A life story to inspire us all: Mother Jacqui Atkinson's struggle with Stiff Person Syndrome

Mother-of-three Jacqui Atkinson has spent the past 20 years living - and nearly dying - with the one-in-a-million condition, Stiff Person Syndrome

Jacqui Atkinson, who has written a book on Living with stiff persons syndrome

The memory of a holiday nearly 20 years ago still provokes a wide smile from Jacqui Atkinson.

She and her husband Keith had booked their first trip abroad together to celebrate their fifth wedding anniversary.

“It was a cheapy holiday to Rhodes... one of those ones where you don’t know where you’re going to end up, but we ended up in Lindos, the best part,” says Jacqui, her eyes sparkling as she recalls their good fortune.

“We had such a wonderful time and were so grateful to my mam who had looked after the kids for us while we were away.”

Of course it’s not unusual for memories of good times gone by to retain their magic many years after they were banked, but this holiday would quickly become a particularly precious memory for Jacqui and her family, who were unknowingly about to be dealt a terrible blow.

Jacqui, who was 32 at the time and used to run for Gosforth Harriers, and Keith - who was suffering from ME - have three children.

Claire, then 12 and Ian, 10, are Jacqui’s older children from her first marriage and the couple have a son together, Allan, then four.

“When we got back from the holiday, Allan was poorly with a virus and I got it too,” she explains. “Then, I just didn’t get better.”

It was a few days after Jacqui began to feel unwell that she started to realise this wasn’t ‘the flu’ she’d assumed.

“I was feeling terrible and I started getting these strange spasm feelings - everything vibrating, not being able to breath or move. Everything would be rigid. My jaw would lock. It was really frightening,” she explains. “I would often go into the crucifix position, with my arms outstretched for hours and hours.

Jacqui Atkinson, who has written a book on Living with stiff persons syndrome
Jacqui Atkinson, who has written a book on Living with stiff persons syndrome

“We’d get the doctor and they would say I was hyperventilating... then they would say I wasn’t and would call an ambulance.

“Then they would come and say I was hyperventilating and would take me to hospital. Then I would be completely exhausted and unable to do pretty much anything.”

It was a terrifying cycle which kept repeating itself.

“My GP was getting annoyed because he knew I wasn’t hyperventilating,” says Jacqui, who is now 51.

“But the doctors at the hospital and the paramedics said I was, and no-one seemed to have an alternative explanation for what was happening to me.

“It was terrifying. When you’re having an episode you can stop breathing because all your chest muscles and diaphragm go into spasm and the pain is indescribable,” Jacqui continues. “Your eyes can freeze, you can’t eat or get any kind of useful sleep.

“They would give me the same painkiller as they give people who are under anaesthetic.”

As the episodes - which Jacqui christened ‘salmon attacks’ because “I was thrashing around like a fish out of water” - became more and more frequent, she found herself getting referred to doctors of all persuasions.

“Tropical diseases, parathyroid gland specialists, all sorts I had never heard of,” she says. “But they all came back saying they couldn’t find anything wrong. One doctor even suggested I was suffering from anxiety because of a bad marriage - that was after she complemented me on how toned and slim I was,” she adds with an audible roll of the eyes.

“How could she have said that?

“The only reason I was so toned was because my muscles were constantly moving and firing. It was frustrating and frightening because I knew there was something very wrong and it was having a huge effect on our family.”

Jacqui’s eldest daughter Claire took on many of the responsibilities her mum was now unable to take care of.

“She had to take on the role of mum as well as looking after me - and I’m talking bed bathing, putting me on the commode, all that stuff, which no mother wants to see their daughter doing,” says Jacqui.

“Also looking after Allan, cooking, helping Keith when he was unwell. She often refused to go to school because she didn’t want to leave me. She ended up doing really well in her studies, but it was very hard on her.

“It was a huge strain on Keith too,” she continues. “He had his ME to deal with as well as seeing the person he loved suffer the most excruciating pain. I would be screaming in pain and not even know I was screaming.

