Hi, my names Courtney and I'm 20 years old. I've never actually done anything like this and try to talk to other people. But my disease is "familial episodic ataxia type 2". I was born with it. When I was a baby I ived in the ER I would have these attacks so much. I've been to state to state to see doctors to doctors. And they all basically tried to diagnose me with migranes, seizures, and other things. But we knew that wasn't what I had. I've never really had a social life. I was homebound a lot, then starting junior high I finally went to school half days, then in high school I went full days. This is really hard on a young kid who should be out with friends, driving, staying out late, and doing whatever.
So I joined this group to maybe have other people to talk too.
If you have any coping skills I can do please let me know cuz I'm out of coping skills.
You've been through a lot! I imagine it is VERY hard at your age, because I know it is hard at my age and I'm 37. The best advice I can give is don't give up. Keep surrounding yourself with those who understand and care, and even if you feel like being alone or that nobody understand - keep trying to reach out! :)
Dangit 3 imes i've lost post Welcome Courtney and hope having great day.
I'm a early starter like you being diagnosed at 5 years old im 28 now =0), though I don't know what type as medical files got lost and parent's were not as informed the way people would be today..
Try not to worry about social life I've found that it will come and go as you get older plus with disability late nights cause my symptoms to worsen even though I am a night owl *stems from me being a premature baby.*
Uhmn coping methods vary for everyone I've found for my worse shakey, dropsy "drunken" days joking and laughing about it helps me hugely as my family say ohhhhhhh she's been at the booze *I walk like a drunk on my worst ones* so we all crack up joking about my imaginary booze drinking.
Pace, Pace and Pacing helps hugely if it takes hours do it slow and steady, if it annoys someone tough, if need a break have one! I learnt the hard way that pushing myself to exaustion causes more problems I did this well into mid 20s my turning point was being hospitalised for pneumonia in 2009 I learnt If push myself beyond what I should it doesn't just affect my disability it affects my wellbeing too as exaustion in me leads to ill health,
Never doubt if could've done something better NEVER self doubt is soul destroying!
I agree with MissCake never give up no matter how hard things seem, you will get there even if it is slowwwwwwwww as a snail beleive in yourself. Us ataxians have to be patient with ourselves and maybe to teach others to be patient too. My fiance Randy is the most impatient person I've met but he has slowly learnt how to be more patient around me though he sometimes forgets and nags at me to be more careful. Usually give him the raised eyebrow show shakey hands lol.. He's also admitted he wishes he had my patience level =0P but doesn't understand it's taken most of my life to get to that point.
Sorry for long post..
Keep your chin up and be proud Courtney there will always be people here to share good days and bad days. Plus tons of advice and it's great way of sharing experience's and just general talking.
That's the hardesr part is not giving up.. I know some people might think well at least you've had your whole life dealing with this.. It's just so so hard.. I know my mom will always be there for me.. Just I want to feel like I can maybe talk to someone else as well.. I don't wanna always talk to my mom.. She's talked to me about going to see a counselor but I don't think I can.. It's hard for me to talk to strangers..My mom talked me to even get on this.. I mean my whole life has been nothin but tests, needles, doctors, etc.. I have dreamt of so so much that I can't do.. And it just really sucks and hurts..
MissCake2 said:
You've been through a lot! I imagine it is VERY hard at your age, because I know it is hard at my age and I'm 37. The best advice I can give is don't give up. Keep surrounding yourself with those who understand and care, and even if you feel like being alone or that nobody understand - keep trying to reach out! :)
Yeah I was actually born with what's wrong with me but when I was 10 they finally gave it a answer.. For me coping is really hard.. I don't know why.. But I'm just glad I finally found a place where people actually understand what I'm going through.. Most my family besides my mom still don't understand.. Most people when I say "I'm gettin sick" their like "what with the stomach virus I just had that it sucks".. Or something stupid like that.. Even though I've told them so many times what's wrong with me they just don't listen.. Like it sucks cuz when I get married I won't be able to have children of my own.. I'll have to adopt.. And just so many things I resint life for.. I could rant for a long time lol but 1. that wont do no good and 2. I need sleep.. So night.. And thanks for what you said..
evil emmy said:
Dangit 3 imes i've lost post Welcome Courtney and hope having great day.
I'm a early starter like you being diagnosed at 5 years old im 28 now =0), though I don't know what type as medical files got lost and parent's were not as informed the way people would be today..
