My Experience – In Words

Explore what people with FTD say about their experience

  • Our Side of the Fence” – A recorded presentation by four people with early stage dementia discussing their experiences.This gathering was sponsored by To Whom I May Concern whose mission is to give people a chance to share with others the experience of life after diagnosis with a progressive brain illness.
  • Ask the FTD Patients. A closed questions only Facebook group for those who want the patient’s perspective on questions about FTD. This is not a support group. All questions are screened by group administrators before posting.


Blogs by people with FTD


Forbes.com FTD Series

Forbes.com contributor Alice Walton In 2012 wrote a series of five articles on people with FTD from their perspective. Here are all five articles:

Howard Glick – The Other Side of Frontotemporal Degeneration: Inside A Deteriorating Brain

Diana – The Disease That Stole My Career: Inside The Mind Of Frontotemporal Degeneration

Matt Rouse – Parenting With A Brain Disease: Inside the Mind of Frontotemporal Degeneration

Joanne Douglas – When Words Fail: A Rare Brain Disease Causes A Professor To Lose Her Power Of Speech

Brandt Henderson – “It’s Not Me, It’s The Disease”: Making Sense Of A Brain Disorder