Ataxia UK
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Help me please!

I'm so happy that I found this site! It's hard hearing these stories. I am here for one thing someone could help me with. I was diagnosed with SCA1 at 15, now I am 16. Although symptoms kicked in at 12 . I still feel like I am physically there, I am still walking on my feet. But I am mentally weak and I want that to go away. I want to be mentally strong again. Someone help me I don't feel like living...

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Hi

Firstly don’t give hope things do get better,although this takes time and patience but it does work out try getting some Physo

And help we’re ever you can

There’s always people on this site who can help and talk to you

Your not alone

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Thanks for your response! It is amazing to know that there are people willing to help me. I will try to do the things you have advised.

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agree with art69,I find the best medicine is to talk and this site offers ears and advice.It is a very frustrating condition but does get easier.Physio has helped me both physically and emotionally...Takè Care😀

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Thank you for the answer! I will definitely try some physio. I did give up on it before as I didn't find any unique improvements. If it has helped you then it should help me. I am up beat to give it another go.

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Dear Illerpath,

I'm so very sorry to hear how you're feeling.

Ataxia UK run a Facebook group and social events for young people with ataxia from all across the UK for this very reason: you, and they, are not alone. I have watched the group become great friends over time; they are welcoming, fun and warm. If you would like to get in touch with anyone your age who understands entirely what you're going through, please drop me an email anytime and I'll put you in touch: communications@ataxia.org.uk.

All the best to you,

Stephanie

Communications Officer at Ataxia UK

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Thanks for your time! I also wish the best for you. I am very graceful for the people here. I finally feel like I am not lonely anymore. My facebook is currently undergoing some maintenance as soon as it is working again I will drop you an email. But in the mean time I will send you an email so you know my email. If you have any advice or anything you think that would help me, feel free to email me.

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Hi illerpath

Thank you for your post and welcome to this forum.

I was diagnosed with ataxia (cause unknown) when I was 15. I am 41 now. Everyone diagnosed with ataxia, whatever type, has been where you are now. You have recently received life-changing news and you must allow yourself time to adjust and get your head around it. You will start to feel mentally stronger at some point but don’t force it. Believe it or not what you are feeling just now is entirely normal and unfortunately you need to go through it in order to get stronger. But it will ease and you will feel stronger.

The advise above is very sound. I have had bits and bobs of physio over the years but have only recently (in the last couple of years) done any regular exercise. I do Pilates every 2-3 days and it has helped enormously, both physically and mentally. My one regret is that I didn’t do it earlier.

And speaking to other people who know what you are going through and have similar challenges is invaluable. Please do act on Stephanie’s information and remember this forum is always here. You are never alone.

Best wishes

Harriet

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Thank you for the response! It is very amazing that you can give me some advice at your age and how long you have had the illness for. It must be a big achievement for you, I hope everything goes well for you as well. Everyone here is very kind and I look forward to getting answers I've never gotten before.

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As the others have said, you are not alone. I know the internet is a poor place to get comfort, but rest assured others are thinking of you and have you in their prayers! I, too, have SCA1, but I am 51. I can only begin to imagine how difficult it is to come to terms with the illness as a teenager.

Can you tell us anything about what your doctors are saying and doing for you right now? Do you know your parent that had SCA1?

Here is a video I recommend you watch. It is not about SCA, but I believe the idea it offers is relevant to many neurological disorders including SCA1. Basically it says that even though there is no "cure", you as a patient can try to help yourself using all the tools you can including exercise, diet, therapy, medicines, and supplements, but it is vital that you get a professional doctor involved to help you set up your own "routine". Most importantly know that you are never alone. I think connecting with a youth group in your area that has others with ataxia is a fabulous idea!

youtube.com/watch?time_cont...

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Thank you for your response! I have told you a bit more about my illness on the other post. I will write everything on a new post which will be up asap. I wish the best for you with this illness. Thanks for all the information.

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Hey illerpath. The thing with ataxia is it sucks and you have to work to stay positive. I've had some pretty dark days myself. Staying saying happy means doing things you like and cutting out things that make you unhappy so try and cut down on things that you find hard and try and find ways to make life easier for yourself.

I got referred to a centre they put me on a course of c bt or cognitive behavioural therapy this helped me and it sounds scary but actually it's just telling you to focus on the things that you like. Ask your GP about it I didn't get referred until after a suicidal episode and that's too late .

Best of luck to you

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Thank you for your response! I appreciate your advice, I also wish the best for you. I'm not trying to prove you wrong buh how do I stop the stuff I hate if it helps me? I mean I hate having baths I stopped having it so frequently and I smelt really really bad, but now I'm doing it frequently, even though it's hard. Everyone says the same thing to me: "Do what makes you happy". But what if nothing makes me happy. I see all these people doing stuff to make themselves happy but it don't make me happy. My happiness is different from the normal community which I have found to be true. Many thanks to you, I will try to get in contact with my GP.

