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Ataxia Support Network

It's getting to me


#1

I just turned 29 and have had ataxia since I was six. I have tried to be strong and go about my life, though I can’t walk, my physiotherapist has taught me to crawl to get around. I have been thinking over the past couple of days and it’s just got me so depressed, now (more than ever) I’m relizing that I’m never gonna have a normal life.


#2

Hi Breezey :slight_smile:
I’m a bit confused because I saw your first post was as ‘stubborn’ :slight_smile:

But that doesn’t matter :slight_smile: I hope you’re feeling more on track at the moment :slight_smile:

I’ve been plagued by double vision and nystagmus for years, and I have a friend who appears to have something akin to ‘ocular motor movement apraxia’. My experience of eye problems has occasionally left me feeling very dispirited to say the least, I get a very disoriented sensation coupled with balance problems.

I’ve been googling, trying to find people coping with the same challenge, who you could make contact with :slight_smile:

www.patientslikeme.com list all kinds of conditions, one of them is ‘ocular motor movement apraxia’. They have a forum, you may be able to find useful information :slight_smile:

It’s just occurred to me, perhaps your eye movements make it difficult to focus online? If I can help you further, please let me know :slight_smile: xB


#3

Yeah, I’m sorry about the confusion Beryl I switched nicknames.
I was just having an “off day” but it’s getting better now, thanks!


#4

Sometimes it's just hard to stay positive. I know I have days that the ataxia just sucks and I hate having it. I would love to wear my high heels again or even just roller skate (I used to ballroom dance on my skates) and now I can't even stand on them.


#5

Kay, I didn’t even know it was possible to Ballroom dance on roller skates :slight_smile: I’m sure I ruined my feet wearing high heels :frowning: At one time I didn’t own a pair of flat shoes. Now, for practicality, I mostly wear trousers and flat boots, it’s not an elegant look :slight_smile:

I’d like to lose weight, and wear some nice floaty summer dresses and strappy sandals :)xB


#6

I gave up on losing weight but I still like to wear those nice shoes. I have found that I can wear 1-1 1/2" heel on my dress shoe and if I find the right one it feels like I'm wearing flat shoes. You also have to make sure the shoe doesn't slip off when you pick up your foot or wear good support around the ankle.

Unfortunately, I had to give up the skating in my mid 20's.


#7

I will be praying for you all to keep strong and believe in god