Georgie Weatherley suffers from tremors. She fears they may eventually kill her
Violent tremors engulf a mum’s body up to 20 times a day – triggered by anything from noise to stress – before her muscles spasm, then stiffen, holding her in a vice-like grip, like a human statue.
Georgie Weatherley, 30, of Coleford, Gloucestershire, suffers from Stiff Person Syndrome (SPS) – a one-in-a-million autoimmune disease of the nervous system that she says even frightens her two children.
Georgie is recording her thoughts to raise awareness. Her daughter, Charlotte, 11, said of her mum’s illness: ‘When it first started, my anxiety got really bad. I was scared to be around her.
‘I was scared if I did something wrong I would set her off into a tremor, which could make the ambulance come and then I would think it was all my fault.’
Harrowing video footage, shows Georgie having an episode, as she talks about SPS – starting with alarming tremors, followed by her body stiffening – makes it all too clear why an episode would terrify a child.
Triggered by the stress of filming and a barking dog, the camera is turned off, as Georgie, who almost needed to be resuscitated, starts gasping for breath.
‘I’ve lost everything to this condition. I have no life. I used to be sociable and a busy and happy mum,’ she said.
Diagnosed with SPS in October last year, after months of low moods and back pain, Georgie now fears there will come a time when she will not be able to hug her children – which is already risky, as it can lead to tremors.
‘My biggest fear is not being able to kiss my children goodnight or hug them,’ she confided.
‘I know I will turn into a permanent statue one day and the thought of it is terrifying.
‘I’ve lost everything to this condition. I have no life. I used to be sociable and a busy and happy mum,’ she complains
Doctors didn’t know at first what was wrong with her. Then she was diagnosed with stiff person syndrome (SPS), a rare autoimmune disease that turns her into a human statue
‘The idea of not being able to hug my children or kiss them goodnight, because my muscles will have turned to stone, is unbearable.’
Previously a stay-at-home mother-of-two, Georgie’s problems began in March last year, when she started feeling low.
‘I’d started to feel numb. I didn’t have any emotions anymore,’ she said.
Georgie even started thinking she had stopped loving her children and their dad, Dave Titmuss, 36, who now cares for her full-time.
Her first attack landed her in Gloucestershire Royal Hospital for four weeks: her arms and legs completely rigid
‘I even considered leaving Dave, my fiancé of 10 years. I didn’t know what it was, but life felt really hard,’ she confessed.
‘Everything I tried to do was difficult. Doing housework, taking the kids to school, cooking tea, it all felt like a massive effort.’
Visiting the doctor, Georgie, who is now wheelchair-bound by SPS and, as well as Dave, is helped once a day by outside carers, was prescribed anti-depressants, but they made no difference.
‘By the May we went to Butlins in Minehead, Somerset, like we do every year, as it’s a family favourite of ours,’ she recalled.
‘But I didn’t enjoy it and, after I passed out one day in the caravan, we went home early.’
‘I’m a 30-year-old woman, but I’m wheelchair-bound, I’m incontinent and I have to wear an oxygen mask,’ Georgie says, despairingly
‘My body is unresponsive when it locks-up. If I’m having an attack, I know what’s happening, but I can’t stop it’
Blood tests showed Georgie had unusually elevated levels of glutamic acid decarboxylase (GAD) antibodies: a tell-tell sign of Stiff Person Syndrome
‘I was in agony and my arms and legs were completely rigid’
After two months of fluctuating moods, in July last year, Georgie first felt her body go stiff.
‘I felt an excruciating pain in my back pain, when I bent over. I just couldn’t move or stand up at all,’ she recalled.
‘Dave managed to get me to bed, but the next morning I was in agony still and my arms and legs were completely rigid.’
After her fiancé called 999, it took paramedics three hours to get Georgie out of the house and into an ambulance.
Taken to Gloucestershire Royal Hospital in Gloucester, she remained there for four weeks, barely able to move.
With Dave looking after their children, Charlotte and Marshall, four, medics struggled to find out what was wrong with Georgie.
Baffled, they eventually discharged her in August, asking her to return for regular check-ups.
When, in September, she was still experiencing random bouts of pain and stiffness, she went back to hospital.
She said: ‘At the kids’ school disco I felt to floor when I felt a terrible pain in my back again.
‘I lay there for a minute, unable to move. After the pain wore off, I realised I needed to get back to the hospital.’
Given blood tests, by October last year, medics discovered Georgie had unusually elevated levels of glutamic acid decarboxylase (GAD) antibodies, a tell-tell sign of Stiff Person Syndrome.
After researching online, Georgie discovered people with the condition sometimes feel low, because the syndrome is caused by having low levels of neurotransmitters – chemical substances released at the end of a nerve fibre – which help to maintain a person’s mood.
Georgie’s illness has gotten progressively worse and she fears what awaits her next year
Georgie, whose spasms can also be triggered by temperature changes from hot to cold, explained: ‘My body is unresponsive when it locks-up. If I’m having an attack, I know what’s happening, but I can’t stop it.’
Hospitalised countless times after extreme tremors, earlier this year, an episode was triggered as she sipped a hot chocolate in a Cheltenham café with Dave, when a lorry beeped repeatedly, as it reversed.
‘My whole body locked-up, completely froze,’ she recalled.
‘It took me an hour and a half before I came out of it.
‘I know this condition could kill me, as, if my chest locks up, I won’t be able to breathe.
‘This condition makes me feel sad, happy, but it also makes me feel love, because we are closer together’
‘I suggested Dave left me when I was diagnosed, because we would never live the life we were supposed to have.
‘But Dave, who lived next door to me growing up, said, ‘Don’t insult me,’ adding that he’d love me forever, whatever.’
The incurable condition now means Georgie, who manages it with medication to treat the pain and relax her muscles, cannot look after her children by herself.
And she is forced to hear her daughter’s heartbreaking memories of how she used to be, before SPS.
Charlotte said: ‘We would do so much and she wouldn’t have all these fits and I wouldn’t be worrying as much as this and our family was happy.’
Her only consolation is hearing Charlotte say that the trauma has made her family closer.
When she asked Dave whether he’d be better of without her, he replied ‘Don’t insult me.’
‘This condition makes me feel sad, happy, but it also makes me feel love, because we are closer together,’ Georgie’s daughter, Charlotte, said
‘This condition makes me feel sad, happy, but it also makes me feel love, because we are closer together,’ continued her daughter.
Now Georgie, who has no idea how long it will take for her muscles to stiffen entirely, dreads her condition deteriorating.
She said: ‘My SPS has progressed so much in a year, it scares me to think what I will be like in another 12 months.
‘I’m a 30-year-old woman, but I’m wheelchair-bound, I’m incontinent and I have to wear an oxygen mask.
‘I would like to marry Dave but we are just taking each day as it comes.
‘I can’t even be alone with my children, because of the risk I will have a fit. It really is a living nightmare.’
Georgie is fundraising for a mobility car with a ramp which will help her to get out more with her family in her wheelchair: www.gofundme.com/exstension-on-our-house