Hi all,
My 18 year old soon-to-be-sister-in-law (s2bssil) has Episodic Ataxia. She has had symptoms since she was born, and whilst she has had several different (incorrect) diagnoses in her lifetime (including cerebral palsy) in her teen years the specialists identified her symptoms as Episodic Ataxia.
I have joined this forum as I am hoping to make contact with someone who has suffered with Ataxia their whole life (or from a very young age) as opposed to developing symptoms as an adult.
My s2bssil is a real sweetie and quite quiet. She never complains and doesn't always tell family/friends when she is having an attack. She is around close family the majority of the time, and they can always tell when she is having an attack and take the appropriate steps following this - however, I'm hoping to start spending more time with her and unless we're walking around, I don't always pick up on the fact she is having an attack right away.
When she is having an attack, her speech becomes slower and more heavily slurred (though it is always slower and more slurred than the average joe). Also when she has an attack, her limbs become very heavy and she is not able to stay on her feet... which is why if we're sitting together having lunch or watching a movie, I don't always notice when she is having an attack, and she doesn't always tell me!
When she has an attack we sit her down somewhere sturdy, get her something sugary (like a chocolate bar or banana) and a drink of blackcurrant and after a few minutes she starts to come around - so it is not a distressing experience (for those around her any way, I don't know what is it like for someone that suffers with ataxia) its just something that I know she finds frustrating.
I know that she has a spoonful of cornflower in her drinks (like blackcurrant) which is meant to help reduce the frequency/likeliness of attacks, but I don't know how often she does this (daily, weekly, etc) or how helpful she finds it.
I also know that when she gets excited an attack is more likely (for example, when she comes to visit us she always has one, and at Christmas too).
Basically, I'm wanting to understand what its like for someone who suffers with Episodic Ataxia. As I said earlier, she is a really good kid who is very smiley and loves being with friends and family and getting involved, however she doesn't say much, and she definitely doesn't say much about her condition. Anyone that can shed some light on:
* what an attack of this nature is like (is it distressing? or more of a nuisance, like a migraine?)
* is there anything you find helpful that reduces these attacks?
* anything you would like to share that you think would be useful for me to know.
I love her to pieces and just want to do my bit to be more aware and understanding of what she goes through on a regular basis.
Thanks in advance! Hana
I have had EA 2 since I was a child. The first attack I can remember was when I was 8 but I had symptoms before then. Diagnosed at the age of 37 after many misdiagnoses. I find the attacks distressing and often cry afterwards but mine are longer and don’t go without sleep. I have never heard of corn flour reducing attacks!! Sounds strange to me. I am on fantastic medication that has reduced the frequency of attacks with great success but it only works for some people with EA2 and she may have EA 1.