Ataxia UK
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Ataxia changed my life for the better ! (Short Life Story)

Obviously it's not an easy hearing how your life's going to change. I'm writing this today to show how I feel and give strength to everyone that is going through a tough time. I'm not disappointed with myself, this is life I wasn't expecting this but it is what it is. Even before I was ill, I would challenge myself so this is no different.

This happens but I think we're all trying at the end of the day, I think that's a big thing. I think we are living a life where we don't know what it feels like to be disliked unless we are liked- and I have definitely had a lot of dislike thrown at me in my life but also I have felt a lot of love from the real people.

This is what this sight is for I think, having positive influence on others and that's what I am trying to do... I think it's a gift that God gave me to express how I feel and to help others. Even though I have a lot of things in my life I hate. There is one thing that I like and happy about- i get to see who's real around me. When I was ill, a lot of friends I thought I would have forever left me, people hated on me which made me leave school. I got to see: who really loves me; who really cares about me and who would have my back whether I have an Illness or I don't...

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Totally get/ understand where you are coming from.I too was totally mortified when I wàs diagnosed with the condition and what I found hard was that is not a common condition ( was so sick of getting asked whats that) the fact my GP didnt know much about the condition frustrad me.I am 40 so independent,got 2 kids and worked full time as a carer ( care home). Within 4 yrs off getting diagnosed have had to give up work,was hard and soul destroyin but accepted that Ì have ataxia,not ataxias got me.What I am saying is its ok to feel the way you do,just beleive when I say it does get better just surround yourself with people who love and care.Acceptance is the key word keep smiling and vent on here if it makes you feel better...we all undetstand 😀

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Thanks for reading my short story; I appreciate your positive thinking . I understand how tough things maybe as you have kids but I hope the best for you. I try to keep happy at all times but it is getting harder when you feel all the support leave your side, it's hard for me to fight for my life everyday (challenging myself everyday) at a very young age; I really wanted to do more in life. But, no excuses. :D

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Dear illerpath,

Congratulations you are so wise. I am also a believer that when the going gets tough the tough get going. I am 63 and worked until 60 and was pushed out my job because it was ambarrassing to have me wobbling around, although they made a lot of excuses to hide the real reason. Today I am so glad for being at home. I have time to do the things I like, I have time for my grandchildren and have found out who my friends are and was surprised to find out that the not the ones I thought they were. I think this forum is great as a source of knowledge and encouragement. It is so nice to be able to query something and get so many replies and such soundd advice. Ataxia being rare, there is not many people who are aware of it. Keep being positive and take this as a challange. Everyone has challanges in life and this yours.

Best wishes

Isabel

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You are right thank you! This site is amazing it brings me joy giving out my story and lots of people reading it. I thought no one would reply but it is amazing, all the motivation. I hope everything goes well for you, a big thank you too.

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Everyone is very different. I have SCA1 too but it did not start until my 40s, I am mid-fifties. It is not fair that you have it so young but I am so glad that SCA1 does not effect you mentally.

After I was tested and knew I had it coming I thought I needed to get on and do what was my passion - try to find yours. Mine is art so I did a foundation then an art and design degree. I discovered that I really enjoy making ceramics.

I am not a talker but therapy has really helped many of my family.

Some of my friends cannot cope but many do and I have made some new ones. It is their problem!

Good luck x

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Thank you for your advice ! I appreciate your time; I was in to rapping but my passion for it is gone as my voice is deteriorating every time I hear myself. After one verse my voice quits, I sound like a chipmunk, who wants to hear that?

I am actually affected mentally, I always feel mentally weak but not always physically. I did get diagnosed at 15 now I'm 16 although the symptoms were there at 12, I never thought anything of them.

I think with just 4 years with the disease, if I wasn't so mentally weak and anxious maybe I could do more than I'm doing now.

Thanks for listening to me, I am happy I got a response from you and some very good advice, I've seen some of your positive replies on a lot of posts, so I could say that I'm a fan :p .

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I am glad it helped a bit! You sound lovely and hopefully just sounding off to us lot will help.

My speech and singing are both dreadful but you do need to practise so I read what I am writing, answer the radio and (not nice for others) I sing along with my iPod badly.

I know nothing about music and rapping but I did have a play years ago making (badly) music on GarageBand. You MIGHT find an App to buy to try making and see if it hits the mark a bit? x

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Yes...i know that app but I cannot use it. I think I didn't send my last reply. But I have been tfeeling like shit for the last week; I'm slowly getting my groove back and then I will assess things and see if rapping is really for me.

I did it for a while on Sound Cloud, I will publish them soon for everyone to see. I want to have the passion I used to have but all the factors have put me down: As I am Muslim I had a few of them saying it's bad for the religion and call me a sinner with everything I said; people were mocking me and some people gave me hate.

