J Smiles struggles with abnormal memory loss and brain fog. Her immediate fear is the early onset of Alzheimer’s -- any caregiver's nightmare.
She paints a picture like only J can of the events leading up to her panic and how she navigated the murky waters to shore.
There are many tie-ins and reference points for you to utilize when speaking with medical professionals should you ever be confronted with "dial-up modem-mind," as J calls it. As always there is humor throughout.
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I wasn't having the best of days. I was kind of in a fog, couldn't really figure out why, but it was time for me to go and visit Zetty, so boom, let's do it. Imma fake it. Hey, Zetty. How you doing? JG, what's the matter, baby? Seriously, lady. I just put my best fake smile on and you could see through it that quickly. Y'all, she came at me so fast, it threw me off my game and a weeble wobble cartoon smacked into her desk and chair. Boom. Ah. The Ah is me hitting my hip. JG, be careful, honey. That's me limping over to her couch to sit beside her. I sit down. I'll be okay, mom. I'm alright. I'm alright. But I'm thinking this is a great opportunity for me to smoke and mirror the whole idea of what was wrong before I walked into the room and to put all of my aches and ailments on to just ramming my body into her desk and chair. JG, well now what's going on? What's wrong with you? Nothing. Mom. I just, you see, I just I just hit my hip on the thing. Right? You know the thing right there. Y'all and I'm pointing. Zetty says what thing? I'm like, right there, mom. I just ran into the thing. She says you mean the the chair? She finished the sentence for me. What? Is my Alzheimer's mama now completing my sentences? Parenting Up- caregiving adventures with comedian J Smiles is the intense journey of unexpectedly being fully responsible for the well being of my mama. 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 heavy, be ready for the jokes. Caregiver newbies, OGs, village members trying to just prop up a caregiver, you are in the right place.Zetty:
Hi, this is Zetty. I hope you enjoy my daughter's podcast. Is that okay?J Smiles:
Today's episode, my memory scare. Is it early Alzheimer's? Parenting up family. I'm accustomed to not knowing where my cell phone is. Maybe I can't remember the name of my prom date. Definitely, I don't know what I ate for lunch yesterday. That's normal memory loss, in my opinion. But if Zetty is helping me finish my sentence, I'm pointing at an object in the room and she can remember the name chair before I can. We have a problem. Let me back up a little bit and tell you what was going on. A few weeks prior,one of my mentors, Jesse Eisler, great guy, his wife, super duper chick, Sara Blakely. She invented Spanx. Awesome freaking couple in terms of invention, and out of the box thinking. He has this thing called a big ass calendar club. And we are constantly challenging ourselves to stretch our minds and grow every single day. And because I'm going through these exercises, it really had me writing down what I'm doing and not doing each day, which is why I could point out when I started slipping. One week, I was so excited, I had three virtual J Smiles comedy shows, and three virtual podcast coming up; o not the audio podcast, but live video podcast. I was going on a vacation to celebrate some friends. so I needed to do all six of these show's pre recorded. Stick with me Parenting Up family. This meant that I had to really pre-plan with Zetty, with the caregivers, my hair, my nails, my outfits had to be down to a T so that I can get everything done. I have never planned my schedule so well, I had an hour for a nap, two hours to exercise, three hours to clean out my mailbox, four hours to write my comedy set, two hours to modify it, six hours to record, two hours to edit. I even put in padding on top of padding to make sure I could get this stuff uploaded, and to the cloud so that each client would have time to send it back to me to make sure they liked it. And I had a week to do all of this, y'all, I couldn't get it done. I felt like my brain was in quicksand. I had everything laid out. And every day, from that Monday through that Saturday, I kept trying to do it, what I would sit down to do, which should take me about an hour, I will look up like three or four hours later. I feel like I'm just moving food around on the plate. You remember when you were a kid, you got to eat your english peas and your brussel sprouts before you allowed to get up. You just spread the food around hoping that the adults don't notice half of is in your pocket. You gave some of it to the dog. And the rest of it, you just put on the edges of the plate. And then you put some of it on the table and you rolled it up under the napkin. That's what I felt like, I wasn't even going to sleep. I just could not complete any other tasks. It's like my brain was on modem dial up. I didn't panic. I thought, J, you've