Blogs

These blogs and vignettes are shared with us by members of our community whose unique perspectives offer support, encouragement and truly honest responses to others going through similar experiences. We appreciate their generosity in sharing some of their intimate thoughts, emotions, and experiences, and recognize that it is through this generosity that we will all find the comfort and support of community.

If you have a blog or story you would like to share, please contact us at info@theaftd.org.

Blogs

FTD Doesn’t Bring Me Flowers: Living with FTD – Cindy Odell has been living with FTD since 2011. In her regularly updated blog, she hopes “to offer information and insight into dealing with having FTD, or dealing with someone who has it.”

Aphasialand – This poignant blog series, written in German by Silvia Teich, details the difficult struggles that FTD can bring to a family. Ms. Teich is a wife and mother whose husband was affected with Primary nonfluent primary progressive aphasia in September 2016. The couple have two children aged 5 and 15, and live in Berlin. Read Silvia’s blog posts here.

Songs Without Words – Written by Sarah Scheuermann, who passed away from PPA in 2016, this well-written and thought-provoking blog series gives the reader insight into how it feels to battle FTD from the perspective of the person affected. Read Sara’s beautiful blog posts, poems and verses here.

Go to Your Corners and Come Out Loving – This blog was written by Ada Gerard, wife to Gary who at 65 years old, was diagnosed with FTD. Still working full-time as Executive Director for West Coast University, Ada shares her daily struggles with coming to terms with her husband’s diagnosis.

The Unlikely Caregiver: Caregiving as a twenty-something daughter – When Abigail was 24, she moved back in with her parents, noting, “It wasn’t because I was broke or unemployed, instead it was because my mom’s Frontal Temporal Lobe Dementia was progressing quickly and my dad needed backup.”

Lydia’s FTD House – Lydia’s sister blogs to create a support community for all to share FTD-related experiences and information. The ultimate goal is to help others recognize the symptoms of FTD and shorten the time to a correct diagnosis and help.

Chasing Dignity– Cindy, whose mother-in-law has FTD, blogs about her family’s journey coping with the disease and adjusting to their new reality.

Frontotemporal Degeneration: Tumbling down the rabbit hole – Alice, whose husband was recently diagnosed with FTD, writes about her journey.

A Nice Day for a Hike – a blog by Brandon and Katherine, as they hike the 2,200 mile Appalachian Trail in memory of Brandon’s dad, who had FTD.

Dementia: Stuck in Between – a thoughtful blog by a group of 20- and 30-somethings who have a parent affected with FTD.

Putting One Foot in Front of the Other – a blog by Nancy Carlson, author/book illlustrator whose husband has FTD.

FTD is my niche (apparently!) – a blog by Deborah Thelwell, whose husband has FTD.

Dr. Patty’s Blog – Dr. Patricia Bay writes about her husband’s recent diagnosis of FTD.

FTD’s Painful Road – a blog by Kendra Gibson, whose mother has FTD/ALS, whose uncle passed away from the same disorder and whose aunt passed away from ALS.

Journey with Dementia – a blog by Cassandra Jones, whose mother has semantic dementia.

The Rookie Caregiver – a blog by writer and PR professional Elaine Soloway, whose husband was affected with primary progressive aphasia.

FTD Isn’t Just Flowers Anymore – a blog by Kelly on the West Coast about her affected father.

Rest.Stop.Ranch – an eco-spiritual blog by Mary MacDonald, whose mother had FTD.  This blog features some short (2-5 minute) guided “breaks” with photos, breathing exercises, and other calm-inducing techniques.

Caring Bridge Blog by Lorraine Cox – a blog about her husband’s struggle with FTD.

Matt Matherne – a blog written by Matt’s wife, Amy.  Matt is affected with FTD.

Don’s Daughter – a blog written by Melisa McElmurray, whose father is affected with FTD.

FTD/Dementia Support Group – a blog written by FTD patient Howard Glick.  A first-person look at living with FTD.