Living With Dementia From The Experts

IN MEMORY OF A DEAR FRIEND, MENTOR, DAA BOARD AND ADVISORY BOARD MEMBER Paulan Gordon 9/2/1954 ~ 10/2/2021 Every so often someone special comes along in life who has wide and lasting impact on many.  Such was Paulan Gordon, who died much too young of breakthrough Covid on October 2, 2021.  She leaves an enormous hole in our hearts.  She also leaves a lasting legacy of how to live with dementia with vigor, positivity, and grace. Paulan was deeply involved […]

It is estimated that 1 in 2 people in the U.S. have a chronic medical condition and 96% of these people live with an Invisible Disease (JP Thierry 2013).  An Invisible Disease is an umbrella term for a disease or condition that is not visibly noticeable – a hidden condition, which can cause severe pain, cognitive impairments, extreme fatigue, constant illnesses, depression, or a variety of other impairments. Living with an invisible disorder often creates the added challenge of dealing […]

Mike Belleville. He is living with Lewy body dementia. What does a day in the life look like for a person living with dementia?  It obviously varies depending on the progression of the person’s dementia. Although I was diagnosed 8 years ago at the age of 52, I am still thankfully experiencing early symptoms of Lewy body dementia.  I am challenged on a daily basis with a rollercoaster ride of feelings – feeling great in the morning to being completely […]

by Margaret Anderson “I am so blessed to have known your dad….  I watched his joy and gratitude for each day and everything it offered… He taught me how to live, and I shall miss him terribly but I will remember.”  A friend wrote this to me when my Dad, Earl, died.  Dad, who had dementia, lived with me for his last nine years – from age 91 to 100.   Her words reflect so much of those years –  years […]

  It recently occurred to me that A.A. Milne had an understanding of dementia when he created Winnie-The Pooh.  Throughout the exciting stories of The Hundred Acre Woods this “chubby little cubby all stuffed with fluffy” often mentions his forgetfulness, cognitive impairments and not being able to say what he wants to get across.   Although some phrases used in 1929 to describe dementia (such as “a bear of very little brain”) may seem unacceptable today, the stories often describe […]

By Deborah Shouse, writer, speaker, editor, and dementia advocate. One by one, we say hello via video conferencing, writers, artists, and arts advocates from all over the country. One sculptor enriches the visual aspects of our meeting by strolling through a museum, giving us occasional glimpses of vibrant art. We meet another artist’s dog. Via video, we see each other’s offices and learn each other’s names and goals. Some of the participants are living with dementia; some are not. All […]

The DAA thanks our friend Laurie Scherrer for allowing us to re-post this from her Dementia Daze blog   Dear Teenager, To answer your questions, “What does dementia feel like – does it hurt?” I want you to think back on some of the places we went. When we went to the fun house with all the mirrors everything was funny looking and out of proportion. Although we could tell it was us, it just didn’t look right. At the […]

by Robert Bowles, Jr., DAA Leadership Board Reprinted from http://lbdlivingbeyonddiagnosis.com/my-blog/lessons-to-learn-with-dementia Sometimes doom and gloom are preached about dementia.  Often I hear people say there is no hope after their diagnosis of dementia.  That is likely a fairly normal response.  Our world has been turned upside down.  Do we stay in that mindset or do we seek to LIVE LIFE TO THE FULLEST.  My decision was to follow a process of learning and finding purpose after my diagnosis of Lewy body […]

“Every man is worth just as much as the value of the things he’s set his heart upon.” Marcus Aurelius Alexander “Sandy” Halperin, DDS,  retired dentist, author, entrepreneur, public servant, and person living with dementia has, for the past three years, been featured in CNN segments presented by Dr. Sanjay Gupta. Sandy has chosen to not allow dementia to define him. Indeed, his love of life, family, and advocacy for others living with dementia, along with his positive outlook, determination, […]

by Sheila, a mother living with early-onset Alzheimer’s dementia After my father passed away in ’99, I went into a depression. Coincidentally, at about the same time, I started getting Alzheimer’s symptoms. My daughter, Dominique, says it was like I was going into a daze. In addition to my other symptoms, I found myself having these episodes where I would just start crying out of the blue and I would have to shut myself away where people couldn’t see me. […]

You see me , and yet you don’t know me? You hear me, and yet you ignore me? You talk about me, and yet, don`t talk too me? You laugh at me, yet i am not Funny? You Pity me, and yet know nothing about me? You whisper about me, and yet i can hear you! You dress me, and yet never ask me? You feed me, and yet i dont feel hungry, You wake me, and yet i am […]

“I want to be remembered for my spirit, my commitment, my determination as one of the first persons to add a voice, a presence to something that was previously just a diagnosis” — Richard Taylor, Accepting the Carter Williams Legacy Award at the Pioneer Network Conference, August 13, 2009 Richard Taylor was famously known by his friends and colleagues as starting conversations, speeches, and emails with “hello”.   Richard passed away at his home from cancer on Saturday, July 25th. Al […]