Dear Lori and Loz, We're not drunk, we have ataxia! Words to live by! And you're so right JC, a dose of empathy wouldn't hurt!!! ;o)
Rose, that is what I tell myself about 200 times a day!
Lori
Laughed more since I have had ataxia.Can't always make it for a wee.That makes me laugh even more.When I eventually get there I can't go.Dignity has complely gone now.Got to laugh at myself.
Way to go Marie!...,been there, done & doing that...,ha! Laughter makes everything better! Hugs..., ;o)
hi I am so angry, my son who has ataxia, went down the street on sunday here in sydney to buy cigarettes for a friend on his battery operated bike, on the way back to his friends place his battery went dead. while he was trying to get this fixed to guys aged about 24yrs old ( my son is 38yrs) came up to him and asked if he had a smoke, my son Adam said no, they then said "yes you do, we can see them in your pocket" he told them they werent not his, then they knocked him off his bike which pinned him down took the cigarettes and walked off. If that wasnt bad enough while this was going on in a park mind you there was heaps of people sitting around and saw what happened also heard Adam calling out for help and NO-ONE came to give him assistance. To me those people are just as bad as the two animals that assaulted him, he felt so humiliated, angry and started to cry, he said he felt useless cause he couldnt fight back, my heart went out to him. What sort of a society do we live in when no one has empathy and understanding for people that have a physical impairment from a mother
I am so sorry for you and your son. Yes people are mean. And yes the people watching are just as bad. I know just how your son feels. We all do in one way or another. I'm not to keen on our society.
Couldn't have said it better myself, Lori and JC!
Maybe this word finding problems could and memory problems could come from a thyroid encephalopathy. Did you ever an EEG? Have ever been done first blood tests for thyroid functioning including antibodies? For the latter your General Practicioner could help you with a prescription, for the EEG - he will know the right place/doctor.
In any case, you (by mirror) or your wife should look into your eyes. Are there dilated vessels? Or - have you or did a relative of you ever have bleeding out of the nose/nosebleed/epistaxis? (i am working with a dictionnary as my mother dongue is not English but German. akita)
Good look! Akita
jason spencer said:
I have sc ataxia(hererity), progressive dysphasia and dysarthria which are a ffects from my ataxia,i've just been re tested using themount wilga high level explination, reading, writing and numercy skills, in 2007 i had mild difficulities and now i have moderate, this is what affects me the most. the phsiycle side of things i can control with excersize and a healthy diet, but the rest i cant do much about, i have bad comprehesson ,memory and grammer which has effected my life alot, because of this i have relie on people a lot , like filling in forms, making phone calls, writing on forums( so far this has taken me 1/2 hour) theres so much i want to say but i just cant find the words, and of course because of this i've made myself into a social outcast, i hate talking to people as i cant hold a sensible conversaton or i cant comprehend fully and also i cant stay focused , i dont talk on the phone only to people i know and so on. Thankfully i have great wife, who always helps me.
You also can undergo a special training for the bladder. But first of all i would go to the urologist. My urologist has detected a polyp at the exit of my urethra when i visited her recently. Such a formation probably could cause ataxic reactions and you always have to go to the toilet. My personal style has always been to go so often to the toilet or toilet-chair as my body demands, because i`ve read that it is unhealthy to hold the urin within the bladder, because the bladder looses its elasticity.
In my neighbourhood there lodges a psychologist who offers a special training for the bladder continence. This could be by Biofeedback, but i am avoiding this topic.
His homepage: http://www.psychnet.at/thomasweisz
Languages German, English, French, Hebrew, Hungarian
Best Wishes
Akita
I'm 36, heavily tattooed, with two bachelors degrees and I'm working on a MS. I have an unknown form of SCA. I can hide my ataxia symptoms most days, but sometimes I can barely walk or talk. I'm having trouble getting disability because I was cognitively tested a few years ago and they say I'm "too young, too smart, and too educated" to be disabled.
When I'm having a bad day, people look at me like I'm some sort of terrorist because they don't think that someone who looks like me could move like I do. It's not empathy OR sympathy. It's more like disgust. I feel rage when people look at me like this, because they don't know or care that I'm so much smarter than they are. And I know now that it really doesn't matter anymore because eventually I won't be able to express myself and no one will know what's inside of me.
I'm still pretty and I know I could just get married again and let someone take care of me, but I want to have an interesting career where I contribute to the world and do something worthwhile. I wish I had known about the ataxia when I was younger so I would have pushed myself harder when I had more time.
I try not to think about the ataxia too much, but sometimes I see older people and it makes me sad because I'm not sure I'll ever be old.