Rochelle Roman

Community Voices

What It's Like to Experience Brain Fog With Chronic Illness

The other day I was trying to explain brain fog to someone who’s been healthy their whole life. All the descriptions I’ve found online are woefully inadequate. To paraphrase a few sources: Brain fog is a symptom of several chronic illnesses characterized by temporary bouts of confusion, difficulty concentrating and reduced mental acuity. To anyone who’s experienced it, you know how debilitating it can be, but if you haven’t experienced it, how can you possibly begin to grasp what it’s like? Here’s the best explanation I’ve come up with: Have you ever walked into your kitchen for a specific reason, maybe you needed to grab a pen from a drawer, but without even thinking, you find yourself looking in the fridge or pantry. You’re scanning for food, without even realizing that’s not what brought you to the kitchen. You do that briefly before you remember, what you’re looking for isn’t in the fridge. Oh yeah, you think, I came here for a pen. So you walk to the drawer and take your pen and head back to whatever you were doing in the first place. I think most people can relate to this experience. Now imagine having that experience every time you do anything. Imagine, the next time this happens and you think oh yeah, I need a pen, you close the fridge and turn to the drawer. You open the drawer, but by now you’ve forgotten what you needed again. You close the drawer and open a different drawer. You see a can opener. You grab it, you don’t know why. You start walking out of the kitchen. You get two steps away, look down, see the can opener in your hand and wonder, huh, why do I have this? Is it time to feed the dog? What time is it? It’s 3 p.m. Nope, not time to feed the dog. What was I doing before? I was on the couch. What was I doing on the couch? This thought process is slow and deliberate as you try to puzzle out your own actions. Next, you walk over to the couch, you look at the coffee table. You ponder what you were doing. You see a small pad of paper and remember, you were about to make a to-do list. Eureka! Only instead of a pen, you brought back a can opener. OK, time to go back to the kitchen and try again. So you walk back into the kitchen, return the can opener, but by now you’ve forgotten what you were doing again. You’re pacing the kitchen and you’re not sure why. You notice you’re pacing so you stop yourself and try really hard to focus. What was I doing? You run through everything you remember from the last few minutes until you finally remember the to-do list again. You grab the pen. Finally. You walk back to the couch, sit down, and think very deliberately with all the concentration you can muster. The words come to your mind begrudgingly: to-do list. But what were you going to put on the list? You were certain you had about seven things you needed to put on the list but right now you can’t think of any of them. So you start writing little things: “Shower…” What else? “Run dishwasher…” Oh yeah! You’ve remembered something important: “Grocery shopping.” But that thought derails you and before you know it you’re making a grocery list. That’s alright, at least it’s vaguely on topic. But your grocery list is weird because you can’t remember what you need, or if you can remember what it is, you can’t remember what it’s called. So instead of listing olive oil, which you need, you’ve put “almond butter” on your list, which you bought a few days ago but have forgotten. Instead of listing aluminum foil, you stare at the paper for a minute, unable to think of the right words, and ultimately end up writing “cooking metal.” Sometimes entire days pass and at the end of it you can’t recall what you did. Did you spend the whole day staring at the TV? I don’t think so. I’m pretty sure I did something, but I’ll be damned if I know what. You check your calendar, your emails, looking for some clue about the day you just lived. A calendar entry for yoga reminds you that you didn’t go and, instead, went shopping. Your memories of the day are dancing around in your peripheral vision, like imps, tantalizingly close but just out of reach. What else happened?! Sometimes you feel you’re losing yourself. You feel that, in addition to cognitive impairment, your very personality is shrouded behind an impenetrable wall of mist. On really bad days you have a hard time following conversations. You think you’re paying attention but suddenly you’ll realize you have no idea what the other person is talking about. Or if you do know, you can’t seem to muster much of a response beyond, “huh,” or “that’s strange.” You were having thoughts while the other person was talking but now that you need to respond, all those thoughts are just out of reach, puckishly dancing away from you in the fog. Every single moment of your brain-fog-filled day is a battle for words, for focus, and when it’s all over, you’re lucky if you can remember it at all. You have to fight your own mind to do simple tasks that other people take for granted. It’s exhausting, supremely frustrating, and more than a little scary. Can you imagine that? Can you imagine having to struggle to string together a simple sentence? Can you imagine having to play detective to figure out your own recent past? Can you imagine going sometimes weeks without seeing the end of the fog? Knowing that you’re still bright and capable, but your brain is just burned out from being too sick to function? Maybe you can’t; I wouldn’t blame you. It’s hard for a healthy person to fathom. But I thought I’d try to explain, in case someone in your life is dealing with brain fog and lacks the words to help you understand it.