Try not to worry about social life I've found that it will come and go as you get older plus with disability late nights cause my symptoms to worsen even though I am a night owl *stems from me being a premature baby.*
Uhmn coping methods vary for everyone I've found for my worse shakey, dropsy "drunken" days joking and laughing about it helps me hugely as my family say ohhhhhhh she's been at the booze *I walk like a drunk on my worst ones* so we all crack up joking about my imaginary booze drinking.
Pace, Pace and Pacing helps hugely if it takes hours do it slow and steady, if it annoys someone tough, if need a break have one! I learnt the hard way that pushing myself to exaustion causes more problems I did this well into mid 20s my turning point was being hospitalised for pneumonia in 2009 I learnt If push myself beyond what I should it doesn't just affect my disability it affects my wellbeing too as exaustion in me leads to ill health,
Never doubt if could've done something better NEVER self doubt is soul destroying!
I agree with MissCake never give up no matter how hard things seem, you will get there even if it is slowwwwwwwww as a snail beleive in yourself. Us ataxians have to be patient with ourselves and maybe to teach others to be patient too. My fiance Randy is the most impatient person I've met but he has slowly learnt how to be more patient around me though he sometimes forgets and nags at me to be more careful. Usually give him the raised eyebrow show shakey hands lol.. He's also admitted he wishes he had my patience level =0P but doesn't understand it's taken most of my life to get to that point.
Sorry for long post..
Keep your chin up and be proud Courtney there will always be people here to share good days and bad days. Plus tons of advice and it's great way of sharing experience's and just general talking.
Hi Courtney - I, like Michael, have late onset ataxia and can only 'try' to understand how you feel.
I do hope you will take your Mum's advice and try counselling - it might not help but... no harm in trying.
I had counselling for anxiety attacks and was very sceptical about it - when the course finished [NHS only pay for one course!!] I didnt feel any immediate benefit but.. on reflection, it has helped me a lot and I rarely get anxiety attacks now and.. when I do get them, I dont panic and they soon subside.
I have down loaded self hypnosis 'tapes' onto my MP PLAYER and have positive thinking CD's that I listen to occasionally but... the greatest benefit to me is the 'friendship' from this and Ataxia UK forum.
Hope you are doing better now! My almost three year old has just been diagnosed with EA2 Type 2. Nor my husband or I have this gene variation. His case was de novo. So far he only has balance issues. Do you always have balance issues or are their days where you are completely fine? What are the episodes like? Have you tried acetazolamide? Did it work for you?
Sorry for all the questions but I’m just so nervous.
Hi. Just to say, my own ataxia appears to be Episodic. Although I’m challenged by basic symptoms 24/7 there is a pattern of them worsening, and then picking up again. As an adult, I’ve had one seizure and episodes of deja vu.
Most of my current problems are Vestibular, although general ataxia symptoms are worsening. During my childhood, balance was unaffected but I recall possible ‘absences’.
Recently my Neurologist asked me to try Acetazolamide, she thought it might help with BPPV, a type of vertigo. In my case, it worsened symptoms of ‘pins and needles’ and I find I cannot tolerate the recommended dose. But, there are good reports of this medication when being prescribed for children coping with epileptic symptoms.
yey!! that’s great! congratulations! I have read that mutations in CACANA1A can cause cognitive impairments. Which I hope will not be the case for my son. Do you feel that the episodes are becoming worse as you age? Do you know if in some cases they never develop the episodic ataxia or it becomes better?
On my son they found a new variant that is not known to cause EA2, but since he has low muscle tone and a bit of balance issue they believe its pathogenic. Also because its a de novo mutation and my husband and I don’t carry it. He had an mri at 18 months of spine and brain and everything was fine.
Hopefully we will have an answer by Wednesday
It’s a fact, cognition can be affected but most of us are still ‘on the ball’ Although I have to confess to 'senior moments
It’s hard to say whether coping now after many years of symptoms, is any worse than coping with the onset of confusing, disorientating, symptoms, it’s just different. The thing is, what you have to remember is, young children grow up to accept things as the norm. They deal with things totally differently because that’s all they know. I’m sure you’ll give encouragement and support no matter what And that’s what matters most xB
Hi. Just to say, my own ataxia appears to be Episodic. Although I’m challenged by basic symptoms 24/7 there is a pattern of them worsening, and then picking up again. As an adult, I’ve had one seizure and episodes of deja vu.
). I ended up going to college as a mature student (not due to ataxia), and yes I got diplomas 