Agenesis of the Corpus Callosum

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Agenesis of the Corpus Callosum
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    Community Voices

    10 items under $100 that changed my life with a disability #FunctionalNeurologicalDisorder #AgenesisOfTheCorpusCallosum

    Living with a disability can be an expensive and aids such as wheelchairs or bathroom renovations can really break the bank to make life more liveable. Here are ten of the most useful tools and services I use to make my life with Functional Neurological Disorder, sensory issues and a disorder of the corpus callosum easier to cope with.

    1. Spotify and Audible subscriptions


    These might seem like obvious answers to this question but when my body refuses to co-operate and my fine motor skills go out the window? These apps have saved the day, grounded me and distracted me from the tics and grunts that fill my days. As an added bonus, living in regional Australia means I have to travel for specialist appointments quite often and these apps are an excellent companion on those long drives to the nearest big city.

    2. earplugs (and learning how to put them in properly)


    Earplugs made of either silicone or of foam have been a disabled girl EDC staple for me for a long time. Cheap and effective, these ear plugs cushion the blow of loud, overwhelming spaces and make trips to the grocery store possible. An important note though is that proper insertion of earplugs makes a world of difference! Check out the short clip below from the National Institute On Deafness and Other Communication Disorders for a step-by-step guide to getting a proper seal with your earplugs.

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    3. Laminated Instruction cards


    This one is essential for giving me the confidence to go out in public knowing I will be taken care of during a pseudo-seizure- and it's practically free!

    I have written out a short set of need-to-know facts on a business card for strangers to read if I am unable to communicate with them properly. using some clear sticky tape to cover the card completely and make it more durable, This item gets tucked in my phone wallet or on a lanyard with sunflowers on it (a common signal at airports internationally that a person has additional needs when travelling.) Now, when I leave the house I know that my day won't end with an unnecessary hospital visit!

    4. Medical ID Band


    In this same vein, a Medical ID band gives me the confidence to leave the house, knowing that in a true emergency, paramedics will understand my conditions and treat me in the most effective way possible. This one is especially important.

    Mostly though I wear this band to assure myself that I even if the worst case scenario really does come to pass? I have the best chance of surviving it.

    5. medication container for keyring


    I have PRN. That stands for Pro Re Nata which is some medical latin for "take as needed medication". As another self-assuring measure I like to have them on me at all times while in the stress-inducing environment which is the outside world. So I found a small metal container with a O-ring seal that attaches to my house keys. This small item keeps my pills dry while also being conveniently unforgettable when combined with my house keys.

    6. stuffed toy heat pack


    A weighted soft toys that double as reusable heat packs? Yes, please! These toys come in a variety of sizes and species (Including unicorns!). They are snuggly and comforting as well as soothing for sore joints or aching innards. This is an upgrade from your favourite Teddy that is well worth the investment. An a few drops of essential oils to the microwaveable pouch and you're got a scrumptious sensory experience!

    7. pop-up flower cards


    One of the benefits of connecting with disabled friends is that you meet a lot of people who are going through the same struggles as you. However, this might also mean more visits to those friends in hospital wards. I like to have a stack of cards that I can send or hand-delivery to flower-free wards that open up and become a vase of sunflowers or a jacaranda tree. This gift takes up next to no space in your drawer and can really make someone's day while their stuck in hospital. As an added benefit? You'll make friends with the nurses too, who will appreciate not having to go find a vase for you during hand-over!

    8. harmonica
    This is a bit of an odd one, especially since I can't actually play harmonica; but hear me out. If you struggle to "focus on your breathe" to ground yourself and have found that you never really seem to get much comfort from deep breathing? Try getting an inexpensive harmonica. Since harmonicas make sound both on the in breath and the out breath, it's a sensory cue of how your breathing is going. I try to pucker my lips to include two or three notes then breathe as quietly and consistently as I can, for as long as I can. This auditory cue really helped me to distinguish between fast, shallow breaths and deeper ones. You can even get harmonica necklaces for a a portable reminder to pause and open your lungs every once in a while.

    9. Webster Packs
    I used to go to the cheapest, franchise pharmacy I could find and resigned myself to the judgemental looks from clerks and customers. Why does such a young person have so many medications? I bet she is selling them. How sad... and on and on. That was until I swapped to a family-owned pharmacy with the added benefit of Webster packs.

    Now, every month, the pharmacist portions out my medication into one convenient sheet. This is especially useful for the tiny pills when my fine motor skills are being tested by FND. Rather than popping out four, tiny tablets, I know just press open the bubble labelled "BEDTIME" and we are off to the races. Another benefit of this system is if you have carers dispensing your medication, you need not worry about getting the wrong doses! The transition to your local, family chemist, despite the increased cost is extremely worth it in my opinion.

    10. flowers for mum


    My mum is an unpaid carer for me. She is an absolute saint who makes my life liveable in a very real sense. For this reason, when I learnt that mum really appreciates fresh flowers in the home? It became a must-have item for keeping the peace in this house. keeping mum happy and letting her know I appreciate everything she does for me through flowers is my small way of giving back to a woman who gives me so much.

