The Unexpected Gifts of Lewy
By Heidi Ritzel on Jul 02, 2015

My father is thoroughly enjoying his lunch. Bite after bite, he raises the fork from the plate to his mouth, chewing every bit of food before swallowing. He doesn’t pause too long between bites becaus... Continue Reading »

My husband
By Barbara DeCello on Apr 13, 2015

My husband was diagnosed in 2010 with Lewy Body Dementia. He is and has always been my rock. Lately his Dementia goes in and out of what I call stages of normality and confusion. My heart breaks eac... Continue Reading »

The Power of Puzzles
By Mindy Dalgarn on Apr 06, 2015

Dad, who celebrated his 90th birthday last April, was diagnosed with Lewy Body Disease in 2001. He was 76 years old. Although he became increasingly confused and frail, he was always the kind and soft-spoke... Continue Reading »

I'll call it
By S Beisler on Feb 19, 2015

The fluctuations seem to happen more regularly now. If anything is certain with Lewy Body it is the total uncertainty of the thing. I have quit trying to figure things out. Trying to chart patterns... Continue Reading »

LBD and my experience
By Sandy Reuter-Forbes on Feb 07, 2015

My father passed away May 29th, 2014. He was diagnosed with LBD after a incorrect diagnosis of Alzheimer's. Form the onset of symptoms to his death was about 12 to 13 years. With the last 5 being wher... Continue Reading »

It is well with my soul
By Carrie Brueck on Feb 05, 2015

On a sunny day, five years ago, Jude crawled around with Buddy, on the kitchen floor. As Jude woofed and crawled while Buddy skidded on the vinyl around and around the kitchen island, my mom broke int... Continue Reading »

My father and his LBD journey
By Sandy Reuter-Firbes on Feb 05, 2015

My father passed away May 29th, 2014 from LBD. He was diagnosed approximately 5 to 6 years prior. But he showed symptoms for 4 to 5 years before that. my mother was his caregiver the entire span of hi... Continue Reading »

My experience with LBD
By Colleen Mahoney on Feb 04, 2015

A terrible disease that rips away a persons dignity and independence. My father passed away on 7/15/14 from end stage lung cancer, but was in the hospital in the week prior due to a fall and subsequen... Continue Reading »

A Noble Soul
By Geri Greges on Feb 03, 2015

My best friend and husband John Greges died on September 3rd 2012. He was 73 and had suffered from many ailments and then for a lot of years Lewy Body Disease. It did him in and he went through a lot bu... Continue Reading »

It looks pretty, too.
By Anonymously on Feb 02, 2015

I awoke in the middle of the night to my Mom talking loudly. When I arrived at my Mom’s bedside, she smiled sweetly at me and whispered, “Hi.” She was still tucked into her twin bed in the forme... Continue Reading »

The End of the Journey
By Mary-Jane Horvat on Jan 02, 2015

My dear husband has been gone since December 8th. I have struggled to write this. Started and stopped. Wondered exactly what to say….it is profoundly difficult for me to put into words how I am feelin... Continue Reading »

What LBD Can't Do!
By Joney Caudill on Dec 28, 2014

Calvin and I would have celebrated our golden anniversary this past December third. In 1964. we were waiting for my eighteenth birthday. I was 18 and he was 20 when we married. He was a sailor in ... Continue Reading »

My Beautiful Mom
By Julianne Orr on Nov 24, 2014

I lost my mom and best friend on July 21,2014. She had struggled with Lewy Body for 5 horrible years. At first they said Parkinson's, then Alzheimer's, then dementia,who knows what! I watched her da... Continue Reading »

The Wedding Day that Almost Wasn't
By Shannon on Oct 09, 2014

I got a call from my mom one month before my wedding, "Your dad fell and he can't walk." She reluctantly had to put him in a nursing home for two weeks to recover. Selfishly, I panicked, thinking m... Continue Reading »

Loss of my Rock
By Donald Mc Cormick on Oct 09, 2014

I lost my rock of 50 years on 9/27/14 to respiratory arrest caused by Lewy body dementia. My Marie and I had a beautiful life until Mr. Lewy decided to ruin it. Ten years she fought Parkinson's and LBD... Continue Reading »

My angel
By wendy Vineall on Oct 08, 2014

My mother was diagnosed with LBD in 2011 after having been first misdiagnosed with Parkinson's. She first had issues with balancing her checkbook and eye problems both that we thought were caused by he... Continue Reading »

