During the process of trying to find out anything that would help us, I found this YouTube video which both left me amazed and made me want to scream. The doctor professor is engaging and made a startling statement. *****COLONEL at 12.35****
Since this disease affects learned knowledge unlike memory in Alzheimer’s, and I know I’m simplifying this for the layperson, what I would like to see is for the words COLONEL vs ARBITRARY to be used by all doctors neurologist, psychiatrists, primary care, ER physicians as part of an addendum to the Mini Mental State Exam (MMSE). If that can help shorten the time of diagnosis so people don’t have to go through what my sister and family have gone through, I would consider that one successful outcome of this hideous tragedy. As the doctor in the YouTube above said, people thought FTD was rare and it’s often incorrectly diagnosed.
It’s a brain disease that affects a specific part of the brain, not memory as in Alzheimer’s, rather, personality, behavior and language with a median age of onset of 55 rather than 75 for Alzheimer’s.
It’s a young onset young person’s disease unfortunately, and was discovered by Arnold Pick in 1892, about 15 years before Alzheimer’s work.
“When I was a resident, people said, ‘This Pick’s Disease, you’ll never see it.’ It’s amazing they just said, ‘Uh you know just what was described is really rare, but that you might see a case or two.’ Unfortunately, a lot more, it’s far, far more prevalent than people recognize and certainly underdiagnosed. You guys probably know from experience that most people with frontotemporal dementias are given the clinical diagnosis of Alzheimer’s disease, yet so it’s people they’re still sort of an emerging understanding of the clinical aspects of it, so it’s often misdiagnosed.” H. Branch Coslett, MD
With a number of doctors in the hospitals we’ve been in since the end of January, 2015 to mid-June, 2015, I’ve lost track of the number of doctors who said they had read about it once in med school or had no idea what it really is. This needs to be rectified. Help us spread the word.
“This needs to be rectified. Help us spread the word.”