Living with Lewy body dementia

Watch above: After Alzheimer’s disease, Lewy body is the second most common type of dementia. Meaghan Craig speaks with a Saskatoon couple dealing with the disease about how it has changed their lives.

SASKATOON – Lewy body dementia. It’s maybe something you’ve never heard of and yet it’s the second most common type of progressive dementia after Alzheimer’s disease, according to the Mayo Clinic.

In fact, findings from Robin Williams’ autopsy reveal he had it and he didn’t even know it. Neither did 70-year-old Thomas Frank from Saskatoon until two years ago.

READ MORE: Robin Williams’ death brings mental illness to light: Sask. senator

“Memory loss, you know I couldn’t remember things especially short-term memory so forth and also the stiffening of your joints and just not feeling well,” said Frank.

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Frank would also suffer from visual hallucinations, at least half a dozen on a bad day.

“The first time I got them I was in the computer room working on the computer and I looked over and there was a man, a woman, a little boy and a dog and they were very clear and they were in clothes of 1800’s.”

That’s when Frank and his wife approached their family doctor.

“We had the geriatric doctor come out and did an assessment in the house and did a lot of asking of questions and watching Tom and doing a little bit of physical examination on him and by the time he left he was pretty sure it was Lewy body dementia,” said Bev Kidney, Tom’s wife.

A neurologist would confirm the diagnosis in May 2013.

“It’s scary but also comforting to have an actual diagnosis and now you know what’s going on, you can move forward and do what needs to be done after that,” explained Kidney.

While the cause of Lewy body dementia is still unknown, there are several factors that put you at higher risk for developing the disease:

  • being male
  • over the age of 60.
  • having a family member with Lewy body dementia.

As far as Tom is aware, he is the only one in his family to have ever had it.

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“The Lewy body has an abnormal protein that builds up in the brain cells and that’s what they call the Lewy bodies but why they start to build up no one knows,” added Kidney.

Accounting for five to 15 per cent of all dementias, it’s not uncommon for those diagnosed to suffer from depression.

“There is a lot of help out there and if you don’t get the help it, it makes it much harder,” said Frank.

Although the couple says they can’t plan much in advance any more and take each day at a time, they cherish the time they do have while Tom can do things, enjoy things and remember.

“All they can do is say you’re doing fine now but three months from now, six months from now, 10 years from now you’re going probably end up in a wheel chair, not knowing anybody like that,” said Frank.

“You do know that it’s going to progress eventually and you just have to deal with that as the time comes along, you know that probably Tom will end up in a care home at some point in time but hopefully it’s not going to be for several more years so you just take it as it comes and deal with that.”

The couple say for others out there the most important step is getting a diagnosis then reaching out for support.

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Alzheimer Society of Saskatchewan
301-2550-12th Avenue
Regina, Saskatchewan, S4P 3X1
Tel: 306-949-4141
Toll-free: 1-800-263-3367 (valid in Saskatchewan only)

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