I know, I know, I am supposed to blog about dementia. However, part of my goal with the whole blogging thing is to raise awareness and educate on the topic. Today I digress, because across America tonight, there is National Event called, “National Night Out”. The purpose of the event is to draw neighborhoods together to fight crime and raise awareness. I just happen to be manning a booth at the Stafford, Virginia location for Chiari Awareness. Oddly enough, Chiari has absolutely nothing to do with dementia.
Ah, so you ask, “what is Chiari? “Well, the official definition reads like this; “a serious neurological disorder where the bottom part of the brain, the cerebellum, descends out of the skull and crowds the spinal cord, putting pressure on both the brain and spine and causing many symptoms.” My personal definition is a person who has too much brain to contain, has Chiari. It is a disorder, not a disease, but the effects of it can devastate the person suffering from it. Symptoms such as :neck pain (running down the shoulders at times),unsteady gait (problems with balance),poor hand coordination (fine motor skills),numbness and tingling of the hands and feet, dizziness, difficulty swallowing (sometimes accompanied by gagging, choking and vomiting),vision problems (blurred or double vision) and slurred speech are just a few of the symptoms.
No all diseases or disorders manifest themselves in such a manner that “what is wrong with them” is written on their forehead. We as a society label people who act differently, speak differently, or just overall act bizarre, as weirdoes, or oddballs. Chiari is almost an invisible disorder, and only the person suffering from it knows what they are going through. I personally cannot imagine having the symptoms I stated above and not knowing what causes it, or how to fix it, or how long I will have to live with it. See, with dementia, we can so easily identify an elderly person who “doesn’t make sense” when they talk, as a dementia patient. We base our conclusion on their age and behavior. Ok, so grandpa is 98 and crazy. We as a society understand. We write off the behavior and move on. With disorders such as Chiari, we stare at the person, we wonder what is wrong with them, we call them crazy and we move on, leaving them to wear their label of ‘’misunderstood”.
Awareness and knowledge will take all of us far in life. It will help us live together in peace, harmony and allow us to be empathetic and compassionate toward our fellow man. So, tonight, I will take my dementia hat off, and put on my Chiari hat. I will strive to educate people about this disorder and raise money to find a cure.
I challenge everyone to learn about the things that affect other people. Learn about disorders, diseases; all the bad things that happen to good people, and educate you about it. If we want our health care system to change, we as a society have to change it. The way to change is always through education.
Google Chiari. Study. Learn. Educate. Be the change in the world that everyone talks about. One person at a time, one disorder at a time, one disease at a time. Let’s conquer dementia. Let’s conquer Chiari.