When Jackie Middleditch started to experience confusion, mobility problems, and incontinence in her mid-60s, her family thought they were losing her to dementia. And with no cure available, the future looked bleak.
Amazingly, today Jackie, 70, is back to her old self – her mental agility is restored and her wheelchair put away – after it was discovered she was actually suffering from a curable disease that only mimics the symptoms of dementia.
Former children’s worker Jackie says: “My husband Clive and I had both retired by the time I first became ill, in 2016.
"My initial symptoms appeared on a holiday, when I began feeling dizzy and experienced balance problems. Soon I was also getting mental confusion, short-term memory loss and fatigue.
“Over the next months I developed bladder issues and had accidents when I couldn’t get to the toilet in time.
"It was distressing and frustrating. But actually, because of my mental confusion, I now have very few memories from that time. My main recollection is just feeling bone-achingly tired.”
Because of the combination of her age and symptoms, Jackie’s GP and entire family – including daughter Suzanne, 42, son Thomas, 39, and a close relative who’s a nurse – assumed it was signs of early dementia.
Clive, 71, a former head teacher, says: “Jackie went to our GP at least eight or nine times over five years and was referred to a number of specialists, but she was always too confused to explain herself properly.
“Our family doctor never questioned why she was experiencing memory loss, confusion, mobility problems and bladder problems, assuming they were inevitable parts of the ageing process.
“She saw various specialists during that period, but each time only one symptom was addressed in isolation.
"For example, she saw a knee specialist about her mobility problems who told her she needed a knee replacement. She went into hospital for the op twice, but each time it was cancelled because her blood pressure was low.”
By 2021, Jackie was so weak and fatigued she was struggling to get out of bed and wanted to sleep all day.
“We’d always looked after our two grandkids – George, who’s seven, and two-year-old Ivy – one day a week,” says Clive.
“Now Jackie could no longer do that. We used to love hiking, but she developed an odd, shuffling walk which our doctor called ‘glue feet’. She needed a wheelchair if we went out.
“Things felt hopeless. Everyone knows dementia only gets worse and worse, so the future was looking grim.”
Everything changed later in 2021 after Jackie, from Lowestoft, Suffolk, had a fall and went to hospital. A doctor ordered a blood test and MRI, which revealed fluid on her brain.
After a lumbar puncture, she showed a brief but fairly dramatic improvement, with less confusion and faster movement, and a doctor told Clive: “Your wife doesn’t have dementia. I think she has something called NPH, or normal pressure hydrocephalus, which could potentially be cured by surgery.”
Clive says: “By then, Jackie was too confused to understand what was going on but I was ecstatic. I had a chance to get my beloved wife back.”
Normal pressure hydrocephalus is a condition where fluid builds up around the brain, primarily in people in their 60s and 70s.
The three main symptoms are confusion, urinary incontinence and mobility issues – including shuffling and a wide-based gait.
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Because Jackie wasn’t walking properly, it was exacerbating the pain in her knee, caused by arthritis.
The number of NPH patients in the UK is unknown, but the US-based Hydrocephalus Association estimates nearly 700,000 Americans suffer from it. And experts believe only 20per cent of patients are diagnosed.
By a fluke, nearby Addenbrooke’s Hospital in Cambridge was launching a groundbreaking clinic to treat NPH.
Patients undergo memory and walking tests to establish if they have it and if surgery will help. If so, they have a brain MRI and lumbar infusion study to calculate the resistance of cerebrospinal fluid leaving the brain.
In August 2021, Jackie had surgery at Addenbrooke’s to install a shunt – a long, thin tube that drains the excess cerebrospinal fluid from around her brain into her abdomen.
Doctors said without the operation, her condition would have continued to worsen and could have been life-threatening.
“Three weeks after the operation, Jackie was sitting in a chair and suddenly stood up,” Clive says. “Before then, she’d needed a riser to push her out of the chair.
“As her mobility returned, we were able to return to our shared hobbies of walking and gardening together.
"Over the next weeks her memory and thinking ability returned. Soon we were doing crosswords together again. It felt marvellous. Our grandson George, says, ‘Nanny used to sit down all the time, now she can play hide and seek with me’.”
Jackie is now revelling in her return to health and has been discharged by the hospital, except for a yearly review. And because she is no longer shuffling when she walks, her knee issue has improved.
“Once it seemed I had nothing to look forward to, other than a slow decline,” she says. “Today I’m cured. Miraculous is the only word to describe it.
“I’ve got my life back – but it does make us wonder how many older people, thought to be on a remorseless downhill slide, could in fact be saved.”
- Shine (shinecharity.org.uk) is a UK-based charity supporting patients with hydrocephalus and spina bifida
