fed up: I,m new here, I have sca2 and feeling... - AMN EASIER


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fed up

auntiesally profile image

I,m new here, I have sca2 and feeling very angry at the things I cannot do, I cant stand for more than a minute, feel as if I get in the way of others, generally fed up,

8 Replies

Hello auntiesally , yes I can understand how you feel I also get fed up.Things I could do , now I can’t do , Simple tasks are now difficult , life is a struggle.

The only way , is to concentrate and try to enjoy what you can do.

I can’t get out now without my husbands help . Trying to get into a taxi to get the second jab was most difficult , then trying to walk with a stick and hanging on to my husband , must have looked so funny , was so bent over.

The people were so kind in putting a wheel chair by the door. . My husband pushed me around getting the jab. Then getting the taxi back home, The taxi man was also helping to get me out of the taxi.

People are very kind in helping when needed.

Take care , you have to see humour in life to survive, but it’s still hard....

auntiesally profile image
auntiesally in reply to Plain

thanks Plain, just a bad day yesterday, on the bright side, I came down the stairs backwards this morning, thought I'd try it after reading it helps................................yahooooooo, first time I have walked down the stairs in a year, really has boosted me! Godd new that you have had your 2nd vaccine, had mine as well, what a fantastic feeling isnt it. Do you take any medication at all for the Ataxia?Taxis are a bit of a problem, some are to high (hackney cabs) others too low! Maybe the way forward is going backwards!!!!!!!!!!!!!!!!!!!!!!

Plain profile image
Plain in reply to auntiesally

Well done you, for finding a solution . Take care ......

Plain profile image
Plain in reply to auntiesally

No I don’t take any medication for Ataxia .......

Hi, your post popped up on my news and I went on to find out what sca2 is. I suffer from AMN with similar symptoms. Not sure if you look on the internet very much but I just looked on the Rare Disease site that I use and found it very interesting reading. You may well know about this, so sorry if I’m interfering. The web page is rarediseases.info.nih.gov/d...


auntiesally profile image
auntiesally in reply to Hillary

thanks Hillary

I have been dealing with AMN since 1995. There have been many challanges and loss of functionality for me, too.

Frustration is a big part of it. I have been in a wheelchair since 2012.

The key for me was to accept the challenges, find ways to keep to deal with them, and try to stay as self supporting as possible. Lots of time on the internet seeing how other disabled people deal with everyday things.

I stay in shape the best I can. I get around and drive with hand controls.

I had a bout with depression and got treatment.

You have to find a way to accept life is going to be different and try not to get swallowed up by your emotions. It takes time you can get through this

Hi Auntiesally, It's a new life when you have been able-bodied and then can't walk and do things that you used to do. Physically we learn new skills and learn to accept help. Emotionally we also learn. Now we are different from the able-bodied people, and conduct our lives at a different pace, with a different perspective than the people around us. Keep believing in yourself. This is a journey in learning patience! Nan

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