Where Did He Go?
By Sue Cohen on Oct 08, 2014

My father passed away on Dec. 6, 2014, of sepsis that we didn't know was happening - because he never complained. We first noticed signs that seemed to veer away from the Essential Tremor many in ou... Continue Reading »

When did it all start?
By Sandi Hicks on Mar 03, 2014

I still look back to try and figure out a timeframe of the progression and why I wasn't able to see something was wrong sooner. In November of 2007, Frank got into his first of three car accidents... Continue Reading »

By Joyce on Jan 08, 2014

I am sitting here alone in my room and have just read Teresa Thompson's very sad story that is almost a copy of what I am living.. In 2007, my spouse of 20+ years was diagnosed with Parkinson and the... Continue Reading »

The Dementia Few People Know About
By Barbara Kadlecik on Jan 06, 2014

The Times-Standard published a story about Barbara and Sam Kadlecik called "GRAY MATTERS: The dementia few people know about" written by Carol Harrison. This story was part of Barbara's efforts to rais... Continue Reading »

Tuesdays with John
By Brad Sheeks, c/o Audrey Fatula on Jan 04, 2014

Many of us have either read or heard of the book, Tuesdays with Morrie, by Mitch Albom. He wrote of his weekly visit with his college professor who was dying at home of a terminal illness. As it ha... Continue Reading »

By jeannette on Dec 29, 2013

No, thank you, is my response to LBD. However, some choices are out of our control. You don't even know that the battle is upon you until the invasion is well underway. Unfortunately, there isn't ... Continue Reading »

My Dad My Hero
By Ashley Corsetti on Dec 22, 2013

I lost my Dad June 28th this year. He was 62 years old and supposed to walk me down the aisle this year. As I plan my wedding I can not help but wonder what went wrong. And as I research more and mor... Continue Reading »

By Pam on Dec 08, 2013

My husband, George, passed away on Nov. 22, 2013 from LBD. He had been diagnosed with Parkinson's Disease in Nov., 2005. From the beginning he had experienced dreams in which he would flail his arms abou... Continue Reading »

He Always Knows
By Audrey Fatula on Nov 25, 2013

Funny, smart, caring not a mean bone in his body. We are a blended marriage; now married for 17 years. John is very generous and I, being independent felt a little guilty when he asked me to retire a... Continue Reading »

Maxine - an acrostic poem
By Andrea Bagnell on Nov 14, 2013

Maxine L osing you to this disease is beyond painful and paralyzing E ach day wondering what will be… W aking up with angst and longing to have real conversation and banter Y ou are now like m... Continue Reading »

A Fast Onset LBD Journey: He Is Still In There
By Elizabeth Dunbar on Oct 28, 2013

Dad started working when he was 10. You see, many little boys. born in the Great Depression and growing up though the WWII years started looking for their first pennies early in life. Dad's paper rout... Continue Reading »

The Journey
By Sondra Torchia on Oct 17, 2013

To all those who stories I have read today my heart goes out to you and your love one. Even twenty months later it is still difficult to review our 68 day journey. For now let me just share a few importan... Continue Reading »

By Mary Alice Erickson on Oct 17, 2013

My Father, Butch was only 72 years of age. In January of this year Butch started showing signs of short term memory loss and issues with walking. He was admitted to an area hospital on January 31st wher... Continue Reading »

Trying to Remember Our Lives Before Lewy Body
By Teresa Thompson on Oct 17, 2013

Sept. marked one year since my husband of 26 years Mike passed away from Lewy Body Dementia. The previous three years were the hardest of my life. Mike's symptoms really began to appear on a regula... Continue Reading »

My husband is at rest now
By kimberly gray on Oct 16, 2013

I met my husband about 10 years ago. We got married in 2006 and then in 2009 we found out he had Lewy body... We just lost him on Aug 3 2013. Randy was 56 years old and I pray every day they find a cur... Continue Reading »

Gone a Year, Not Forgotten
By Kathy on Oct 16, 2013

It's a year ago next week my dear husband Ben passed away after four years with LBD. I knew something was terribly wrong when I found him at the back door with a pistol in one hand and 911 on the phon... Continue Reading »

Why we have to be educated
By Helen Bishop on Oct 15, 2013

Three weeks ago my husband had an episode (like a seizure but we're not sure yet) and the doctor who saw him (at a major teaching hospital) did not know what Lewy body was. I explained it to her. Whil... Continue Reading »

