NO HOPE
I thought my husband’s laziness meant he had fallen out of love – he now lives in a home ‘with no hope of recovery’
The signs and symptoms of Lee Holloway's devastating terminal condition
A WOMAN worried that her husband's laziness and refusal to shower were signs that he wasn't happy in their marriage.
But his strange symptoms lead to a devastating diagnosis that meant he had to move into a home in his 40s.
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In May 2016, Kristin Holloway had barely been married to her husband Lee for a year when she noticed him acting strangely.
Normally driven and passionate about his job at a tech company he'd helped found, Lee started missing work or going in very late.
He stopped showering and would frequently throw on the previous day's dirty clothes - Lee had always taken pride in his appearance, so this was odd.
At this point Kristin was six months pregnant with their child.
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She thought Lee might still be recovering from an operation he'd had in February 2015, to correct a heart murmur.
Kristin also worried that he wasn't happy being married to her.
She was "shocked and devastated" when Lee stepped down from his company in July 2016 - but her shock grew to concern as his behaviour "sharply declined".
"He didn’t change out of his pyjamas and spent a lot of time on the couch. He watched the same movies and TV shows on repeat," Kristin wrote in .
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"He showed no motivation or desire to be productive. That wasn’t normal behaviour for anyone, let alone my brilliant, amazing husband."
On maternity leave, she noticed that Lee had also developed obsessive tendencies, constantly counting floorboards in the house and the trees outside.
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While Kristin was in labour and delivered their baby via C-section due to complications, Lee slept through the entire thing.
Returning home with their baby, Kristin watched Lee further retreat into himself, developing more obsessive tendencies and refusing to shower.
"I woke up to a new version of my husband every single day, and I was terrified," she wrote.
She told Lee wasn’t happy and needed more help with the baby, to which he could only reply “I’ll get better.”
Kristin booked a session with a marriage and family therapist, during which Lee looked "blank" as she cried.
The mum made appointments with a GP, cardiologist, neurologist, psychiatrist, and a neuropsychologist when the therapist flagged that Lee's apathy was abnormal.
The neuropsychologist told the couple that Lee - at this point 35 - was either having a deep psychological break or the explanation was neurological.
But Kristin was overcome with fear at the psychiatrist's assessment.
"The psychiatrist told me I was in for a long, tough road. I was like, “Well, what does that mean?” and he told me it was possible Lee had a rare form of early-onset dementia," she wrote.
"I didn’t even respond. I was thinking, Dementia? This is the disease older people get when they start forgetting things. That’s not possible. That was the last thing I ever expected a doctor to say he had - I couldn’t believe it."
A DEVASTATING DIAGNOSIS
Kristin's fears were confirmed after an MRI scan showed that Lee had “atrophy in the brain that is inconsistent with [his] age".
She said: "My whole world ended. Up until this point, I still had hope he had a severe yet treatable psychological disorder.
"But I knew this was confirmation he had a neurodegenerative disease. It was the worst-case scenario. I was heartbroken."
Kristin quit her job, knowing her days with "a healthy version" of Lee were numbered.
After being assessed by specialists at the USFC Memory and Ageing Centre in San Francisco, Lee was diagnosed with had behavioural-variant frontotemporal degeneration (FTD) at the age of 36.
Doctors warned he would only continue to decline from that point onwards and no treatments or medications could reverse that.
";I felt so much grief, but Lee wasn’t even registering the severity of this diagnosis," Kristin wrote.
A DIFFICULT DECISION
The family learnt that he his FTD wasn't genetic, but had developed by chance.
Meanwhile, Kristin became Lee's carer, which gradually became "untenable".
Lee would suddenly bolt outside and cross the street with no regard to traffic, leaving the front door swinging open, and would frequently leave the baby gate open too.
Now 43, Lee has been in a home for the past two years getting round-the-clock care.
"He’s still physically active, but nonverbal," Kristin wrote.
"The juxtaposition of my son’s development and Lee’s progression has been a wild journey: When my son became potty trained, Lee became incontinent. When my son started talking, Lee stopped."
Kristin now visits her husband once a month.
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She turned "pain into purposed" by joining the board of The Association for Frontotemporal Degeneration to raise awareness about Lee's condition, setting up a in his honour and a yearly summit for FTD doctors and researchers to share the latest progress in the field.
While there's no hope of recovery for Lee, she hopes others like him will have treatment options in the future.
What are the symptoms of early-onset dementia?
YOUNG-onset dementia is when the brain robbing disease affects people before the age of 65.
Symptoms of young onset dementia are similar to those of late onset dementia.
For young-onset frontotemporal dementia (FTD) in particular - which affects the front and sides of the brain - symptoms include:
- Changes to behaviour: being inappropriate, or a change in sense of humour.
- Emotion: a change in how people express their feelings, or understand other people’s feelings.
- Awareness: people may not realise they are experiencing changes to their behaviour and emotions.
- Words: Having trouble using the right word – often saying another word or using a vague term like ‘thing’ instead of a specific object.
- Understanding: people may find it hard to follow or engage with conversations.
- Concepts: for example not understanding that money is used for buying things, or that the remote controls the TV.
- Communicating with others: slurred or hesitant speech, and maybe hard to understand.
- Understanding: Find it hard to understand long and complex sentences, this can affect reading and writing too.
- Movement: stiff or slowed bodily movement, weakness and twitches or cramps
If you are concerned about your memory, thinking, or any of the above symptoms, speak to your doctor.
Dementia mostly affects people over 65, but frontotemporal dementia tends to start at a younger age.
Most cases are diagnosed in people aged 45-65, although it can also affect younger or older people.
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