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Oct. 27, 2021

Is the test for the ALZ Gene worth it?

Is the test for the ALZ Gene worth it?

J Smiles grapples with whether or not to take the ALZ GENE test. Zetty, her mom, was diagnosed with early onset and Zetty's father had ALZ too. Will knowing make life better or more stressful? J leans into her caregiver crew for support.

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J Smiles:

It started out a benign series of questions. Hey, Jay, what's up with that Alzheimer's gene test? Me? Huh? Little time passes, the next friend, Smiles. I was researching the APOE test. Me, the ape test? What kind of ape test is that? Guerrilla warfare it has to do with something happened in North Korea, I don't know, whatcha talking about huh? My caregiver crew, they're not a game. They are no longer friends, they are fremily. They get in, they dig in. I can't do none with these people, but I need them in my life. By the time the sixth or seventh crew member was snow roll, nudging me about this ALZ gene test. I was like, Oh, I'm catching on now. This is an intervention of some type. What is it about this test? Test for me, test for Zetty, what the hell is going on? So then I approach who I think is the ringleader? Not really sure so I got to go carefully. Brring, Hey, girl. Hey. All right. Listen, I'm only y'all what's going on? Why are you having a tizzy about this Alzheimer's gene test? I mean, it's not conclusive. Who cares about the test? The retort is Jay Hefa, you are single with no kids. One of us is gonna have to wipe your ass. We need to know if you got that Alzheimer's gene, touche, toushe sweetheart touche. Parenting Up: Caregiving adventures with comedian J Smiles is the intense journey of unexpectedly being totally responsible for the well being of my mom for almost a decade. I've been chipping away at the unknown, advocating for her, and pushing Alzheimer's awareness on anyone and anything with the heartbeat. Spoiler Alert- I started comedy because this stuff is so heavy, be ready for the jokes. Caregiver newbies, OGs, village members trying to just prop up a caregiver, you are in the right place.


Hi this is Zetty. I hope you enjoy my daughter's podcast. Is that okay?

J Smiles:

Today's episode is the test for the Alzheimer's gene worth it. They made such a good point parenting up family. My caregiving crew, those people that are thick and thin, tried and true by my side, making every decision crying holding my hand worrying with me about Zetty all the time, actually do have a right to know what my health is doing. Because I am single and I don't have any children. Who will care for me? I never thought about that and I don't know if you have either. Have you thought about who's going to care for you? Should you have something like Alzheimer's? Who wants to think about that? Not me, however, Zetty's father had it; Now she has it. They make a good point. I will be honest, I shucked, I jived, I punted the ball, I procrastinated. Whatever colloquialism you have I did it. It took me more than a year from the time the first caregiver crew member said, Hey, Jay, what do you think about that test? I was like, ah, that is not conclusive why does it matter? The FDA, which in the United States is the federal governing body that decides what drugs are legal and okay for us to consume, as opposed to be healthy. Okay, they don't always get it right. And maybe they're kickbacks and illegal behavior, but what have you that's the best we have. In 2016 or so, the FDA said that there was a test that could determine if a person had the Alzheimer's gene. But they admited from the beginning, you may have the gene and never develop Alzheimer's, or you can develop Alzheimer's and don't have the gene. Hmm. I thought, why would I add extra stress? If the test will not give me certainty? If I had the gene I could see my brain doing all kinds of do loops in my dreams. Oh, man, I can't find my keys, I bet I got Alzheimer's. I don't remember this person's name in the mall, I bet I got Alzheimer's. I can't remember my joke on stage, I bet I got Alzheimer's who needs that. But if it's one thing I'm not, it's inconsiderate, and selfish at the same time. In the completely same instance, there's a group of individuals who love and care about me and Zetty begging me to get this test to plan accordingly. Truthfully Parenting Up family- when I prayed about it, I meditated on it, did a few stretches that helps me. I got to do stretches and deep breathing to really calm myself down when I'm trying to hear my inner voice. I knew for certain that finding out the results would change my lifestyle. You know what I mean? But you have to know yourself. If you think finding out this information is just going to worry you to smithereens, then J smiles says, don't get the test. Because as of now, the date that I'm making this podcast, it can't promise you with certainty that the results will let you know which way you will fall on the ALZ totem pole. But I know my personality, I've been living with me for quite a while now. If I find out that I have the gene, I will live differently. I will make certain lifestyle changes and health risk assessments that I won't do otherwise. I have friends, family, framily, and medical health professional saying "Well since you know differently, why don't you just do it J Smiles?" Well, I do it sometimes. We know what condoms could do too. But uh, anywho if they give me that gene test, and it says that I'm in that percentile, honey child, you best believe I'm going to be 95% living in that prevention, Alzheimer's way of life. I finally got the test. I did chicken out a little bit though. I did not get the test from my neurologist or primary care physician. Let me tell you why, it was going to be a little bit too real and too in my face. They were going to remind me and possibly make me do stuff right away if in fact, it came back positive. That at least was what was hokey in my brain was like, hey, let me go and get this test with somebody. Not all up in my medical business. You know, like, round away, so I went to one of Zetty's previous neurologist, therefore, there was a warm relationship, a person I trusted. This neurologist knew me would take me off the street without asking me a bunch of questions and thinking I was a total crackpot. But also, he wouldn't have the time, or the energy or the responsibility to run me down and see what I'm doing afterwards. See where I'm going with this sounds like it's the best of both worlds. I can get the information, I can trust it, but I ain't gotta be fully responsible just in case I want a little bit ostritch this thing and throw my head in the sand for a little bit. There are two ways to get the test done that we are aware of here at Parenting Up. One, you get the blood work done through a neurologist, I suggest a neurologist because they can really read the results and get into the nitty gritty of what that means. And just ask them, hey, I want the Alzheimer's gene test. Don't try to get all fancy with all the terms and mess it up. Just tell them the result that you're looking for. Also 23 and me allows you to send in a saliva sample. And they will provide your results via email or snail mail. The test is called APOE, Apple Paul Oscar Elephant. I'm not gonna even try to say what it stands for because why does it really matter. We're just hanging out here Parenting Up trying to get through this life of caregiving until there is a cure. The bottom line is they can take a blood test or take a saliva test and figure out if you have the gene. Why do I want us to know? If you think it would encourage you to live a healthier lifestyle, then go get it, that's all this is about. It's about trying to help the family caregiver do things that will create a safer, healthier, happier environment in which you can live and thrive for the remainder of your time here on Earth. So when you get the test, they're looking for whether or not you really have this thing called E four so the A P O E when you see it, it's all capitalized. But the Apo E has strands in it and they're little e's; little e two, little e three, little e four, I'm not gonna get into all of that. But the big bad wolf is little e4. It doesn't mean you're going to have Alzheimer's, but it triples your risk that you will. And it's a DNA thing. It ain't nothing you can do to get rid of it. It's like whether or not you're gonna have red hair, or blue eyes is coming or it's not what not you're gonna have breast or testicles. Because the blood test is not the most common of test requested, it takes a little longer to get the results, at least that's what happens in the United States. I'm not sure about other nations. I will be very interested to see, y'all let me know, drop me a line. It took about two weeks to get my results. I have to let you know during that two weeks, I was a nervous wreck. I didn't know I was and I was like oh maybe I shouldn't have asked me but I don't want to know because what the hell am I going to do? Am I going to start worrying and all of a sudden I started sleeping not so well and my stomach was hurting I don't really know if it was because I was waiting on these test results or not, but factually during that two week period I was a wreck. I get the call from the neurologist Hey Jay How you doing? Pretty good. What's the news doc? He said your results are interesting. Family you know where I went with it? What the hell was interesting, I'm like okay, do I have the gene or not dude? What the hell is interesting is I'm thinking this is a binary thing you told me the gene is I'm either have it or I'm not so I don't understand what interesting is. I didn't know interesting was an option. There's no other right it's not yes, no or maybe will you go with me Alzheimer's? It is yes or no. I didn't do this to him. This is what's going on in my head. I'm holding the cell phone and one throw it at the wall but that would be the opposite of productive. Okay, Doc, interesting I said "Well I don't really know what that means on your end, but on my end, that doesn't sound pleasing." He said "Well hold on, do you want the good news first or the interesting news first?" I said "Oh, oh okay, i's a conjunction. A compound. I didn't know interesting has two parts to it. You should have started with that dude. Ah yeay yeay, let's go with the good part and give me the interesting later." The good part, you don't have the Alzheimer's gene. Bro, wasn't that enough? You can keep the interesting to yourself, that's all I asked you for. Didn't nobody say tell me whatever else you find. Lord have mercy. Who asked for a pregnancy test and say why are you in there, tell me about need a root canal. Hell naw! Anyway, he tells me that I do have two of the e's, two the little e's and the combination of the little e's that I have made me in the high risk for heart disease, like way high risk. If you know about cholesterol, we got the good cholesterol, the bad cholesterol, that's what we call it. In layman's terms, the non medical term you got the HDL and the LDL. So you know, the bad cholesterol we supposed to keep it to 100 or below if you like a normal y'all doc said my needs to be 70 or below to keep me from having risk of a heart attack. 