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    Jade Wright

    Corpus Callosum Disorders: What the Hole in My Head Taught Me

    I’ve always struggled with the in-between. The transitions in my life have always been rocky, and it wasn’t until I discovered the hole in my brain that the reason for this became glaringly obvious. Since the 1800s, people have been researching the effect that lobotomies have on the human brain and the ways it changes the human experience. This gruesome procedure was typically performed on conscious patients through a hole in the skull no bigger than a dime. The effects were life-altering. It becomes impossible for the right and left hemispheres of the brain to communicate, creating fundamental problems in the way we interact with the world. For instance, “Joe,” a “split-brain” patient, once drew a cowboy hat with his left hand after being shown the word “Texas” to exclusively his left eye. Upon removing the blind from his right eye and asking him why he had drawn a cowboy hat, he had no idea. The part of his brain responsible for logical reasoning simply hadn’t been informed of what was going on! Being born without these connections, however, your brain often somehow manages to rewire itself well enough to make describing this task much easier. Corpus callosum disorders (CCD) affect around 1 in every 4,000 people, many of whom have no idea what a corpus callosum is, let alone that they are missing part or all of it. Diagnosable only by medical imaging, these conditions can easily be missed in children without severe developmental delays until they reach adulthood. This is what happened to me. “You are missing a part of your brain,” said my psychiatrist, tucking his blue linen business shirt into his dark trousers. “But you’ve overcome any struggles! It’s not much of a problem these days. If I was you, I would be sitting in the corner just drooling. You’ve done well!” Given that most psychiatrists only hear about callosotomy (a procedure similar to a lobotomy wherein a typical corpus callosum is cut in half to control severe epilepsy), it is understandable that my doctor thought of me as a medical miracle. But I wasn’t seeing a specialist for an utterly flawless mental state. Sitting across from him, staring absent-mindedly through a frosted window into a grey, gravelly courtyard, I was feeling far from miraculous. So when he elevated my brokenness to “the best you’re gonna get,” I felt utterly defeated. This MRI was part of a last-ditch effort to find some peace in my life. Bouncing from one psychological disorder diagnosis to the next, I was beginning to wonder if I was more acronym than human. Obsessive-compulsive disorder, conversion disorder, eating disorder, and on and on. I trusted this man to make me well again and it seems the further we dug, the more emptiness we found. But I had a bright future! Or so everyone was telling me. The trouble was that I just couldn’t see that through the haze of distorted thoughts. I’d like to tell you that after discovering that I did indeed have several marbles missing, I had a catharsis of epic proportions, deciding to take joy in the moments between life’s highlights. But I can’t. In truth, I spiraled downward even more; for now, there was truly no magic pill to fix the hole in my head. But this story has a silver lining, and I’m still writing it. After finding a community online full of successful people with jobs, woes, families, and soul-mates I had a blueprint for how to proceed. Or, at the very least, some paper to draw on. Sitting in that doctor’s office on those chairs that swallow you whole, staring blankly at the window to nowhere, I had no idea what this meant for a country town girl like me. Now several years wiser and with a toolbox full of pills, I think I finally stand a chance against those thoughts of mine. I’m starting to think perhaps, it is in the places we are missing things — in the holes in our heads and hearts — that a true connection can be forged.

    Community Voices

    Brain and body at war.

    Anyone here suffer with Partial Agenesis of the Corpus Callosum and Fibromyalgia?
    I am still coming to terms with these diagnoses and trying to find coping mechanisms and medications that work. Anyone with any insight into living with these two conditions, I would love to hear from you!

    Community Voices

    A 38 year old disabled Artist/College graduate speaks...

    <p>A 38 year old disabled Artist/College graduate speaks...</p>
    3 people are talking about this
    Mary Ann Smock

    How Having a Brother With a Disability Changed My Life Over the Years

    My youngest brother, Timmy, has Vici syndrome — a very rare multisystem disorder that affects his entire being and development. Timmy was born when I was 10, so having a sibling with a disability is something I’ve lived with for almost half my life. All of us, including my brother, found ways to adapt to our new “normal.” Sometimes even now, on the easiest days, watching my brother struggle is hard; and it’s also something that affects every aspect of my life, even if I don’t always realize it. At age 10, it meant that maybe we could get a therapy dog, and that was exciting news. I didn’t fully understand how severe Timmy’s condition was. I knew his progressive, life-threatening condition was causing my parents a lot of stress and I wanted to focus on the positives. At 11, it meant a lot of words I didn’t understand were being used to describe my brother’s life. It meant a lot of stressful phone calls with doctors where I would eavesdrop and only hear half of the conversation, trying to piece things together myself. At 12, it meant letting go of the childish hope that a cure really did exist, and the adults just didn’t know what they were talking about. It meant realizing his condition was never going to go away. At 13, it meant awkward conversations with my friends because there was no easy way to explain it. It meant feeling isolated because no one else understood what I was going through, and it was too much to tell anyone. At 14, it meant feeling useless and out of place at home because there was nothing I could do to fix anything. It meant wanting to be stressed about “normal” teenage things, but I wasn’t because there were bigger things to worry about. I really wanted to be too young to know this. At 15, it meant putting up with insensitive comments from people who would never see my brother as a whole person, and wondering why I would ever want to fit into a world like this one. At 16, it meant knowing my body could betray me and being scared it would. Seeing one’s body act as a container that made them lose different abilities made me feel indifferent for my own. I also experienced guilt because it felt like being healthy was selfish. At 17, it meant finding a job where I felt I’d be good at helping people, where I felt needed, and where I had more control over my situation. At 18, it meant watching my brother struggle to do things I did easily, and feeling just how unfair this was. It meant watching my brother in pain and not being able to do anything to help him. At 19, it means balancing a lot of different “lives” as I go from work, to school, to home — and never wanting to be gone for too long because I’m worried something will happen and I won’t be around to help. At every age, it has meant learning to adapt, learning to be OK. Yes, having a brother with a disability is not an easy journey for either of us, and challenges will always exist. When you have a sibling, regardless of their health, you take the positives with not-so-positives. Through it all, I wouldn’t trade Timmy for the world.