About me..

[Jennax]

Hello, my name is Jenna and I am 19. I have friedreich’s ataxia. This is my first ever post on this, so I thought I’d start by saying hello 😂

[Tiggywinkles]

Hi Jenna,

My name is Heather and also have FA. I am quite a bit older than you at 54, but was in my 40's before the first symptoms of ataxia started and I was 49 before it was specified as being Friedreich's Ataxia. How long have you had your diagnosis?

[Jennax in reply to Tiggywinkles]

My brother also had it but he was diagnosed at 15–16 and my mum noticed that I was having the same symptoms that were showing in my brother when I was 11 but I was officially diagnosed at 12 and then in a wheelchair at 16. Thank you for the reply, Heather🙂

[Tiggywinkles in reply to Jennax]

Hello again Jenna, I have read all the replies you have had to your post and your responses and I am so sorry to hear about your brother, that must have been very hard for you. I have an older sister, but she has not got FA, although when I was diagnosed she didn't want to be tested to find out if she had the genes. My Mum and Dad don't live near me and also don't really understand what things are like for me, luckily I have a very understanding partner, Richard, who has had to take most of things on here at home as I can no longer manage them. I can still walk - not far and with either a rollator or stick and Richard's arm - but it is getting harder. Keep in touch if you want to, it does help to 'off load' from time to time.xx

[Jennax in reply to Tiggywinkles]

I’d love to keep in touch, it’s really nice to know other people are going through similar things, as we know... life can be hard!! But still it’s good to know that others can be there as well to guide through. Thank you for your reply, I really do appreciate it; I can understand that it’s difficult to not have family members close and not really understand the condition. However, I’m really glad that you have an understanding partner. Remember you have others that do understand and are there for you! 🙂

[Happyfacexx]

Hi Jenna , welcome, you will find we are a friendly bunch and go ahead and ask any questions, I’ve found everyone full of helpful information. Have you found a support group to go to ? I haven’t got one that I can easily get to, so I go along to the MS group as the symptoms are so similar, I do chair yoga with them and walks ( some people in wheelchairs, some with walkers or sticks , I find it really nice to spend time with others who understand what it’s like

[Jennax in reply to Happyfacexx]

I did used to go to a support group but unfortunately we eventually stopped going. I agree it’s nice to spend time with others that understand however I have anxiety and it’s hard for me to try to push myself to do sociable things however I am trying to push my boundaries more. Thank you for the reply 🙂

[Happyfacexx in reply to Jennax]

Yes I understand, that makes things harder, but great that you’re trying to push yourself, I had to take my husband along to the first walk as I was quite anxious but now I’ve been once I will be able to go on my own. Good luck x

[Jennax in reply to Happyfacexx]

I don’t blame you haha and thank you x

[Litty]

Welcome - I have SCA1 x

[Jennax in reply to Litty]

Thank you for the reply. I am not too familiar with SCA1, can you please give me more information on it? X

[Litty in reply to Jennax]

All ataxias are so unfair, especially the hereditary thing,

Cerebellar ataxias like mine tend to kick in later adulthood, if lucky. (I am much older than you - 56!) Mine started in my mid 40s and I now use a rollator in the house and wheelchair when out!

Is there just you and your brother? I got ataxia off my Dad and have 2 sisters, one with and one without x

[Jennax in reply to Litty]

Yeah just me and my brother has friedreich’s as my parents have the gene for it, but unfortunately my brother passed away 9 months ago and I started to feel alone so my mum suggested to sign up for this. No one else, to my knowledge has ataxia in my family x

[Litty in reply to Jennax]

Oh that must have been so very hard for you all but especially you. I do not get on with my sister who has ataxia but when she does die it will be hard.

I understand fully too the sociable thing - I find it very hard but hopefully here will help? I really hope so xx

It really helps me hearing other’s problems and helps you to appreciate who/what you have??

The very best of luck anyway xx

[Jennax in reply to Litty]

Thank you and yes I hope it will help, and it does feel easier knowing that you aren’t alone with this. Also, the best of luck to you too!! Xx

[RCBrownMBE]

Hey Jenna,

I am Richard, am 42 and have FA. I’m a Trustee of AtaxiaUK and would like to be your friend!

[Jennax in reply to RCBrownMBE]

Hi Richard! Definitely!!

[RCBrownMBE in reply to Jennax]

Hi Jenna,

I have a background piece that I could email you. I'm sure you have lots of questions!

I'm [e-mail]

Richard

[Jennax in reply to RCBrownMBE]

I’m sorry but what is a background piece?

[RCBrownMBE in reply to Jennax]

It's a 1 page introduction to me with a photo which tells my story. I often use it in my work with Ataxia UK. Don't worry, I have copied it below.

Ataxia Case Study: Richard Brown

It was 1991. I was 14 when I was diagnosed with Friedreich’s Ataxia. My awkward and painful diagnosis was followed by very grim and highly medical prognosis. This shattering news was accompanied by paralysing fear, anger and deep denial and depression. I turned inwards and grieved for all the things I thought I would never do, things that are valued in our society: getting married, going to university, having a career, a family, driving a car, owning a home. I was so angry at everyone. My parents felt helpless and were wracked with guilt. My life had stopped, ended right there. I spiralled into grief. It was a very difficult time for me.

