Family feared I had dementia... but surgery cured me
Suffering confusion and incontinence in her 60s, Jackie Middleditch’s family feared she had Alzheimer’s. But a simple operation brought her back to them
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 mimics the symptoms of dementia.
Former children’s worker Jackie said: “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 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, said: “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, she 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,” said 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.”
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.”
NPH 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. Because Jackie wasn’t walking properly, it was exacerbating the pain in her knee, caused by arthritis.
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 to install a shunt – a long, thin tube that drains the excess cerebrospinal fluid from around her brain into her abdomen.
Jackie is revelling in her return to health and has been discharged by the hospital, except for a yearly review.
She said: “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 could be saved.”
• Shine (shinecharity.org.uk) is a UK- based charity for patients with hydrocephalus and spina bifida.