I am learning to deal with that I know a lot of rappers go through that.

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Hope you start feeling much better very soon.

Lol - see I know nothing about music (not my thing) but you are educating me. I found Sound Cloud and you!! I like it - thank you. TRY to ignore horrid people x

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Ok I will try... Thanks for listening that's amazing that you actually found me, what is your opinion do you think that I should continue?

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OH YES DEFINITELY - if up to it maybe post a link x

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I did post up a link right now... I hope people actually listen, this is the link I put up - does it work?

soundcloud.com/user-2983499...

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Yes it works! Who is the girl? x

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Its actually a deep deep story... I gave this girl 3 years... I got her at 12 years old till 15. 15 is when I got diagnosed... I told her and from then everything was starting to fall apart. She didn't want me... she couldn't deal with this she told me and we broke up... She wanted the best and sadly I couldnt give her that... I didn't wanna throw things away bcz it was 3 years. I was doing stuff was not so severe (the ataxia) I tried everything so we could try again. She came to me again and said some very mean stuff, told me she didn't love me and that she was seeing someone else. One thing led to another, I was really angry... I made a mistake I regret forever. I knocked her out... cold her eye was bruised :'( , I picked her up from the arms. I soon told her everything... she walked away and I went after, I wanted to help. She shut me down again and said my friend is coming... from that day she never messaged me or called me , I was paging her for a while but then I stopped because she never answered and I could see she no longer wanted me :'( . I always think about her... cuz I ruined things and made such a silly mistake. :'(

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We all make mistakes when it comes to the heart - I am afraid! Plus I do believe that you will meet several potential partners during your lifetime.

So very sorry but we never know if and when the right person comes along. I am lucky my husband stayed with me but some partners leave. Both my children never even had boy/girlfriends for all their school/college, job training years but both this year are engaged this year (late 20s!). Ataxia or potential ataxia can be a problem for some but not others. One found the right person on the internet. Good luck x

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I did have a chance when I wasn't ill. She was the only girl I had real love for... I keep thinking what would any girl want in a guy like me, If i gave a girl 3 years and she still left me... What's the point of even trying?

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TRY not to give-up hoping - It is harder but there are people out there happy to take us on x rare but some x

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Maybe for you... not for me. You don't know my real personality... I tried to hide it on here that's why I'm trying to be nice to everyone. All I can say is that it led to my actions of smashing that girl. It's also the reason why I lost so many friends... but a few friends know that's how I am, they don't want to accept it but they are forced to...

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Thank you for being so honest.

I do not want to lecture you (annoying) but over the years I have learnt that regardless of whether you have ataxia to deal with everyone has varying degrees of sanity to deal with. your friends who have stuck with you must see something good. We all make mistakes along the way which we can learn from.

Trying for this forum is a good sign but you are in a bad place so just need time x

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I guess your right...I need some more time just to get used to life with Ataxia.

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Everyone is different - I took about a year to accept the news I had it coming. I still have regular cries (my way of coping) x

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Yes we all are different but we all live in quite the same life and it is ok to cry let things out- never feel bad about it.

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X

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Happy for you guys but being a mother of a young ataxia adult is heartbreaking. All mainstream friends and family disappeared and the only people I vaguely connect are a couple of other mums like me, wouldn't go as far as calling them friends.

So we are sailing alone on the sea of life...

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Thanks for your reply! I understand what you are saying, people only love you when they see that you are doing good so they can take your spotlight.

A lot of people 'pretend' they are there but really they aren't. I totally understand you...

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I appreciate your story. It’s important to do your best to maintain a positive attitude, in spite of illness, in order to cope well. I have had Cerebellar Ataxia my whole life, but it was mild, and was due to a congenital artery malformation in the brain, that wasn’t diagnosed until I was in my 30’s. I was clumsy, and walked a little funny sometimes, all my life, it seems. I’ve never had good balance. I was misdiagnosed with a possible MS diagnosis for about 5 years, before the AVM was found. Over the years it has gotten worse, and symptoms have gotten worse. Because of the location, it is inoperable. Doctors keep a close watch on my Ataxia, and I’m on several medicines. Now that I’m in my 70’s, I’m still around, but I’ve also been diagnosed with Parkinson’s Disease, so that complicates things a bit. Still, at my age, I challenge myself each day and try to be positive. Best wishes to you!

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Thanks for your amazing reply! I wish the best for you as well... You have been through a massive journey it's amazing to see that no negativity surrounds you.

All of your life I have no idea what you have been through, you are a real soldier and so is everyone on here.

For me the symptoms started at 12 so I know how difficult it is at a young age dealing with the negativity around you.

Hope everything goes well for you.

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