Berri wrote:Greetings to all:
I've been reading the Primer (thanks so much) and some of the stories. I am hoping that someone can give advice on how I should proceed. I have the e4 allele (is that how to say it?) plus I have 14 close family members who slipped into dementia in their late 70s/early 80s. I am now 84 and except for losing the occasional name I don't seem to have symptoms....
I have sent in the $1400 payment for Bredesen's ReCODE. I found someone to help me figure out the tests but they want $850 for four telephone sessions. Then I suppose there are more costs along the way. I realize it's all cheaper than being in an Alzheimer's facility but I live on a small pension and Social Security. I do have great medical insurance but will I be able to turn in any of these costs and count on being reimbursed?
My biggest question is regarding my regular doctor. She told me in so many words that if it isn't in mainstream medicine, she doesn't believe in it. Therefore, I haven't asked her for any of the tests. Should I? I am pretty sure my Medicare plus my excellent BC/BS would pay reasonable costs. I just don't know how to think about the doctor's mainstream philosophy.
I am very grateful for this website. It's overwhelming enough now but would be worse without you. Thanks!!!
A warm hug Berri,
You and your brother are inspirations to this 66 year old! If only I had the talent to play either golf or tennis!
First, let me say that you appear to have gotten past the peak age for people with ApoE 4 to be diagnosed with either mild cognitive impairment (MCI) or dementia (Alzheimer's disease and vascular dementia being the most common types in the general population). The reason that is good news is that is makes it MORE likely that you and your brother have other longevity and health genes that have kept that ApoE 4 in check. For example, your brother who died at 65 of a massive stroke may have had cardiac issues associated with ApoE 4. But you haven't had heart disease or strokes. Similarly, you haven't had diabetes, another possible risk factor.
If you have only one ApoE 4 allele (or gene) you have only a 20-25% chance of getting either MCI or dementia. Think of it as the risk someone who skis a lot might have for a broken bone. It's not huge, but it's probably bigger when they are newer to the sport. By the time someone has been skiing 50 years, they have probably got a lot of skills and resilience to dealing with bad conditions on the slopes. The fact that your brain has been "skiiing" with ApoE 4 for 84 years means it must have lots of built-in capacity and learned resources to compensate for the normal changes in aging (like forgetting the occasional name--something we all do!)
It's certainly possible to develop some cognitive issues in your 80's even if you don't have ApoE 4, but a recent study showed that dementia in the 80's "looks different" than at younger ages, and is more tied to other serious health issues like heart disease, diabetes, history of strokes or head injuries and overall frailty. Doesn't sound like you!
So, as far as your ReCODE payment and the costs associated with that: It's a very personal decision on what is of value to you, and what you can afford without hurting your ability to have a good quality of life--including being able to sleep without worrying about money! I have seen a ReCODE report, and found it fairly easy to understand the big ideas, and the recommendations. I think if your doctor is like mine--someone who is helpful and a good listener, you could take the ReCODE report to her and ask her for her opinion. It could be that something would jump out at her that she'd say "Let's have you try this.." Or she might say everything looks great. Neither the report nor the telephone sessions would be able to be submitted to Medicare or BC/BS. I have a Medicare Advantage program through BC/BS and they don't view these as medically necessary.
So if that's going to be a financial problem, you may want to see if you can cancel. Or get the blood tests and report but not the consultation.
If you just want to good cognitive check-up, you could probably get your own doctor to give you a referral to a nearby Memory Clinic associated with a university teaching hospital. Most medium to large cities have these, and they would be able to tell you if your insurance would cover their thorough assessments. I am in a clinical trial that required me to go through one of those, and while they didn't give me my scores, they do for people who are not in a study. If you find out that everything is okay, it might be a weight off your shoulders at no cost to you !
I hope this helps. Wish we were neighbors; I'd love to have coffee and hear about your life of 84 years!!
Hugs from the state of Virginia--where winter is leaving us alone!