Hi my name is Kara Simone and I wanted to share my story. I got diagnosed at 4 years old with Agenesis of the Corpus Callosum after having a seizure and subsequently getting an MRI. I got diagnosed with ADHD in middle school and Generalized Anxiety Disorder in my early twenties.
If you don’t know what Agenesis of the Corpus Callosum (ACC) is already, it is complete or partial absence of the part of the brain that connects the two hemispheres. In some cases, ACC can be accompanied with other brain anomalies. It ranges in severity. I have Partial ACC and my case is mild, it can affect people in different ways.
Also, I was diagnosed with Mosaic Turner Syndrome at 16. A somewhat traumatic appointment with an endocrinologist and a geneticist around that time revealed problems with my fertility. I’m fine with it now though, even though I have my moments. Other than anxiety, ADHD, and Thyroid problems, my health is alright. I had my first bone density test in 2020, that’s an important to do for those of us with TS considering lack of some hormones can lead to bone issues.
Thank you for reading. I wanted to share my story because dealing with things that most effect my mental health and fertility has a huge impact on me and I want people to know they are worthy and not alone. #MentalHealth #Anxiety #AgenesisOfTheCorpusCallosum #TurnerSyndrome #Infertility #ADHD #GeneralizedAnxietyDisorder
Hello my #MightyTogether followers!! Today I submitted another story to be published on #TheMighty It is one of my most vulnerable stories but I feel it needs to be shared. I hope you all will read it! Sending light 🕯 #Depression #Anxiety #Hydrocephalus #PTSD #AgenesisOfTheCorpusCallosum #MightyLeader
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.
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!
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.
Don’t let anyone tell you that you can’t be weird because you have a disability. I am always sarcastic and some look at me like it’s a crime that disabledperson is trying to be funny and weird. Then they make fun of me because they don’t get it. Who else feels this way? What do you do or how do you respond?
#Disability #SpinaBifida #AgenesisOfTheCorpusCallosum #Hydrocephalus #CerebralPalsy
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!