Single mother of 3
By Joan on Oct 05, 2013

My husband Phil and I have been married for 15 years. We met and started our family later in life than most. He is now 51 years old and our two daughters are just 12 and 11 years old, I feel as if h... Continue Reading »

Never Give Up: My father's legacy
By Alison Desir on Aug 24, 2013

A little over a month ago, my parents picked up and moved down to Florida. It happened very fast and was decidedly the best decision for everyone. It has allowed my father to have access to 24 hour car... Continue Reading »

father with LBD
By Justin on Aug 18, 2013

My father (67yo) has recently been diagnosed with LBD - well the specialist keeps talking about LBD, although we initially thought it was parkinsons. But the symptoms match what others have said re LB... Continue Reading »

A Disease Masked by Many Different Symptoms
By Marci Hirsch on Jul 30, 2013

July 21, 2013, I lost the love of my life. He was only 59. We have been together for 10 years and married for the last 5. When we met ten years ago, he was such a strong personality and had endless energy... Continue Reading »

May 2013
By Edith Kaplan on May 18, 2013

Please hurry the research to help people with this disease! My husband, Robert, cannot get up out of a chair by himself but when helped up he can walk. The aide and I walk him through grocery stores-han... Continue Reading »

My husband of 34 years
By Diane Calderon on May 16, 2013

My husband of 34 years is suffering from LBD. This was a man who had always been strong, hearty, active. He worked from the time he was a poor kid in Mexico at the age of 11 at a small store to retirin... Continue Reading »

How Is Patrick?
By Susan McKnight Dougherty on Mar 05, 2013

One of the things that attracted me to Patrick Dougherty all those years ago was that he always treated me as an equal. He would engage me in conversation and actually listen to what I had to say. Tha... Continue Reading »

Gramma Evelyn
By Laurie on Feb 18, 2013

My mother, Evelyn, was recently diagnosed with Lewy body dementia. She had always been a very independent lady and lived by herself ever since I was married in 1988. She was an Avon Lady for over 30 years... Continue Reading »

A hard Beginning of My Life
By Tristan Hancock on Feb 07, 2013

February 2009 My father has been diagnosed with Parkinson's disease. My mom was telling me about all the symptoms of it and what it will cause in the future. I wasn't too worried about it because I didn'... Continue Reading »

What a Journey
By Don Mc Cormick on Nov 21, 2012

Hello, ,My name is Don and I care for my wife of 49 years Irene (Marie). Marie was first diagnosed with Parkinson's in 2004. Then in 2008 they changed it to Lewy Body dementia. As mentioned in other storie... Continue Reading »

The Lewy Body Roller Coaster
By S.B.B. on Jul 18, 2012

My mother - J.E.T - was originally diagnosed with Frontal-temporal Dementia in early 2011, but she has since been diagnosed with Lewy body dementia. However, I have used the word "diagnosed" for lac... Continue Reading »

By Althea on Jul 13, 2012

My dad was diagnosed with LBD several years ago. It's hard to see a once strong, independent, vibrant man slowly deteriorate He's not used to family, friends, and caregivers to help him with basic tasks... Continue Reading »

undetected causes
By Darrell Sekin on Jul 10, 2012

A note from LBDA: One caregiving topic that isn’t addressed often in LBD is quality oral care. Infections and pain can worsen behavioral problems, so good dental hygiene and care is part of providin... Continue Reading »

Racing Toward a Miracle
By Jim Haugen on Jul 10, 2012

Racing Toward a Miracle I look for a lost piece of paper in my messy den, Happen across an envelope of pictures, A hiking trip to Banff five years previous, Rush downstairs to reminisce with my wife... Continue Reading »

Making a Difference
By edith kaplan on Jun 17, 2012

In 2008, my husband suspected memory loss. I took care of him until a doctor insisted he take risperidone. Two days later he collapsed and went to hospital. That was his last day home. One psychiatris... Continue Reading »

An epiphany
By Lisa Cooke on Jun 15, 2012

We just returned from the Cleveland Clinic. My husband's meds weren't changed, which is a good thing. Anytime they don't need to increase anything, I always figure that's good. While making the 5 hou... Continue Reading »

Lewy Body Unknown for Years
By JoAnn Doyle on Apr 24, 2012

Lewy Body Unknown for Years Our father had Lewy Body Dementia for at least 6 years without us realizing what was wrong. We thought his symptoms were just from normal aging since this all began whe... Continue Reading »

