new to ataxia

my name is jack, i am 18 years old and have ataxia which quite frankly is rubbish (as you all know) and has ruined my life thus far, it has stopped me from becoming a chef like i wanted to do and it also ruined my second attempt to educate myself ( more the collages fault than mine bu what can you do) however i am going to be starting a wonderful course in September,i am determined to get an education. i was only told that i had ataxia last year and am struggling to come to terms with it... i was also told i was born with it which explains soooooo much... i have got depression and anxiety and tonight is the lowest ive felt in a long time and writing on here is helping... i guess i would like to know that im not alone in this and there are others who understand what is happening to me.

12 Replies

oldest • newest
  • Hi

    Thank you for your post. i hope you have been able to get some sleep and that you are feeling a bit better by the time you read this.

    You are most certainly not alone and there are plenty of people who understand exactly what you are going through. I was diagnosed with ataxia when I was 15 and although I am now 40 I totally remember how scared, confused and bewildered I was.

    Ataxia UK run a 16-30s group. To join the group, email communications@ataxia.org.uk. There is also a closed Facebook page for the group. The link to the website is ataxia16to30.org.uk. Please look at it. I hope you find this helpful - I know many do.

    Best wishes

    Harriet

  • Hey Jack, I'm not 18 and wasn't diagnosed til much older but really just wanted to say I am trying to understand what you're feeling just now and tbh I take my hat off to you! There are many fit and healthy young people out there who let their education go and you have your difficulties but you also have the determination and willpower to stand up for yourself and give it your best shot! Well done mate! You will succeed because attitude is the most important thing and you have got the right one and the strength of mind to do well! Yes ataxia is crap and it will pose challenges but its not the be all and end all. Join the group that HarryB mentions so you can get the sort of support from your peers that you need and know that there are people here that can help and do understand. Being 18 is a challenge in itself and lots of people your age will have similar feelings to the ones you're having, most likely not all you're feeling just now is about the ataxia, being young is hard ( I wouldn't go back!) but it will pass - honest and sorry 'cause I must sound soooo old! Keep doing what you're doing, you're going to succeed because you have guts as well as ataxia and you're obviously a bright guy! Hope you're feeling better this morning!

  • Hi jack,

    First thing you should know is your not alone! As the others have said - join the 16-30's group as this may give you an initial sense of belonging to a group of 'people like me' and reduce the sense of isolation. Also, if education is your goal, there will be people in this group who have and are accessing education with support and will be able to guide you in the right direction. You are young with a new diagnosis which is difficult so I hope you are getting support and counselling to deal with this - if not speak to your gp as this is an important time for you.

    As someone said in their post a few months ago "I have ataxia, it does not have me" which is a strong message.

    Good luck!

  • Hi Jack,

    Thank you for sharing your story with us at what sounds like a difficult time. I'm Steph, the Communications Officer at Ataxia UK who facilitates the 16-30's group. I know a few people have mentioned it already, so I'll keep this short! But being a part of a community who are in a similar stage of life with the same concerns and questions has done wonders for many of our members; forming friendships with one another has helped to reduce their feelings of isolation immensely, and improved their self-esteem and anxiety.

    We have a close-knit Facebook group where new members are warmly welcomed and supported; our 16-30's blog - written by members, for members - gives emotional as well as practical support; if there is enough interest from the group to attend, we will also be holding a summer event dedicated to 16-30's members, through which we will share advice, information and a good time!

    I very much recommend joining the Facebook group and saying hello - they're a wonderful bunch who I very much enjoy working with. I believe doing so will greatly help.

    As Harriet says, you can email me at communications@ataxia.org.uk to inquire further, and you can read about the upcoming event here: ataxia16to30.org.uk/Event/s...

    I wish you all the best Jack, and hope to hear from you!

    Steph

  • It is early days but you are so not alone!

    It is totally unfair but you have to do what you can for as long as you can. This is your life and even though it is not brilliant it could be worse.

    I was lucky because when I found out I had ataxia coming and my kids were old enough and did not need me so much as a mum I decided I needed to go back to college and do what I really enjoyed. My thing was art. I started with a foundation and then discovered ceramics. I cannot throw on a wheel so I shape using bubble wrap and use molds for shaping. Plus I need more help filling my kiln now a days but it is so good for me. So never give up and adapt stuff if you need to.

    Good luck : )

  • Dear Jack, Although I'm much, much, much older (63) then you...,ha!...,I DEFINITLY understand how frustrating and challenging ataxia is. I've had ataxia for about 20 years (although just diagnosed 13 years ago). I really admire you and your tenacity to go for your goal of an education! Kudos to you!!! This site is always a good place to 'vent', as others on here understand and are very supportive! You are NOT alone in your journey!!! Try to concentrate on what you can still do and relish in that! My best to you..., ;o)

  • Hi jack

    I'm leanne I was diagnosed when I was 19 so I know exactly how you feel. I had to give my job up working at the hospital.keep at it enjoy your course x

  • thank you all for your touching comments i am feeling a lot better for reading them

  • We are here for you, Jack! This support group is so helpful to me. Ataxia is not easy to deal with, so to have it at your age can be particularly overwhelming! I've had to deal with this for many years, and I've learned to focus on what I can do, not what has become difficult for me to do. Each day is a new day and, even though I have to live with Ataxia, it is not going to take over my life, and so I live each day to it's fullest! I appreciate smelling the flowers and take the time to enjoy and cherish family moments. Best wishes to you, Jack!

  • thank you very much, its so nice to hear from others who understand

  • Hi Jack

    You've had enough advice so I just want to say hi, and best wishes.

  • thank you and hello

You may also like...