First Person Accounts

We invite people who have been diagnosed with FTD to share their thoughts through short written pieces for this page. Your words have the potential to bring understanding about the experience and impact of FTD in ways no one else can.

For more information or to submit your writings, contact us at or 866-507-7222. FTD Patient Article Series contributor Alice Walton has written 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

Julie Krueger

Julie KJulie, diagnosed at age 45, writes about her own experience as she lives with FTD through a blog entitled Julie’s Journey.

Howard Glick

Howard was misdiagnosed with bipolar disorder in 2005.  In 2010, he learned he had FTD.  Howard has recently started a blog to help people with dementia, caregivers, friends and family.  He gives honest, real accounts of what living with FTD is like for him.  Click here to read Howard’s blog.

Dr. Bob Fay

Dr. Bob Fay tells his story of living with Pick’s Disease.  He talks about the term “dementia,” how FTD differs from Alzheimer’s Disease, and the difficulty of getting an accurate diagnosis.  Read the story of Dr. Fay in his own words here.

Lee’s Story

Lee was diagnosed with behavioral variant frontotemporal degeneration (bvFTD) in May 2010.  He says that writing about bvFTD has helped him understand the changes he has gone through and continues to go through. Lee writes a blog about living with bvFTD at His hope, he says, is that his first-hand account of living with bvFTD will help others. Read Lee’s story in his own words here.