Most Amazing, Wife, Mom, Grandma
By Lynette Landherr on Feb 16, 2012

Grandma's Last Fight A face that is always on my mind, A smile I have seen a million times, Two eyes that would light up the sky at night, Until that last battle you could not fight, The day wa... Continue Reading »

My Dad - Herb
By Val on Sep 21, 2011

Dad was such fun, even the Lewy Body dementia didn't take that sparkle from his eye right up until near the end. He passed away January 10, 2011. It was a slow progression, almost seven years from it'... Continue Reading »

August 6th
By Joanne G. Gorney on Aug 25, 2011

August 6th, 2011 Happy Birthday dear Dad Today a party was to be planned Food, family and friends Laughter, memories and stories You were to turn 75 years old Your life is what we were to celebrate Unfortunatel... Continue Reading »

Living With Lewy
By Janet Colello on Aug 16, 2011

As with many, my husband, Jim, was diagnosed first with Parkinson's in 1996 by his neurologist. Jim lived a fairly normal life except for falling a lot and he could still play golf, his passion. He practice... Continue Reading »

A Poem
By R. Hollis on Aug 06, 2011

My partner was diagnosed with Lewy Body this year(2011) in April. The rapid decline in his health and abilities have changed my life. Here is a short poem I wrote for him last night as I was reflectin... Continue Reading »

split personalities
By betty clemens on Aug 06, 2011

My husband and I were both suffering from Post Traumatic Syndrome when we lost our home in Katrina. We moved from New Orleans to Knoxville to be near our daughter. Then, in 2006, his symptoms were diagnose... Continue Reading »

what have you done with my mom
By tammy Croft on Aug 05, 2011

My mother was diagnosed with Lewy Body in 2006. It is horrible. I don't think I can describe everything that I feel. My mom no longer recognizes me. I feel I lost her sometime ago The anger outburs... Continue Reading »

August 6th, 2011
By Joanne on Aug 05, 2011

August 6th, 2011 Happy Birthday dear Dad Today a party was to be planned Food, family and friends Laughter, memories and stories You were to turn 75 years old Your life is what we were to celebrate Unfortunatel... Continue Reading »

From planning a wedding to a funeral?
By allison on Aug 05, 2011

My fiance who is 63 was diagnosed with Parkinsons months ago. I noticed memory problems, simple things he couldn't remember how to do. Then one night he saw "people" in our house, lots of them. Fro... Continue Reading »

When Did This All Happen?
By Diane on May 17, 2011

I sit and think, "How did we get here?".... I'm 21 now, my dad, 79 was diagnosed with LBD about 8 years ago. It started off with missing a step here and there, losing direction, forgetting a name - bu... Continue Reading »

An Open Letter to My Loved One's Doctor
By Richard Mueller on Apr 02, 2011

Dear Doctor: My loved one was brought to your hospital because of a fall. During the course of his examination you discovered that he had walking pneumonia and admitted him to the hospital. Becaus... Continue Reading »

A Good, Clean, Healthy Life & then...
By Joan Gillespie on Mar 25, 2011

My wonderful husband was a high school track & football athlete. Served 3 yrs in the US Army, fathered 3 healthy children, loved Canadian cold water fishing & camping, didn't smoke or drink (a beer occasionally)... Continue Reading »

By shelley hulton on Feb 17, 2011

On 2/11/11 my dad was brought to the hospital after a fall in the shower. After his wife noticed "jibberish" speech and recalling his orthostatic hypotension that had been occuring for several months an... Continue Reading »

This is not how I pictured it at 26
By Carrie on Dec 12, 2010

Mom was initially diagnosed with Alzheimers almost two years ago in February 2009. She was 63. I was 24 years old and recently engaged. We (my Dad, sister and I)were told to expect a slow steady declin... Continue Reading »

History repeats
By Lynn Calvird on Dec 03, 2010

We moved in with my grandma two weeks before my seventeenth birthday. My mom was determined to take care of her and keep her out of a nursing home. At that time grandma was diagnosed with Parkinson’... Continue Reading »

My Journey
By Debra Ouellette on Nov 01, 2010

I just started writting and this is a paragraph of it........ So start with the family doctor we did, he put a consult into a Geriatric Psychiatrist? I kept thinking why geriatric she’s not old enoug... Continue Reading »

