Lorraine's story

Taking daily exercise while on lockdown can pose extra challenges for anyone with uncontrolled seizures, as Lorraine found out.

Lorraine (not her real name) was taking her daily walk recently, in a bid to stay as healthy as possible during the current nationwide lockdown due to covid-19.

Lorraine was following her regular route but part way through the walk she began to experience a series of partial seizures which rapidly moved into a complex partial seizure.

She has no idea how long it lasted, but in the course of the seizure she strayed away from the public foot path and into private grounds.

“As I started to come out of the seizure, I was aware of someone shouting and swearing at me and telling me to ‘get ******* out,’ she recalls.

“I had no idea where I was. I felt very disorientated, and to make matters worse, I had lost my glasses, so I couldn’t focus or see anyone properly.”

Scared and frightened 

Lorraine tried to explain to the man who was shouting at her that she had epilepsy and had wandered off course while havinga seizure.

“I was finding it hard to talk and the man just kept shouting as if he didn’t care. I am sure my words were slurred as they often are as I come out of a seizure, but he must have understood some of what I was saying because he shouted at me ‘people with ******* epilepsy shouldn’t be allowed out.’

“I felt very scared and frightened. I don’t know how I managed to find my way home but eventually got back some hours later. Now I am having to manage without my glasses which is really difficult and I’m scared of going out again.”

Looking out for others

Nicola Swanborough, Acting Head of External Affairs at the Epilepsy Society said: “Lorraine’s experience is quite shocking to hear about. In these very difficult times, we would hope that everyone would be kind and look out for each other, obviously respecting the boundaries of social distancing.

“To shout at someone who is clearly disorientated and struggling to explain what has happened is unforgivable. People are often confused during and after a complex partial seizure and while the man may not have understood what was happening to Lorraine, he could have helped her by talking to her in a calm way and showing respect and kindness.

“If you encounter someone having a complex partial seizure, it is important to speak calmly to them and to reassure them, guiding them away from danger. While the man in this case may not have felt comfortable in physically guiding Lorraine to a safe place, he could have spoken to her gently and allowed her time and space to recover.

“We would hope that anyone who encounters a person having a seizure would remain with them to ensure their safety and well being, while safeguarding their own health.”

Take extra precautions

During this time of social distancing, the Epilepsy Society would advise anyone with uncontrolled seizures to take extra precautions when going outside for daily exercise. Wherever possible, ask a member of your household to go with you, so you will have someone to help should you have a seizure.

If you are on your own, you must consider whether you feel safe to go for a walk or whether you would feel safer to stay indoors. If you do go outside, make sure you stay in a built up area and tell a friend or neighbour where you are going and when you expect to be back.

Wearing medical jewellery that will alert someone to the fact that you have epilepsy, can be helpful. Or you could carry one of our ‘I have epilepsy’  ID cards. 

You can read more about seizure alarms and safety aids here.