“All my muscles would be in rigid spasms for days, sometimes weeks on end. I wouldn’t be able to move a muscle. I couldn’t eat, it was almost impossible to sleep. It was torture really - and all the while nobody could tell us what was wrong.”

Eventually a recommendation to see a neurologist called Professor Bates at the RVI brought a glimmer of hope.

“We couldn’t afford to go private, but Keith’s mum and dad paid for me to see him,” says Jacqui. “He said there was definitely something going on and that I should go back in a couple of weeks.”

But just days later, Jacqui suffered a life-threatening episode when her tongue went into spasm and went down her throat.

“Keith dialled 999 and told them I was under Prof Bates’ care, so when the emergency was over, I was put on the neurology ward and was there for a long time.”

It was during this elongated hospital stay that Stiff Person Syndrome (SPS) - along with epilespy and multiple sclerosis - was first suggested as a diagnosis.

A rare and incurable neurological disorder, SPS is thought to be the result of an autoimmune response that has gone awry in the brain and spinal cord. It effects one in a million people.

“Two of the doctors thought that’s what it was, but others weren’t sure. Some of them still thought it was all in my head.”

But a test on Jacqui’s spinal fluid finally confirmed it.

“I remember Prof Bates coming in and saying that they’d found the anti-GAD antibodies - which is the main way of diagnosing SPS - and I had been vindicated,” she says.

But with the relief of diagnosis came an overwhelming sense of horror.

“Yes I was pleased that I would have to be taken seriously, but at the same time, it was confirmation I had an extreme type of this horrendous illness,” says Jacqui.

“Then they told me that the last person who had been diagnosed had lasted only two years.”

It was 1995 when Jacqui was given that devastating prognosis. Throughout her illness she has been treated with an ever-increasing combination of relaxants and chemotherapy-type drugs in an attempt to control the symptoms.

“And 19 years later, after all the different things they have tried, I’m still here.”

Not only that but Jacqui, who is a Jehovah’s Witness and was a full-time minister before her illness, has written a book about her experiences in the hope of offering hope to fellow sufferers, as well as raising awareness of the condition and funds for the Stiff Man Syndrome UK and Ireland and St Oswald’s Hospice, where Jacqui and I are talking, and where she spends one day a week as a day hospice patient.

“You’ll always find me in the craft room,” she laughs. “Before I was ill, I couldn’t draw at all. The kids used to get me to do their art homework because the drawings were so bad it they looked like a child had done them.

“But I was lying in bed one day, looking at the face of this man in a magazine and suddenly thought he looked really interesting and I wanted to draw him. I asked for a pencil and paper and I sketched him - and it looked like him. Then I moved on to children’s paints and then watercolours.

“I think because I had no energy and was too ill to do all the rushing about I used to do, the creative side of my mind was suddenly allowed to flow. When everything else stopped, it has the room to grow.

“A very wise friend of mine said, ‘slow down and smell the roses’. Life is there to be appreciated, but we rarely find the time. It’s the same with the book.”

Although she didn’t set out to write a book, it became obvious to those around her that Jacqui’s early morning writing sessions were producing something worth publishing.

“What became the first chapter in the book was something funny and unusual that happened in our family, so I thought I would write it down,” she says.

“I would wake up about seven in the morning and before Keith woke up, I would write for about an hour. It would have me done in for the rest of the day, but I wanted to write and naturally went back to the beginning to before I was ill and kept going.

“Somebody read a bit of it and said ‘you should write this as a book’.

“I’d never thought of it, but thought it would be a good idea - not necessarily to have it published or anything - but to have a record for the family about what had happened to us.”

The book, which is written with a healthy dose of Jacqui’s infectious good humour and optimism, chronicles the unimaginable suffering and frustration which she and her family have gone through over the past 20 years.

Some of it has been tough for Jacqui to write, while all of it has so far been too hard for her now grown-up children to read.

