria for my AHEAD "prevention" trials is 55, so you are also too young for the kind of amyloid-reducing drug trial.
It's VERY likely that in the next 15 years, before you would be eligible, our knowledge about how to personalize diet, exercise, mental and physical health will all be much better than they are today--which is already light years better than your mother and I knew about until very recently. It's also likely that improvements in safety, effectiveness of delivery of r drugs for prevention of Alzheimer's will be available for people with Apoe 4/4 who are at a higher risk.
If you're asking about testing to know whether you have an elevated level of amyloid in your brain, which is one of the two "biomarkers", along with tau, associated with higher risk--but not certainty--of Alzheimer', the answer would be that you're too young for that to be even remotely likely. If your mom started showing symptoms of cognitive or behavioral changes within the last 5 years or so, around age 67, she probably would not have had a "positive" test until about age 58 or 60. And it's possible she has some issues with her brain's blood vessels, which could have lowered the age of her symptom onset, especially if she had high blood pressure or a history of heart disease. The test from Quest that Tincup mentioned has only a 70% accuracy rate and has never been used in a well-designed clinical trial. I have elevated amyloid myself (and am doing just fine) and I wouldn't pay to have their test.
The PrecivityAD test in highly accurate, but right now is only used by doctors to confirm or rule out a diagnosis of Alzheimer's in someone with typical significant changes in memory or daily living skills. You would be very unlikely to meet that criteria.
If you're asking instead what kinds of blood tests you could get to know where to start, you might want to use the Biomarkers section of the Primer, which was written by a practicing family physician with two copies of ApoE 4 who has recovered from two serious brain injuries and is in her 60's. I used her list to pick things to check using Lab Corp, which has a walk-in lab near me and gives a report by email usually within a day or two, showing your results, what the normal range is for B-12, Vitamin D, glucose, LDL, etc. . If you have a primary care provider and health insurance, they would likely be able to order several of these just on the basis of "I'm 41 and want to be proactive with my health and know what my cholesterol, Vitamin D, Vitamin B12, are, along with any typical annual blood work. You can get a fairly cheap Homocysteine A1C test at any Walgreens or CVS.
If you look at the Strategies in Stavia's primer, she encourages people to look at the low-hanging fruit when deciding what to focus on, rather than trying to completely re-do their lives. It would be very understandable if you were feeling pretty overwhelmed by your mother's changes and need for more support and your own knowledge of your Apoe 4/4. I hope you have someone to share that with who will support you. This forum will definitely support you!
If you're looking for a lower-cost way to begin to chart a path with all this new knowledge, it can sometimes be helpful to work with a health coach who is familiar with Apoe 4/4, who doesn't tell you what to do, but helps you to figure out what goals you want to work on--which might include stress reduction and caring for yourself now that your mom is in a safe place. You can see a list of such people on our Apoe4-Aware Health Coaches.
Anyone who has a user name with the word "computer" in it has a whole brain full of advanced neural networks. So trust in those to keep you strong, and enjoy finding out more here, in a safe place for you.
Nancy