70 or below my whole life, I've been told to keep it at 100 or below. And let me tell you this I ain't never had it at 100 or below, more or less. I've had it like in the low 110s ish. But my good cholesterol is usually so damn good, that it averages out my bad cholesterol which is why I've been Gucci, which in the United States means very, very, very, very, very, very good. Gucci is a fantastic fashion brand that we like very much and the hip hop community has decided to make it be a phrase. Gucci means I could not be better. So I went in to find out if I might have a gene that is not a determinant of Alzheimer's and came out finding that I in fact do have the absolute worst two determinants available in the James by the damn heart disease; okay really? Now, of course, I would rather know than not know I'm an information-a-holic but I say well damn. So now what now I'm supposed to cut out what, so I gotta figure that out. Therefore, maybe you want to think about getting it because it's a blood test that you could find out other information. I was like uh the devil, so my grandmother would say. If you take the test and find out you have the Alzheimer's gene, what can you do to prevent getting Alzheimer's? Absolutely nothing with certainty. Let's be clear, we don't have anything at the taping of this podcast episode, but we are believers in ridiculously optimistic at the parenting of podcast. On health.harvard.edu only 1% of us actually have the Alzheimer's gene that is determinative. That means if you have it, you are going to get Alzheimer's and it ain't jack you can do about it, meaning you're screwed as relates to Alzheimer's, but they don't know exactly how to test for that gene. They can only tell what that gene in an autopsy. Oh, thanks, love it uh, whomp whomp. The other 99% of us, it is medically believe this is agreed across the globe that Alzheimer's is developed. If you ever get it, it is developed from inflammation of the brain, vascular risk factors, and lifestyle. So that gives us a shot, this is a shot at beating this thing down. Alright, what can we do? Aerobic exercise, not lifting weights, people. Everybody trying to get to six pack abs and trying to get the cut biceps. Okay, you cute. Maybe you'll get a date you'll feel good in your jeans and your little crop top. But that ain't doing nothing for fighting off dementia. Aerobics exercise, 30 minutes a day for three or four times a week we're trying to sweat people you want to mean we're trying to mess up your hair and get funky. Funk means healthy brain alright remember it like that. And even a partial adherence to the Mediterranean diet, you ain't gotta go strict. You'll have to turn to be in a Greek god or goddess in the kitchen. Fresh vegetables, not canned, not frozen, I guess if they were frozen, fresh, but you know what I'm saying? Fresh vegetables, fruit, whole grains. Olive oil, olive oil is a really big deal. Nuts, fish. You can have some poultry, but go easy on the poultry. Don't turn into a chicken. If you start seeing feathers fly at your mouth when you go to brush your teeth, that's too much bird. A little bit of dairy, a little bit of red wine, and a smidgen ,itty bitty amount of red meat. Third, take yo behind to sleep. The brain will rectify a lot of what it needs by getting it from the other parts of your body. It will get the nutrients and the water and whatever else that it needs. And it will heal itself a whole lot while you're resting, and you will wake up desiring whatever else you need. You may wake up thirsty, you may wake up desiring salt or craving carbs or craving fruit. Why because your brain is telling you hey, knucklehead, that's what I need. The fourth thing, this is not as statistically connected to brain health and staving off dementia, but all of the scientists believe at least it can't hurt it either we'll help a bunch or at least it won't hurt. Learn something new, once a year. And at a minimum, I'm thinking hey, at least you're not boring as hell at the office party or in your family or in the gathering or in the world trip or at the coffee shop. Because if you are interesting because you have something new to say that you learn that's an actual fact or this the expansion of your mind and the growth alone will make new people want to talk to you; right or hang out with you. Which will increase happiness and your soul and your endorphins which what ah, right; creates less stress, better brain, sleep better. You see where I'm going with this. There we go, gets rid of the depression or the likeliness of you know, Boo Boo Boo, down down down, depressive moods. Caregivers, you matter. Family caregivers of Alzheimer's sufferers you matter. You matter to me, your health your well being it matters. It matters a lot. My caregiving crew hemmed me up and begged me to take the Alzheimer's gene test. I struggle with whether or not to do it. Ultimately, I did it for them. They laid out the facts. They had a very well reasoned case, I'm a lawyer too say hi, yeah, you know, you make a good point. So I encourage you to think about, if you want to take the test, don't let fear be the determining factor. Lean into who you would be doing it for and what you would do with the information. Remember, I got some side information that's about to be very beneficial. All my life till now, I've been very happy with the average of my good and bad cholesterol being in normal range. But now I know that my bad cholesterol has to be skeleton skinn you know what I'm saying. I didn't know that before this test. Here it goes my caregiving crew loving up on me and the universe, nudge them to make me find out something that's about my health. My father dropped dead of a massive heart attack. So I will admit that I'm a little extra sensitive to heart disease, cardiovascular issues, that's my full transparency. The snuggle up, Number one- on your family tree, your direct blood line. If you have more than two on this list, please consider hitting the Alzheimer's gene test. A parent or grandparent or sibling or a child. Number two- try not to let fear be the only reason you don't get the test. Number three- go to sleep. At a minimum six consecutive hours in a 24 hour period. You got to do it- lights off, TV off, cell phone, laptop, tablets everything. Number four- Parenting Up has a live internet talk show. You can come grab a spot and talk to me on video. Ask questions, share your story ,and join the community of caregivers worldwide, as we lock arms and get through this thing together. It's on getvokal.com, Mondays at 7pm Eastern in the United States. We keep the Parenting Up caregiving content coming on YouTube, Facebook and Instagram. As well as go to www.jsmilescomedy.com and sign up for Parenting Up newsletters. That's it for now Parenting Up family. Thank you so much for joining me. Please review the podcast. Share it with someone. Subscribe so you can continue to get these tips, tricks, trends and truth. Remember I'm a comedian, Alzheimer's is heavy, but we ain't got to be