In the beginning...before LBDA
By Jan Childress on Oct 11, 2010

THE UNKNOWN - In 2002 my father was diagnosed with Lewy body disease (LBD) at the UC Davis Alzheimer’s Disease Center in Sacramento CA. We had no idea what LBD was at that time and there was littl... Continue Reading »

La segunda infancia cruel
By Janet on Sep 28, 2010

(English version of this story coming shortly...) Mi padre siempre fué un hombre fuerte,autodidacta,luchador,un hombre duro y recto en lo que al resto se refería y muy permisivo con el mismo. Au... Continue Reading »

My Hero
By Trish on Sep 01, 2010

My father was the greatest person I have ever known. He was kind – I can never remember him saying a negative thing about anyone. He was funny – not in the most obvious way, but in the best way imaginable... Continue Reading »

A life without cause is a life without effect
By Coleen Greco on Aug 27, 2010

What do you mean he lost the car? He grew up in that town how could he misplace the car? This was the single biggest incident that had happened to date. The other signs were far less obvious and coul... Continue Reading »

Two Heroes
By Darlene on Aug 24, 2010

My Dad was diagnosed with Lewy Body Dementia in the summer of 2006. Before that, he lived his life on his terms, did things his way. He was smart, self-taught, loved by many and respected by more. Durin... Continue Reading »

Between Yesterday And Tomorrow
By Cleve on Aug 24, 2010

My beautiful wife of 25 years, Kay, was diagnosed with Parkinson's Disease in May, 2006. She was 52 years old at the time but she'd had symptoms for about 2 years before we got the diagnosis. Th... Continue Reading »

My sweet, passive Dad changes
By Sally on Aug 11, 2010

Everyone in town knew my Dad as a sweet, passive man who volunteered, especially with the elderly. About 15 years ago, he began to change; we joked that he was finally getting assertive. Assertive turne... Continue Reading »

Millie was strong right up to the end
By Laraine on Aug 03, 2010

My mother, Millie had Parkinson's for years, and was diagnosed with LBD about 2 years ago. Millie was a very strong woman, having had multiple surgeries (including bypass surgery), cancer, diabetes an... Continue Reading »

Who is Bill?
By Jean Maas on Jul 28, 2010

Who is Bill? There were many times during the last year of Bill’s life that I asked myself that question. The wonderful, kind, loving man that I had married 12 years earlier was vanishing bit b... Continue Reading »

He taught me all he knew because...
By Nancy on Jul 28, 2010

Dad called me one day to help him put the bag on the lawnmower. He said he taught me all he knew so I could reteach him when he got old. At the time we laughed. I went home with tears streaming down m... Continue Reading »

For Love of the Game
By Shana Gibbs on Jul 26, 2010

My mother and I walked down the halls of the assisted living home. She turns to me and mustered up the words any five year old would, “What time is your mom coming to get you?”. For years, I battle... Continue Reading »

The dog was a Capgras* victim!!
By Victoria on Jul 16, 2010

Oh! The light has shed! Early on in the journey, my mother had frantically called me from her condo to tell me that the groomer picked up Sophie and never brought her back. This was before we knew ho... Continue Reading »

Letting My Mother Die
By Jason M. Rubin on Jul 07, 2010

My mother died in 1999, two days shy of her 66th birthday, after suffering for about 10 years with LBD. Of course, we didn't know it was LBD until very near the end because neither her primary care physicia... Continue Reading »

For Better, For Worse
By Cindy on Mar 02, 2010

When Ted came home from his brother-in-law's funeral several years ago, he told me that he wanted us to leave for Europe as soon as possible. His sister's husband was six months from retirement when h... Continue Reading »

My Father
By Amy on Feb 04, 2010

Like my dad, I feel that I too have the disease. I am forever bound to Lewy Body Disease... Continue Reading »

Whom Do I Ask Now?
By Tami on Feb 04, 2010

A number of years ago, a close friend of ours called to let us know that his daughter-in-law had died of breast cancer. His son was left with two young daughters to raise on his own. I’ll never forge... Continue Reading »

Dreaming of Mom
By Elisabeth on Jan 20, 2010

My mother began to lose the core of herself during the last year of her life. I noticed this when she stopped reading, couldn't write her Haiku anymore, couldn't balance the family check book. When Mo... Continue Reading »

Creative Materials

LBDA invites you to submit a personal Lewy body dementia story or photograph for possible inclusion in our Web site,, e-news or other publications. Please click here for our policies regarding the submission and use of creative materials.