Seizures and me: Charlotte's story

The situation

Charlotte, 23, had her first seizure 12 months ago. Since then Charlotte now has seizures several times a week. Doctors are still not sure on a certain diagnosis or a definitive cause for Charlotte’s seizures although it is suspected that she has Cushing’s disease.

In addition to this Charlotte also has Ehlers-Danlos syndrome – which means when Charlotte suddenly falls unconscious from a seizure she is at a much greater risk of injury. She has previously dislocated her hip and shoulder during a seizure and when she regained consciousness, she was unable to move or call for help. Now Progress Lifeline can call help for Charlotte.

Charlotte’s seizures are very sudden and often happen without any pattern or warning. Previously, someone would always have to stay with her due to the danger these posed to herself and others. Charlotte felt like her independence had been taken away because she couldn’t be on her own and this had a huge negative impact on her mental health.

The solution

Now, Charlotte wears a falls detector around her wrist, has smoke detectors, carbon monoxide alarms, heat detectors and a key safe that are all connected to the Progress Lifeline 24/7 response centre in Lancashire. The falls detector can detect if someone has fallen based on a pattern of movement, impact and sudden stillness. Once a fall has been detected, it will alert our response centre.

Charlotte has found the heat detectors are extremely useful as doctors suspect that heat may be one of the triggers for Charlotte’s seizures. Our response centre can identify if Charlotte’s home reaches a certain temperature and could warn Charlotte. This link between the heat detectors and Charlotte’s seizures is helping doctors investigating her condition, saying, “It has been a great help”.

Charlotte was apprehensive at first that Lifeline wouldn’t work for her and she didn’t want an unsightly large box in her house or on her wrist, however, after trying it out she now finds it extremely discreet, useful and a great help. Charlotte especially likes that she can go out in her garden and it still works, without the worry that should she collapse in the garden, no one would know. She also mentioned that sometimes she might bang her falls detector by accident - she was worried about this at first and “bothering the operators” but says that the team in our alarm response centre are always reassuring and friendly.

Outcomes

Charlotte wears her falls detector both in and outside of the house and although the falls detector doesn’t connect to the base unit in her house outside a range of 50m, Charlotte still finds it useful as if she does have a seizure whilst she is out she will often wake up in a postictal state, leaving her drowsy, confused and disorientated. Luckily, she has found that the falls detector, along with her medical ID tag, is useful for helping the emergency services identify that Charlotte has a health condition and is a medical risk.

Charlotte said, “I feel a lot safer in and out of the house now, knowing I have the falls detector. It has proved itself very useful. It makes me feel a lot safer. Before I got this there would be times where I would wake up from a seizure and be freezing cold on the floor with no idea why it was bizarre. Or my other half would walk in with the kids and I would be on the floor with a black eye or split lip and he would have no idea how long I had been there. It was scary for us all.”

Charlotte is also hard of hearing as she has auditory processing disorder which means she cannot differentiate sounds or identify where they are coming from. She does find that the base unit is loud enough for her to hear but sometimes may struggle to hear if the washing machine or TV was on loud. However, Charlotte has found that, if she was unable to hear the smoke alarm or base unit, our response centre could call her mobile on vibrate and check for a response. If there was no response, our operators would proceed to call her emergency contacts or the appropriate emergency services who would be able to access her home from the key-safe.

Before Progress Lifeline Charlotte felt helpless as she could not do anything on her own because of the risk that she would unexpectedly fall unconscious from a seizure. She explains, “I couldn’t do anything on my own, I couldn’t even cook or shower or hold my little girl in case I had a seizure and it broke my heart”. She was unable to work or even leave the house on her own as her health posed too great of a risk.

Now, she has the Progress Lifeline service, Charlotte can be left alone with her children saying, “That has been the biggest thing for me”. Progress Lifeline has now mitigated that risk and she can now be left on her own and alone with the children thanks to the reassurance that our response team can remotely monitor her sensors and alert the necessary people if an incident was to occur.

The children even understand how the lifeline system works, and what to do if Charlotte falls unconscious thanks to Progress Lifeline. Her youngest daughter, aged just 6, knows the ‘magic box’ and ‘magic voices’ are there to protect Charlotte and her family.

Stories like Charlotte’s help raise awareness for invisible, chronic illnesses and disabilities, to which Progress Lifeline’s service can benefit and help people’s lives. Thank you to Charlotte for sharing her experience with us.

If you know someone who may benefit from home monitoring or you are interested in finding out some information please call 03333 204 999 or email lifeline@progressgroup.org.uk