I am Brian, follow my story about FND and meet my friends too!
Brian the robot was built in a factory. He was just like all the other robots that were built in the factory. Brian was a very helpful robot; he liked to be kind and help lots of people in his town.
Brian would fetch and carry, make and mend. He was such a useful robot. Brian listened very well. He liked to hear all the noises around him: the chatter of children, the sounds of birds and animals. Brian was happy when he was busy and would often sing to himself as he was going about his tasks.
At the end of the day, Brian liked to meet his robot friends at the factory and hear all about what they had done. Dave the factory worker looked after all the robots. Dave would tell them what marvellous things the people of the town said about them.
Brian was always busy and was always pleased to help others. He helped at the school and at the Doctor’s surgery. He helped the postman and the vet. He was so generous with his time and he always said ‘yes’ if someone asked for help, even when he was tired.
Then one day something went wrong.
Brian was helping in the shopping centre when he heard a sudden loud noise and his system began to wobble like a jelly. His knees went weak and he couldn’t keep his hands still. He was very embarrassed and sad that he couldn’t finish his job today.
That night Dave rebooted his system.
Another day, Brian was helping in the cake shop selling cream cakes. He was serving a woman wearing a lovely white coat but his robot arm jerked suddenly! The cake went soaring up into the air and landed with a SPLAT on her head! Her coat was not white any longer.
Dave gave Brian a new robot arm.
Brian was helping at the cycle shop. He was asked to ride some bicycles into the shop but his legs would only pedal backwards! He shot out of the store room and into the rubbish heap.
Dave oiled his robot legs.
One day he was helping in school when the teacher asked everyone to be quiet. Brian’s radio suddenly tuned into a pop station and the speakers went full volume….the children all started dancing.
Then alarms went off in his robot body. He felt a buzzing inside. He began to wobble and his robot body began to power down.
Brian was taken back to the factory. This time Dave did NOT know what was wrong. Dave did all the usual checks. Brian’s robot body seemed as if everything should work……but it just didn’t. Dave could usually fix everything…. this time he just couldn’t.
Brian said to Dave ‘power me down’. Brian did not feel useful to anyone anymore and felt so tired.
A robot expert was called in. Dave and Brian were told that Brian had Functional neurological disorder or FND. With FND, Brian’s computer brain had a problem with the software although Brian looked okay, his computer brain was sending and receiving all the wrong signals.
Brian and Dave had not heard of FND. The expert said it is actually quite common in both robots and people, even though not many people know about it.
Dave really wanted to help Brian feel better but wasn’t sure how.
He spoke with the robot expert and learned all he could about how to help robots and people with FND. The expert says that, at the moment, there is no way for Dave to fix Brian’s FND with his toolbox. But there is a different kind of toolbox (or set of skills) that Brian can start to use.
His toolbox skills could be:
- Make time to rest
- Plan what you do so you don’t do too much.
- Concentrate on your breathing to help.
- Wear ear defenders if you find noise too much.
- Only concentrate on one thing at a time.
This is called being mindful.
- Tap or use a fidget toy as a distraction.
- Try to learn your triggers. A trigger is something that can bring on any of your symptoms.
Dave said that FND can affect everyone differently and what happens can change from day to day.
Brian began to learn to live with his FND. Every day was different: some days were incredibly hard, some days were a little bit better.
He was missed by the people of the town, but they knew he had to stay at home when he needed rest.
- Make sure that Brian was safe if he started to wobble.
- Make sure he had quiet space if he needed it.
- Make sure that he could sit down when needed to do his tasks.
- He was always so helpful. They made sure he had everything he needed to help him.
- Choose tasks that he felt he could manage.
- Give him time to REST.
Brian had to think carefully everyday about the work that he took on. He found new skills and new tasks that he would enjoy. He knew he had the support of everyone in his town. If anyone didn’t understand why he behaved differently, he would tell them about FND.
He still helped in school and he made the children smile. He was booked for all the school discos. He made the best milkshakes in town. He would still feed the ducks.
Most of all he enjoyed time with Dave and the other robots, and he always looked out for new FND Friends.
Story by Hannah Padley, illustration by Tamsyn Hiscock, incorporation designs by freepik.com
Thank you for reading about Brian and his journey with FND. If you want to read the story again please click the button below. Otherwise, there is some information and help for your parents below.
Support for FND
FND FrieNDs is a patient and carers support group for those living with the diagnosis of FND in the South West of England.
The groups meet regularly in a pre-arranged venue to meet others with the same diagnosis. This helps to reduce feelings of loneliness, misunderstanding and isolation that are often associated with this particular diagnosis. We can in some instances make home visits to those who are housebound. The idea of this is to encourage the individual when they feel confident enough with us, to leave their home and meet/ come with us to a local venue where they can meet others in a similar situation, in a comfortable, fun and positive environment. Please note though, we are not medical professionals and do not offer medical advice.
What FND Friends Do
FND FrieNDs is a charity based in the South West of England promoting awareness and support for those who have a diagnosis of Functional Neurological Disorder, as well as helping to encourage greater understanding within the medical profession of this fairly common but little understood condition.
This website is intended to provide information and support for those who have been given a diagnosis of FND and their friends, family and carers.
FND FrieNDS covers the South West of England and runs meet-ups, craft and holistic therapy sessions and other events in Gloucester, Bristol, Weston-Super-Mare, Yeovil, Salisbury, Taunton, Devon and Cornwall.
Functional Neurological Disorder (FND) is an altered motor or sensory function, which affects how the signals/messages from the brain are sent and received to allow normal functioning of the body. There are many reasons why people experience FND including illness, physical or mental trauma or an operation. There is a lot of work to do to understand more about this condition. FND Friends are advocates for improving support for the cause and actively work with healthcare and medical professionals to broaden understanding and education.
FND Friends Aim To:
Help reduce the feelings of isolation caused by FND.
Demonstrate that people suffering with FND are not alone.
Work with healthcare professionals to improve relationships with those who have FND.
Create a central point of contact for patients upon diagnosis.
Working in partnership with Southwest Hospitals.
Members of Staff
Registered Charity Number: 1176608