If you, or someone you know, has recently been diagnosed with ataxia, you may like to do some of the following:

  • Look at the different sections of the website that seem to relate to the ataxia that affects you
  • Contact the Ataxia UK Helpline to find out more about your, your family member’s or friend’s ataxia. The Helpline tel no is: 0845 644 0606. The Helpline can give you lots of advice and guidance, for example it may assist you in getting hold of the best information possible, can advise you on the medical processes you may experience or generally point you in the direction you need.
  • Get the support you are entitled to. The Helpline may be able to help you, if you're not sure what benefits or social services help you might be able to get.
  • Contact your local Branch or support group. These groups, composed of people who have ataxia and family members and friends of people who have ataxia, share with one another their experience of dealing with ataxia and get some of the latest information about ataxia. There is also a Virtual Support Group – for people who prefer to get support online – and an online forum of people with and interested in ataxia, Health Unlocked.
  • Become a Friend of Ataxia UK and receive a quarterly magazine and updates LINK
  • Attend an All About Ataxia workshop where you will meet and share with others who have had a recent diagnosis of ataxia as well as getting some of the important information about ataxia that it is useful to be given in the months and years after a diagnosis.

Some ataxias are ‘late onset’ (symptoms only start to appear after you are 40 years old), children get other ataxias. It is for this reason that we have included quotes from adults with ataxia and from some parents of children with ataxia and what they wanted to say to other parents who’d just found out their child has ataxia.

 
Your Advice:

It took me around a year to come to terms with my diagnosis. During that time I wanted to know and understand more and more about the condition, I was constantly thinking about it and it seemed as if an ‘ataxian cloud’ was hanging over me. However, after a period of time I integrated ataxia into my life as a whole and it no longer plays the central role that it once did; although I still have ataxia, a clear idea of the strategies that help me manage my ataxia has helped me to realise that there is much more to life after diagnosis.
Tim, 61, Cerebellar ataxia

 

Take one day at a time, don't look too far ahead, everyone is different, progression happens slowly so your child will not change overnight.
Sheila’s son was diagnosed with Friedreich’s ataxia (FA) at the age of 9 and is now 24

 

Get support for yourself from wherever you can (as well as the child). Find someone who is good at listening that you can offload to if needed.
Alison’s daughter was diagnosed with FA last year and is currently 11 years old

 

Encourage your child to remain as independent as possible. Get referral to neurology department. Push medical staff for what you feel is required.
Pauline’s daughter was diagnosed with Cerebellar ataxia at the age of 2 and is now 6 years old

 

Don't look too far into the future. The ataxia may progress slower/quicker than the information given. Have a positive attitude and make the most of good health/days.
Tricia’s son was diagnosed with FA last year and is currently 6 years old

 

Ask for help from the relevant people, and do it now. Shout, scream, until you are listened to. Ask questions, and lots of them. Ask for time with the doctors without your child so you can ask questions that you feel uncomfortable asking with your child present. Give yourself a hug, give your child a hug, remember to be adaptable. Things change, so enjoy every moment you can; smile.
Pippa’s son has an undiagnosed form of ataxia. He is now 7 years old