UK TV show has character with corticobasal degeneration

A recent poster to a UK-based online support group for those coping with corticobasal degeneration (CBD) noted that a TV show character has CBD.  ITV’s Midsomer Murders program, Season 21, Episode 1 includes actor Nigel Havers depicting someone with CBD.  This aired on Tuesday, January 21st.  It’s wonderful that some awareness is being generated for such a rare disease.



“Treating Regret” (NYT, 1-22-20)

Recently the wife of one of our local Lewy body dementia support group members passed away.  The caregiver husband feels a lot of regret, which is understandable and common.  I thought of him (and all caregivers) when I came across this article tonight.   Though the focus of the article is on the regret associated with treating a stroke late in the game, I think much of the article will resonate with all caregivers.

Here’s a short excerpt:

“We often don’t explore the role regret might be playing in the distress many patients and families experience, or acknowledge it when it’s clear that it is contributing to their pain.  Simply naming regret — creating the space for patients to confront and explore this emotion — is an important step, as is reassuring patients or family members that in the vast majority of cases they made the best decision they could with the information they had. Medicine is filled with uncertainty, and even with the benefit of hindsight it’s not always clear how, or if, things could have turned out differently. … Regret is a fundamental aspect of being human. … Perhaps none more important than embracing regret as part of life, and focusing not on what might have been but on what still is.”

The full article is here:


“Can a Second Opinion Make a Difference?” (Yale Medicine)

When people call me about receiving a diagnosis of a neurological disorder, I often encourage a second opinion.  One reason for this is that we have seen with our brain donation work that clinical diagnoses (given while someone is alive) are only correct half the time!

A local support group member shared a useful article on this topic from Yale Medicine.  See:



“When Life Throws You Curveballs, Embrace the ‘New Normal’” (NYT)

This recent New York Times ( article may be useful for those with neurological disorders and their caregivers.  See:

When Life Throws You Curveballs, Embrace the ‘New Normal’
For patients with life-altering illnesses or anyone just getting older, it helps to roll with the punches and make the best of the here and now.
By Jane E. Brody
New York Times
Jan. 20, 2020

“Diagnosed with dementia, she documented her wishes for the end.”

This article in yesterday’s Washington Post about a woman who completed an advance care directive.  Her care facility would not follow her wishes since the woman had been diagnosed with dementia.  See:

Diagnosed with dementia, she documented her wishes for the end. Then her retirement home said no.
By JoNel Aleccia 
Washington Post
Jan. 18, 2020 at 6:00 a.m. PST