never done pre-recorded shows. And now you're trying to do six. Perhaps you bit off too much and your inner child is freaking out. You put on your big girl panties, but maybe just relax. Go ahead, pack up all your virtual equipment, and do your shows live in virtual, but remotely on vacation. No problem I did that, all the clients were happy, but in the back of my mind, I was like, hey, you're not processing properly. But relax. It's the pandemic, who knows what's going on. The very next week, I get home, I cannot remember the password to get into my banking app. Now before you say oh, but J Smiles, it's just a password. You forget your password all the time. Listen, I can forget the password to my cell phone. Maybe because I changed cell phones once a year, every 18 months, whatever. But my money, there is nothing more important than my money except my mama. And I mean that I save $200 worth of pennies in the second grade. This app and password is the same thing I use this before Jocko died, that's 2012 and it is a combination of my favorite person in the world and my favorite place to travel. I go in and out of it every single day because it is my main bank account with which I pay all of my bills and everyone on my staff when I tell you I can't not forget that; I mean, I can't not forget that. Except right after having modem dial up brain one week, I forgot that thing. Then I had an appointment with an oral sleep dentist, I didn't even though they had those kinds of things, but Yep, they do. So I have sleep apnea, but it's mild enough that I can get a oral sleep thingie pretty much like a retainer that's going to make my lower jaw protrude, locked in place. So then I won't (snore) or something like that. I go to see this doctor, and it asked me to write in the name of my primary dentist. Y'all, total blank, I can't remember my dentist first, middle or last name, which means I can't even look him up in my cell phone. Why is that a problem? He's my cousin, I'm his baby's god mama, he got one kid and I'm her god mama. He is Zetty's god son, Zetty was in his parents wedding; we go together. You know what I'm trying to say? All the way live go together. We go on vacation together. Oh lord. He is the boy version of me. I sat there. I said this, this ain't right. This is not right. This is too much happening at the same time. This is less than a month of real brain soup, can't remember stuff. can't remember people, forgetting words, forgetting passwords. Come on now, I know I'm not trying to make me think or feel I'm having some kind of cognitive decline. No kind of dementia, no kind of Alzheimer's up in here. Okay. I'm an advocate for Zetty and we in the caregiver space, but I'm not what. Hello. That was a Wednesday, Thursday morning. I read a tat tat tat tat tat it on my therapist, email account, and said, Hey, I think I'm having a meltdown because of course, I'm not even willing to embrace that something neurological is happening because that just can't be it. So I decided, well, something's going on maybe I'm depressed. I was hoping to be depressed. The COVID and the pandemic and it's sheltering in place and inside I'm not getting enough vitamin D. What is it? Let me talk to my therapist. I get on a little telehealth with my therapist. She looks at me she's like J Smiles, first of all, thank you for calling to get treated, seen, to get your story out. It's way better to have some help than not. Second yeah something is going on because that doesn't sound like you at all. And third, it is not any level of mental illness disturbance, I've been seeing you for a while. Girl I know what you look like. Sound like present like, if you haven't anything going on with anxiety or depression and this ain't it. You need to go talk to an MD. I'm a big p, little h, big d. I was like, Doc, you sure y'all I'm leaning into the webcam giving her the eye like it like a goldfish in the bowl. My eye getting all big like, hey, look at me again. You sure I'm not used to I don't seem like I got anxiety? I never wanted to have anxiety and depression so badly. She was like, fool, get off of here and go and call your MD'S. Guess what I did? What she told me to, I called the MD'S. Every doctor that had prescribed me medicine in the last year and said, Hey, this is what's going on. This is what I've been experiencing. This is what I've been feeling. I got an appointment with a neurologist, appointment with my primary care. They set up for a series of memory loss and cognitive decline related tests, especially considering my family history. My mother has Alzheimer's. As you all know, her dad had Alzheimer's, you also know that. My primary care started listing and going through all of the medications and symptoms I've had over like the last six to nine months, which I thought was amazing, simply amazing. By the time I saw my primary care physician, it had been about five weeks from when the initial brain fog occurred. I cannot lie, I was some kind of