Finding Hope After a Prader-Willi Syndrome Diagnosis

Evan was 4 days old when the NICU doctor finally gave in to our insistent questions. He was full term but couldn’t breathe or eat on his own. Something was wrong. The doctor hesitated, reluctant. “Have you ever heard of Prader-Willi syndrome (PWS)?  We can’t be certain without a blood test, but he seems to meet some of the criteria.” She put pages she had printed from the Internet on the counter. My husband, Blake, went first. “Don’t read it,” he said through puffy eyes. I read the first bullet point, then waited an hour. A few more bullet points the next hour. I couldn’t handle it all in one sitting. Failure to thrive Physical, cognitive disabilities Anxiety, aggression, behavior issues Infertility Just as I had begun grieving the healthy baby we thought we were having, I grieved the possibility of grandchildren. Insatiable appetite, unrelenting hunger Morbid obesity The list seemed endless: Skin picking, apnea, speech delays, scoliosis, tooth decay, autism, weak muscles, vision impairments, lethargy, small hands and feet, short stature, seizures, psychosis, slow metabolism. I moved past the bullet points and on to the pages of text, fumbling through unpronounceable medical terminology. I learned PWS wasn’t hereditary. A small piece of chromosome 15 had broken away — a fluke, a 0.005 percent chance. Why him? Why us? Words like locked refrigerators and group homes leapt from the page and into the lump in my throat. Then, like a knife… Life expectancy: 30 years. No cure. I looked at my sleeping baby, wondering about his quality of life, then mine and Blake’s lives, too. That night we were transferred from IU West to Riley Hospital for Children. I looked back at our empty car seat, then ahead to the ambulance we were following, our fragile newborn inside. Exhausted from trying to keep up with the calls and messages from family and friends, Blake created a Facebook group, Team Evan, from the Riley NICU waiting room. Hours passed before we were allowed to see him. The visit was brief, as Evan was too weak to be handled or even open his eyes. We had nothing with us besides the clothes on our backs and a new breast pump, so we decided to go home and try to rest. Dark thoughts flooded over me as I laid in bed. This cannot be my baby. We will never manage this. How can this be happening to us? That morning, Blake peeled me off the stairs, where I sat, head in my hands, weeping. He helped me into the car. I can’t go back, I don’t want to go, I protested. We received our visitor passes and scrubbed in. There was a nurse already working in Evan’s room. “He had a good night, the night nurse only reported two destat episodes.” We were silent, but she smiled. I wondered what she meant by “destat,” but didn’t have the energy to ask. “Would you like to hold him?” Not really, but I didn’t want to seem like a bad mom, so I settled into the recliner while she and Blake untangled his wires and tubes. I studied Evan for a long time, running my fingers through his blonde hair, then along his nasal cannula, feeling the dutiful hum of oxygen pumping through. I looked up at Blake looking down at us. “He’s beautiful,” he whispered, tears in his eyes. In that moment, a fire lit within me. My dark thoughts turned into I’ll do whatever it takes. And ever since then, that’s been our mantra. Whatever it takes. Christmas came and went. We spent three more weeks in the hospital, enduring a series of x-rays, ultrasounds, an MRI, MRV, EEG, exams we had never heard of, pokes and pricks before Evan was deemed strong enough to come home. A few days later, our pediatrician read us the test results over the phone, confirming our worst fears. Whatever it takes, whatever it takes, we reminded each other. We started early interventions, sought out the best doctors and got plugged in to the PWS community. We read updated and promising research literature. Evan started growth hormone therapy, delivered via needle injection every night, to help him grow. Hope blossomed. Natalie and Evan. Evan is now 7 months old and aside from gross motor delays, he looks and behaves much like any baby his age. He’s inquisitive, social and starting to get into everything. He lights up our world. His weekly therapies and appointments are well worth the effort. Now that Evan has graduated from his feeding tube and is fairly stable medically, we’re in the “honeymoon phase” of PWS. The insatiable appetite has not yet set in, but that will likely change as he enters early childhood. Each day is a blessing and a challenge. Evan is growing stronger, but we are also one day closer to hyperphagia – when Evan’s brain will trick him into thinking he’s starving. All. The. Time. Although we are encouraged by current medical advancements, PWS research efforts are grossly underfunded. We ache when we hear about another research study delayed because of lacking funds. We want to see our Evan live life full – not just in his belly, but in all facets of his life. His future depends on this research. So, in the spirit of whatever it takes, we fundraise. We advocate. We raise awareness. We get loud. And we leave the darkness behind. To donate and follow this journey, visit One Small Step – Team Evan Learn more about the incredible research your donations are funding: Foundation for Prader-Willi Research  

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