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Ask for help. Once you are on a downward spiral of thoughts it's hard to escape. The bravest part is asking for help - try your gp

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I have spoken to my personal GP when i was referred to her after the diagnosis. I wanted help from people that are actually living the life-doctors talk about. The people on this website know more about Ataxia as they are experiencing it- so i rather hear an answer from their point of view. I was diagnosed at age 15, now I'm 16- a lot of people have had more than 4 years with this disease, (I had symptoms at 12 but didn't think to much of them). So, the people here have been there-done that- advising me is the help I wanted :D.

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Hey illerpath. The thing with ataxia is it sucks and you have to work to stay positive. I've had some pretty dark days myself. Staying saying happy means doing things you like and cutting out things that make you unhappy so try and cut down on things that you find hard and try and find ways to make life easier for yourself.

I got referred to a centre they put me on a course of c bt or cognitive behavioural therapy this helped me and it sounds scary but actually it's just telling you to focus on the things that you like. Ask your GP about it I didn't get referred until after a suicidal episode and that's too late .

Best of luck to you

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Hi illerpath. I know things look bleak for you but try to stay positive. It can be hard to accept your condition. My advice would be take each day as it comes. Learn your limitations to what you can do and take things slow. I live alone, cant move around without crutches or a stick, have sporadic tremors, etc. Housework takes me days (1 bed bungalow) but there is a sense of achievement, when I cook I make enough for 2/3 meals and freeze them for days I cant cook.

Try and stay positive and smile for yourself when you do something. Have you any hobbies? If not why not start one to keep busy? Where do you live?, is there a support group near to you? Keep in touch, there are many people here to offer help and advice.

Finally, keep up your physio. My therapist gave me some exercise sheets for some I do at home and although it is no cure it helps. Again, do what you can when you can. Most important though is be safe.

GOOD LUCK

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Thanks for the response! I also wish the best for you and thing to get easier. I can tell you that I don't know of any other kid that has Ataxia where I live and my doctor preaches the same thing to me. I live in Southampton, which is close to London. I was a rapper but my voice has deteriorated as time has passed. I have posted some tracks on Soundcloud. Now I have no hobbies, nothing to make me happy maybe this sight could make me happy, I am trying everything but no success.

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Hi, I am sorry that you are feeling so down at the moment, I am a mum of three and my youngest is the same age as you. My children have chosen not to be tested at the moment but understand that there is a 50% chance that any/all of them might have SCA 1. We both have a hereditary condition and if you live with your birth parents one of them must have the condition. You are very young and sound very isolated which must be dreadful for someone of your age. There are lots of things you can do to improve your situation and having things to look forward to makes a huge difference. Are you still at school? If so there will be people there you can talk to or maybe ask at your local Surgery if they have a list of clubs that you could consider. Finally, you have done really well finding this site, not only can other people give you support but you might be able to find a group of young Ataxians near you that you could join. Hope everything goes well.

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Thank you for an answer and your time! At the moment I am at home but a college has accepted me, a college called Treloars which is for disabled students such as myself. The reason I feel so isolated is because ever since I had Ataxia, people would pick on me and no one wants to be my friend anymore. I had to deal with all the bullying and hate at this age, luckily I still have some very close friends. Ataxia has not been a problem in my family: My mother doesn't have it, my brothers, my sisters, my dad and no one in the family. The illness is unlikely at a young age but for me there was a cause which I do not feel comfortable speaking on but in time when my trust grows, I definitely will. At the moment I have really bad trust issues just because of all the negativity and hate that circled me as a teenager. I hope that's understandable...

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Have something to look forward to.

The longevity of some people on this forum is enlightening. To see your life ahead with SCA 1 could be disheartening but try to accept this is as good as it is going to get.

From the physios, develop and learn exercises to do at home. Your attending a college is great. This challenge will keep every thing working.

When you leave college attend a gym, for weekly excursion and exercises.

No one knows your answers, so take advice from others, and do it yourself. What I mean is listen to what others say, mull it over and then do what you think is best for you, Challenge yourself, then if that action is too demanding, you will know not to do it again. Several things I now do not do.

Having something people can see will stop any hurtful comments. Using a walker or stick will enlist help rather than hurt. I asked an off duty policemen to take my name and address from my Blue Badge. He apologised for being such a nuisance. And there are other occasions where I have played "the disabled card". Pregnant women until they have an infant in a pram, are they over weight or carrying a child?

Have you stopped rapping completely? Have you tried to find someone to speak your words?

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Thanks for that amazing advice! I wish all the best for you. Some of my tracks are on Sound Cloud i am going to start rapping again. I want to speak the words for myself it was my dream but now I have no passion. I have all the equipment but my mind keeps telling me I'm not able and it's not for me. Even when I'm walking my mind keeps telling me stuff like 'There's a long way you'll never make it it's too long... I have this dips in energy- I give myself time to reset and start walking again. I have terrible anxiety because of how people treated me as a teenager. Older people might have a few people that are discriminating to them. But I feel like the whole school was against me: people stared at me; laughed at me; back chatted me and some of them would even chuck stones at me because I stood up to them and gave them a piece of my mind. I cannot even step out my house that's how shook up they got me- I can't deal with the hate again. This college is in a different area and when I went to visit, I actually made friends again and everyone was so nice- i just felt a bit low because why do we all have to be like this. But... it is what it is...

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