Still struggling to come to terms with my Ataxia, I met my future Wife five years later. A teenager herself, Helen had a great desire to succeed and importantly, saw no reason why I couldn’t too. As my mobility worsened, she saw something in me I could not. With Helen’s encouragement and support, I began studying History with the Open University. In 2000, I went on to take a degree in Modern History at Oxford Brookes University. I moved into university halls, relishing my new friends and freedom. The work was hard, but I had the full support of the University. I took part in an exchange to the University of Rhode Island in America. Having studied the Civil Rights movement, I gave a stirring speech to the Students’ Union about how it was the right and duty of everyone to follow their dreams.

I got married, graduated, started my first job and moved into our first home (the four most stressful things you can ever do!) in the Summer of 2002. I worked within progressively larger local authorities in Oxfordshire to promote disability access and equality. In 2006, We moved to Birmingham and were joined by our beloved pet, Tara. I started working for Birmingham City Council as Principal Equalities Officer. Our daughter, Isabella, was born in 2009, just before I started a management job in the housing department. This was the first time I had a job that had nothing to do with my experience as a disabled person. I decided to stop driving 2010. I loved the freedom and independence it had given me for the previous six years, but it was becoming increasingly tiring. Struggling with fatigue, I retired with a modest pension in 2012. I really enjoyed working, being part of something bigger than myself and setting a positive example to others.

Retirement was a big change for me. I went from being a dynamic and inspirational leader to being below our dog in the pecking order at home! Enjoying the free time, we embarked on an intensive training regime to make Tara my support dog and I returned to the Open University to pursue my love of Writing. I finally got involved Ataxia UK, helping to set up a Birmingham branch. I really enjoyed meeting others with ataxia, and was deeply touched by their courage in difficult circumstances.

We moved back to Oxfordshire in 2013. Our son, William, was born the following year, just after I completed the Birmingham Half-Marathon and a tandem skydive for Ataxia UK Keen to keep busy and give something back, I got fully engaged in volunteering. It is the most rewarding work I’ve ever done. I became a Trustee of Ataxia UK and of two local charities, Director of a community transport company, Governor at my Daughter’s Primary School, and an occasional volunteer at a local museum. The experience I have gained in each has fulfilled me, built my confidence and led to new contacts and opportunities. Earlier this year, I was nominated for the Shaw Trust Power List, an annual publication of the 100 most influential disabled people in the UK. I’m working to set up my own Access Consultancy. I audit buildings and services and deliver disability awareness training.

It has been with me for more than 25 years now, Ataxia feels more like an old adversary. Thankfully, there is much better information and support for people when they are diagnosed today. On bad days, I still feel angry, but I have had to accept that ataxia is part of me and has had a fundamental impact on my life. It has helped me find the strength I need to carry on fighting to follow my dreams. It has taught me that only we can determine the quality of our own lives.

[Jennax in reply to RCBrownMBE]

That is really inspiring. I felt the exact same and still do, I suffer with anxiety and depression now but I don’t get as angry as when I first got diagnosed. I am really happy that you followed your dreams and reached beyond. Thank you so much for telling me this. Would it be okay if I were to email you? For some sort of guidance. It’s fine if not as you have enough going on. Thank you again for that.

[RCBrownMBE in reply to Jennax]

Sure. You're welcome. Richard

[SamGH]

Hi😀 I have cerebellar ataxia unknown cause (idiopathic) I'm 39 allegedly

[Jennax in reply to SamGH]

Hello 🙂 when did you get diagnosed? If you don’t mind me asking

[SamGH]

About 14 years ago (by mistake/ chance).

[Jennax in reply to SamGH]

So you’ve lived with ataxia for awhile

[SamGH]

Yep. It got worse in the past 6 years though

[Jennax in reply to SamGH]

Do you use a wheelchair?

[SamGH]

Im resisting it. I do at airports and traveling. I don't have my own yet

[Jennax in reply to SamGH]

I understand, I do have one but when I walk I have to be holding someone

[SamGH]

Yea me too. Walking stick in one hand someone on other arm. Good look 😁

[Jennax in reply to SamGH]

Definitely 😂

[HarryB Administrator]

Hi Jennax

Are you a friend of Ataxia UK? We have a 16-30s group which you may find helpful. Here is a link to the website if you are interested...

ataxia16to30.org.uk/whats-i...

By the way I have an idiopathic cerebellar ataxia which was diagnosed when I was 15. I am 42 now.

Best wishes

Harriet

[HarryB Administrator in reply to HarryB]

PS. Welcome!

[Jennax in reply to HarryB]

Thank you, yes I am a part of the group!! I feel like reaching out is really helping me and I felt alone but now I understand that I’m not. Thanks again Harriet!

[Penny-92]

Hi Jenna

I'm afraid my post is a bit late but I've only just joined this. I also have FA - I was diagnosed when I was 11 and I'm now 26.

Hope you're getting on alright!

Lydia

[Jennax in reply to Penny-92]

Sorry Lydia, I haven’t been active on this as I forgot my password🙈 thank you for the response! It’s good to know that we aren’t actually alone through this, although it does sometimes feel that way!!

[medea]

Hello - pleased to virtually meet you! I have FA - I was diagnosed at 17. I am now absolutely ancient (59) . My advice to you is to keep busy and don't let other people do too much for you (easier said than done, I KNOW

[Jennax in reply to medea]

Nice to meet you virtually too!! I do try to be independent. As for the other question, I live in greater Manchester. Where do you live?

[medea]

I

[medea]

I was going to ask where you live?

[medea]

S.Wales