“None of them can bring themselves to read the book. The memories are too raw and it was too painful for them,” says Jacqui. “Keith has read it and enjoyed reading it but it obviously brought back lots of painful memories too.

“I’ve tried to write it in a positive and light-hearted way. Even the really bad bits, there was always something funny happening. Of course there are very sad bits too.”

None more so than the terrifying times over the years when no-one thought she would pull through.

“I have been in and out of intensive care so many times and have been in here (St Oswald’s) for what they thought would be end of life care,” she says.

“That time, everyone thought that was it,” she explains. “I had been in intensive care and I was dying.

“I’d been stiff for so long and the spasm was so violent... I was in and out of consciousness and I was worn out.

“They switched the monitors off and told my mum and Keith that I had a couple of hours to live. But I so desperately did not want to die in that little cell in intensive care... and then the call came through to say I had a room at the hospice,” she smiles.

“The rooms here are so beautiful. It’s like a lovely comfy bedroom but with full open windows looking out onto the gardens.

“It was winter, but you could see the green grass and the blue sky. There must have been something in me which just wanted to keep on living when I saw that. It saved me, I think.

“I was still very ill, and they still expected me to die - but I didn’t.”

Not only that, but a new treatment, which she was given after she recovered, gave her the most wonderful of gifts.

“I danced at Claire’s wedding in 2010,” she beams. “They tried this drug called Campath - a chemo-type treatment which you can only have once - and it worked really well for a while. It was such a special day for us as a family. It was perfect timing because the treatment had put me completely in remission.

“To think that Claire was in the room when they weren’t expecting me to survive and then there I was on the dance floor... it was amazing.”

Since then Jacqui, who lives near St Oswald’s in Gosforth, has also become a grandmother twice over.

“Claire has had Sam who is two, and Anna is nearly six months,” she says, like any doting grandma would.

“On a really good day I’ll be able to sit on the floor and play with Sam, which is so precious. But I do get very, very exhausted and I can’t sit up for very long.

“I was very poorly last year and had to have another treatment, which works with whatever Campath is left in my system.

“Sometimes I’ll just sleep and sleep and sleep for two or three days. Then I might pick up a bit and even walk a few steps. But you always pay for it later,” she laughs.

Listening to Jacqui talk with such positivity about the small but priceless pleasures she has found and continues to find in the midst of such a cruel condition and uncertain future is truly inspiring.

I wonder where she gets her strength. She smiles.

“My mum, who has been an amazing support to us through it all, always says I’ve got a backbone of steel. I don’t give in.

“So the way I see it, if you don’t give up, something inside keeps fighting. The treatments I have tried kept me going for a little bit and would give me a boost to hold onto until the next one.

“Who knows how I’ve done it, and who knows what is going to happen in the future?

“But you can’t dwell on it... it’s too scary. You just have to live in, and enjoy the moment. There’s so much to be grateful for.”

* One in a Million by Jacqui Atkinson is available from www.amazon.co.uk . For more information on Stiff Person Syndrome, visit the charity website at www.smssupportgroup.co.uk . To find out more about St Oswald’s, visit www.stoswaldsuk.org

Stiff Person Syndrome: the facts

Stiff-person syndrome is a rare neurological disorder with features of an autoimmune disease.

Often triggered subtly by a period of emotional stress, it commonly develops in a person’s mid-40s.

It causes a patient’s muscles to stiffen over tim. Sufferers can also experience a heightened sensitivity to stimuli, including noise, touch and emotional distress, which can trigger muscle spasms.

SPS affects twice as many women as men.

Scientists do not know what causes the condition, but research has shown it is the result of an autoimmune response that has gone awry in the brain and spinal cord.

The condition is often mistaken for Parkinson’s disease or multiple sclerosis.

People with Stiff-Person Syndrome have raised levels of an antibody that works against an enzyme involved in the synthesis of an important neurotransmitter in the brain.


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