worked up by that point. I called her office and said, Listen, I'm not saying I'm dying, y'all. But what I'm telling you is, I'm paranoid, and I'm in a panic, because I'm a full time caregiver. And what I can tell you miss nurse lady staff person is, it doesn't matter if I have a fever. It doesn't matter if I can tell you my name and count backwards from 10. I have a pressing need for somebody to see me and look at my head. I'm freaking out. I grabbed a beach bag and stuffed every bottle of medication, supplement and over the counter, anything that I've taken in the last 12 months so that the doctor would not only hear the word I said,but could pick it up and see it and read the label. I didn't want to leave anything to my janky memory, or to the doctor having to translate what I meant, or having to look up something on her books, or Google. And you should have seen it my all my pills and supplements literally took up the entire length of the exam table. And I had them in small groupings. Like here are the supplements. Here, the nose break, here's the sinus medication, sleep medication. Here's the migraine medication. Here's the stuff that I took up to three months ago. Here's the I stopped taking six months ago, I was like, hey, because I don't know what stuff might stay in your body for a year. And what things might take two months to trigger. You know what I'm saying? It's up to you, Doc, you got on the white coat. I don't have on the white coat. Now J Smiles does wear white shoes and white pants to perform in but I don't wear a white lab coat. She pulls out a sheet of paper, she starts writing down the dates, and the milligrams and she's like an x's and arrows just like making her own version of an Excel spreadsheet, which I greatly appreciate. That's right, Doc, this, let's go old school with this thing. Forget the laptops, and Siri and Alexa, let's just see how this stuff comes down. She narrowed it down to the fact that there's one medication that I started taking about six weeks before the brain fog modem, slow period of processing started and I had my first COVID shot one week before, actually more like three days before my stupid first COVID shot, y'all. Ha. So my primary care thought, okay, we definitely still have to do the entire neurological workup, because we don't want to take any chances. But J Smiles because you were on the medication for six weeks. Yes, it could have taken six weeks to get into your body and cause a reaction. But you had the COVID vaccination 48 to 72 hours before and the only reaction that I would mark down for me with my first COVID shot would be this brain fog, memory loss lack of word placement. I did not have a fever, a sore arm, chills, fatigue, diarrhea, nausea, nothing with the first shot. Can you believe that? I said Doc, are you kidding me? A month and a week later? Are you telling me that there is a great chance that all it is who-haha that I'm going through is because of a vaccination? Like one part of me wanted to do the happy dance. The other part of me wanted to smack the you know what out of the CDC. Now that's inappropriate, because the CDC didn't do it, but it only people that I know to blame. I shouldn't say blame. Oh, actually, I should say I should smack smack Moderna, I guess because it's the Moderna vaccine. I don't know. I want to smack everybody just because I don't know what else to do. Right? Because it's the anxiety that I felt. Yes. My second shot gave me wildly uncomfortable, flu COVID ridiculous symptoms that I was somewhat prepared for at least psychologically. I had the chills, the sweats, fever, the body aches, my eyeballs felt like there was a match back there. I felt like there were little people in my head, trying to figure out how to get out of my nose, but it was dark. So they were just striking matches behind my eyeballs about every 15 minutes to see their way down to my nasal canal. But that all happened with the second shot. It was during the time of the first shot that what felt like uh oh, am I Zetty Jr.? Am I starting some cognitive weirdness because how do I know if my mom felt some stuff like this when she was my age and she didn't tell anybody and she didn't know anything about it because obviously, the amount of information I have is obscene and compared to what she knew, prior to. Well hell, she doesn't even know now. bless her heart. I told my Primary Care, I said, I know we may not be a large sector of the population. But caregivers, we are like 15 million people at least 12 million. All right, I'm gonna say 15, we have 15 million people of the population, and we are very intense. Y'all gotta help us know, send out some literature or something to let us know that this could be something we feel or this could be something that our loved ones are feeling. Because hell, what is Zetty's reaction included some brain fog, in addition to a little bit of memory loss, some cognitive decline that was just limited to the four to six weeks or two months