Hi everyone my name is Monee Broadnax I am a 19 year old senior in high school. I am working on a project to pursue my message of bringing awareness to progressive Neurological disorders. I have a form or Ataxia so I can understand where you guys are coming from! One thing to ask you all if you are able and willing is for my project I am using images that will be put into a slideshow and then put on Youtube. I want you guys to take picture of yourself with a whiteboard, computer with bold letters if writing is a challenge (I know it is for me), or a poster saying: a quote from your favorite person book that helps you get through tough times, something that you want others to know about you or even a stereotype. You can do either one of these on your whiteboard! If you do this please email your image at ■■■■■■■■■■■■■■■■■■■■■■■ and #meequalshopeon the whiteboard. Lastly if you are feeling up to it please record your voice or even make a video if you like answering one or two of these questions:
For Parents/Family Members:
What symptoms began to occurred when you felt like it was important to seek a professional?
How has it affected your child's everyday life? Does he/she need assistance?
Can you tell me the day you found out your child had a neurological disorder? What was your reaction?
Persons with condition:
What was your first reaction when you were diagnosed? What was going on in your mind when you were told?
What causes your disorder? Can you treat it?
What is a message you want to send to others out there feeling there isn’t people out there like you?
If you could say something to others who do not have a neurological disorders what would you say or like them to know?
Dear Monee (lovely name), I'm technically challenged, so do not know how to post a video...,so sorry! I can answer your questions though, to help you with your project...,hope that's OK? Anyway, when I was told I had Sporadic Cerebellar Ataxia (unknown cause), I had never heard of "ataxia". I was diagnosed through a process of elimination, with an MRI, muscle/nerve test, blood work, and visual testing. The neurology team had to rule out other things like a tumor, stroke, MS, Myothenia Gravis, Parkinsons Disease, etc. My ataxia effects my gait/ balance (I've used a cane for about four years), dexterity (writing, printing, fine motor skills), speech (slurred) and swallowing (sometimes coughing/choking), There is no treatment for my ataxia. I was 49 years old when diagnosed (although I recall small symptoms about eight years before diagnosis), and am 60 years young now. My ataxia is progressive, albeit slowly. No one in my family, as far back as we know, has/had ataxia, except me. I consider myself special...,ha! I would tell those that don't have ataxia that it is very frustrating, challenging and tiring, as it effects one physically and psychologically, in so many different ways! Exercise for strength and balance (use it or lose it) and eating as healthy as possible helps me the most. Also having a positive attitude, and focusing on all I can do, rather than what I can't is so important! This is difficult though, as I was once very athletic and active. I try to concentrate on each day rather than focus on the future. One of my favorite sayings is, "a woman is like a tea bag, she never knows how strong she can be until she gets into hot water"...,Eleanor Roosevelt. Best wishes with your project..., ;o)
The first time They told me, I was ok, but know 7 years after, that I am living with Ataxia some times I FEEL VERY SAD, because I can not do things that I was doing before, like taking pictures of my grandkids, walk, turn around, enjoy life, I use a walker and I have to think to walk, to move from one side to another, I want to cry,to run, to bake, to be my self and I CANN'T ,