after her COVID shot? But by no to look for that I could freak out and start thinking she needs another level of medication, or that something is extra soupy going on with their Alzheimer's. I left the doctor's office exhausted, overwhelmed, emotionally underwhelmed by our medical system and needing a drink. Something strong like my Remy Martin's. Ah, I'm like seriously, of all the lingering side effects to have? For real J Smiles has to get the anything cognitive. I thought that was comical. I'm like for real universe, can I just have some more aches? Some more eyeball fire? No, I gotta have some brain fog and some memory loss. So much so that I got to go get my brain checked. I mean, it's not bad that I'm getting all this super extra attention from the neurologist, I guess to have a baseline, a super duper, duper, duper baseline. But hell, oh, there's a really scary ass way to get to it. Parenting up family, we know the truth, don't we? It's just me and you here. As family caregivers, you have anello that has been diagnosed with dementia. There's a part of you. That wonders if you have it or if you're going to have it, if you're predisposed. If you're ever know whether you should get the test that knows if you have the gene, should you live recklessly and live hard because you don't get in any way? Or should you cut out the sugar now and eat even more healthily than you're trying to get to ello to eat and like, work out like you're an Olympic athlete? We already have that little voice on our shoulder of concern and a half, so such an abrupt moment of events to occur, like what happened to me can be very jarring. My hope is that if any of you got the COVID vaccination, any of the three Moderna or Pfizer, or Johnson and Johnson and you experienced anything related to an uptake in brain fog, memory loss, difficulty finding the right word, difficulty with focus. If it didn't go away, within a couple of weeks, please go and speak with your doctor. Start with your primary care when asked them to refer you to a neurologist. You deserve it, you're worth it because the vaccine has not been administered to very many of us. There's not a lot of data on how it's affecting us, but I was able to find quite a bit of data on this side effects of those who had the COVID virus and actually lived to tell about it. There are quite a few people statistically enough people for me to tell you about it, that even after they have survived the Coronavirus and return to life; they have lingering problems with memory issues, brain fog, trouble focusing. They're not calling it dementia or early onset Alzheimer's. There's just saying that it's a neurological impairment, but listen here Parenting Up family. If it look like a cat and walk like cat and meow, you don't have to call it a cat to me, you know okay. Between me and you If you are having trouble with your memory and you gain focus and you are having trouble with your daily functioning, I don't give a two flips if they call it dementia or Alzheimer's or not, that means that there is an impact. And we, as caregivers have to be aware. According to npr.com the research shows that the Coronavirus itself did not create the damage to the brain, but what happened was, the immune system reacted so, erotically or intensely to the Coronavirus that it created the long term problems with thinking and memory. It's as if the brain had been injured, where individuals survived severe COVID virus attacks, that person really may be at risk of developing Alzheimer's. They even went so far as to say when individuals did not survive the COVID virus, autopsies revealed that their brains look like they had had a series of mini strokes because there were like leaky blood vessels in the brain. J Smiles, why are you telling us this those people already dead? Well, the first thing I'm telling you this for is to say go get the freaking vaccine if you haven't, because well we don't want to have is the Coronavirus and we do not want our ello's to get it either. On health matters.nyp.org they go on to talk about this lingering mental fog. The typical fog comes in the form of memory loss, trouble finding words, problems with attention, and sometimes just being overwhelmed by simple daily tasks. Most times, these people have not had a stroke, or any infection in the brain and no seizure. And in the case where potentially an image such as an MRI may not show anything, you could be left stuck with wow, what is it, or what happened to me? In that instance, at least this article suggests that it's inflammation that is causing your brain fog. You can wait and the inflammation should correct itself and go down. Obviously you will need some medication to assist you, but doing puzzles will help you in the meantime. Health.com gave me something I was looking for. It's call vax fog, it's v-a-x, is for people like me, who had the vaccine, and have come out with some foggy brain memory something just from the vaccine. There's not enough data yet to give a lot of words to it or a lot of definition because what people aren't reporting it. So this is my next ask if you've had the vaccine, your doctor or your test site likely gave you a card or a sheet of paper that says hey call this number or click this QR code or click this link and type in any of your symptoms, your side effects, even if you have none or if you have memory loss or if you have an ache in your knee. We have to tell this is the time to be a tattletale so everybody that likes to gossip and tell all your business and tell other people business. This is a time to be a snitch. There's a we don't tell them then they really cannot collect enough data to statistically give it back to the CDC to then tell Twitter, MSNBC, Fox, CNN, blah blah blah.com so that you and I know what the hell to look out for. On health.com here are some of the things that people with the vaccine have reported in addition to the very popular stuff I mentioned earlier: vax fog, weird dreams, dizziness, Bell's Palsy. It's when your facial nerves get very weak, and one side of your face may start to droop. Think about if that is happening to your ello,oh, my goodness, your loved one who has Alzheimer's, they've had a vaccination and their face starts to droop, you could think they have a freaking stroke and it might really be a reaction to the vaccine. Now, of course, still call the doctor, 911, what have you, but what I want you to know, Parenting Up family is that potentially it could be this vaccination. Our ello's can't tell us, they can't say I have a fever, my eyeballs feel like there's somebody with a match behind them, I'm aching, I have diarrhea, my stomach hurts, hey, I'm having more trouble than normal remembering that that thing is a fork or my name. So this is an area where we have to be more engaged and staying on top of the data for ourselves and for them. So we don't end up over medicating them or potentially having them change lanes in their Alzheimer's or dementia treatment for a reason that's unnecessary. As for me, my neurological disturbances have started to dissipate. I'm not 100% back to where I was, but I definitely am on my way. Things have settled enough for me to feel confident to say I don't have Alzheimer's. I'm not on my way to anything early dementia related. I can go ahead and have me a nice glass of something that means you grown and I can smile big and bright. But we will say there were a couple of days when I wasn't so sure. The snuggle up: Number one-Let's be real. As a family caregiver, the anxiety around, do I have Alzheimers? Am I going through some early onset of dementia? It's a real thing for us. If you are struggling with the concept of is it happening to me? Don't let it consume you, talk to your doctor. Number two- If you're starting to feel like you're not sure if your memory is in decline, or your cognitive skills are not quite what they used to be, start journaling. I'm not talking about today, I had a great day I went for a walk with my dog. Start to make a note of how many times you can't remember where you put your keys, or you can't recall a particular word or someone's name in your office or a family member. Obviously, if you're struggling too much to even journal, then that's a problem in and of itself. Number three- Brain health. Let's take it seriously. Traditional Medicine is not do any kind of scans of our brain as a part of our annual exam. We've had to get our teeth check annually, after a certain age colorectal cancer screenings, mammograms for your boobies, prostate cancer screenings, gotta get your eyes checked, blood work is drawn annually looking at your cholesterol and all these other things. Nobody tries to check our brains, but if you're listening to this podcast, and you know better because you know someone who's been affected by Alzheimer's. Look here go ahead and get your baseline, tell your primary care physician, hey, give me a workup. I don't want to wait until I'm having significant neurological issues, interuptions, and a decline. Go ahead give me the MRI, give m the CAT scan, look at how m brain is while I'm healthy. S if and when knock on wood opefully it never happens, if t ere's a zap and any kind of g itch, you all can reference i mediately in the medical w rld, what I used to look like w en I was healthy, and then t ey could get right on it. T ust me, it's worth it, do it. N mber four- Join me every M nday night for a video b oadcast, a vodcast, it's a ideo podcast. It's all about aregiving, but a completely ifferent topic than we have ere. Same title, Parenting Up n partnership with etvokal.com. Follow us on ocial media. Parenting Up has a resence on YouTube, Facebook nd Instagram with unique aregiving content. That's it or now. Thank you for istening. Please subscribe for ontinuous caregiving tips, ricks, trends, and truth. retty Pretty please with sugar n top, share, and review it too. I'm a comedian, Alzheimers is heavy, but we ain't got to be.