What happened to Casie Cathrea Golf

World FTD Awareness 2018-19


Five years past Dx. Husband is non-verbal, neither understanding nor speaking. He cuts his own hair. He eats on five different brand-specific foods. Now he has started wandering.


I am sorry to say that my message is not very positive. My husband gave away $ 1.1 million dollars to a nefarious friend. Money he promised me. Now I will have to sell our house and possessions to survive.

God bless you, and be WARY


West Richland, United States

My 59 yr old husband dx Fall / 2020. After 3-4 years of numerous anger outbursts and losing jobs we started our 4 month journey to this horrible disease.

Brad Strine

I was diagnosed with FTD in 2015 at the age of 58. 💜💜

Sarah Diemart

Taking care of my mother who has this awful disease.

Malissa Smith

My 73 year old loved one was diagnosed with BvFTD in 2018. We believe he started to show symptoms in 2010.


Husband 67 years old Caring for him in home


Husband, diagnosed June 2017 FTD. Initial symptoms: apathy, no empathy, changed from kind and agreeable to terse and uncaring. Now has trouble communicating, can't remember or recognize people, and interacts childishly with others. A former missionary, he delights to talk of the love of God.

Ali & Richard

My husband, Richard was diagnosed with FTD about eight years ago. He lives at home & is, sadly, totally dependent on me. We have been through a lot but life is calmer, if boring these days.
Sending love & support to everyone else coping with this awful disease.


Our story started over 10 yrs ago. Strange behavior. I thought I was the cause. Fast forward to 3.5 years ago and a diagnosis of bvFTD. It's progressing slowly but it's like living with a roommate you don't know and they don't want to get to know you. Very lonely


Bexleyheath, United Kingdom

Noticed symptoms 2011.Went to GP May 2015 referred to Memory Clinic. Diagnosed August 2016. Managed well until Lockdown 2020 then an almost overnight deterioration. Hospitalized 4 times in June / July then discharged to residential home awaiting assessment. Now in nursing home.

Sue Ochsner

Cold Spring, United States

Husband diagnosed at 69 yrs old. Early stages.

Janet Stone

Slater-Marietta, United States

My husband, who was a creative, mechanical genius, now sits watching TV all day and cannot use the remote.
It is sad.



My husband Ken is 54 yrs old and diagnosed with bvFTD in 2017. He had symptoms beginning in 2013 and has had slow progression.

Stephen Hobday

I am putting my husband on the map to help awareness. He was diagnosed with bvFTD two years ago, after a misdiagnosis of Alzheimers and many years of symptoms and looking for answers and help. We have a great nuerologist now and meds that are a great help in keeping him home.


Feura Bush, United States

My husband was diagnosed on November 2020 with bvFTD he's 59 and boy it's been a ruff road


My husband was diagnosed in December with bvftd. Wish I had local support group

Quick Mary

Husband diagnosed bvFtD 09/19

Karen Henning

Grosse Pointe Park, United States

My husband was diagnosed with FTD in September 2020. Simply put: devastating.

Margaret Bisset

Maidstone, United Kingdom

Husband diagnosed with bvFTD in 2018 at the age of 74. Looking back over the years I believe his illness started as early as 2001 - lots of other signs along the way but put it down to the aging process - hindsight is a wonderful thing. Very slow decline.

Deborah Perry

South Kingstown, United States

My memoir, "Somebody’s Sister" is about Lyndy and her gradual downward spiral from once serving as a Lieutenant in the Navy to becoming a homeless person living out of an abandoned car. It's about her family’s struggle trying to find a doctor to help us understand what was wrong with our sister.

Maria Pastrana

I have two sisters that were diagnosed with FTD, one at age 56 and the other at 60 side by side in age group of siblings.It is very difficult for me and my family to watch them deteriorate mentally and physically. On valentines I lost my 56 old sister my on Valentine's Day my heart is broken.

Barbara Topolosky

There's no hope for this. If you're one of the people who have it.

Jennifer Lee

I was diagnosed with PPA FTD in December of 2018. In one doctors visit I not only found out my career I loved was over, but also that I had a terminal diagnosis. After the shock wore off, I had to completely relearn to live. Each day I must live in the moment & take it day by day to raise awareness.


I lost my mum to FTD two years ago. I live in Brazil, and my mum was in England, so my sisters took care of her. Finding out about FTD enabled my sisters to pursue a diagnosis, which was essential to my daughter’s authorization to travel so that she could see her grandma.

Carol saloom

I have beautiful story can I snail mail

Jeanne Murphy

I haven't been diagnosed. Previously had 5 aneurysms that were clipped. Have had quite a few falls. Physical abuse to my head.

Michelle Chisholm

My sweet Mike was dx at age 60. His speech and decision making was the first to go. I cared for my gentle giant at home for four years with the support of our five children and families. At about 4 years he had lost all ability to speak and his mobility. Two yrs later he died.

Edward Clemens

Upper Sandusky, United States

My husband, Edward, always healthy and physically fit, at age 61, was diagnosed Feb 2016, after 7 and a half hours of testing and a follow up PET Scan, with BVFTD / PPA.
He was given the prognosis of 6 months to a year. He can no longer communicate but he is still here with us.

Steve Nichols

My wife JoAnn was diagnosed with bvFTD in 2014 when she was 66 years old. She was an active vibrant woman who was the light in any room she was in. She loved life and was the life of the party and made everyone her friend. Her 4 children and her 4 grandchildren adored her. She left us in 2019.

Debbie Cameron

My husband, Casey, was diagnosed with BvFTD in 2015. He died following a 2 year / 9 month battle with this devastating disease. My love and support goes out to those families still dealing with this difficult disease that has no treatment, no approved medications and no cure ♥ ️.

Annerose M Kmoch

San Marcos, United States

I recently was diagnosed with dementia. I am German and the test was in English and I kept translating the number test from English to German and back to English. Doing the test in German, I had no problems.

Kathy Mochel

Half Moon Bay, United States

My husband was diagnosed 3 years ago. It gets harder each day. The symptoms have changed the man he use to be. It's very difficult to be patient with him. I never know what tomorrow brings. I have no help from his kids from his past marriages. That hurts him that they don't seem to care


Mom was just diagnosed, the last 5 years have been unbearable, she is 69.

Dana L Meinhardt

A was working as Psychiatric nurse practitioner and was diagnosed Corticobasal Degeneration July 6th, 2020. On August 10th I resigned.
Looking back had symptoms difficulty writing, word finding and jerking right hand about 1 -2 years that I attributed to my epilepsy.

Carol saloom

I call my Ftd blog finding your own majic

Domenica Rivera

I am looking for information on the disease I'm concerned for myself

Dyanne Iverson

My hubby has it and has been home now for over a year! He won’t get out of bed anymore! He needs total care! He can feed himself still, but will choke if not cut small or he will cram to much in his mouth at one time! He needs to sit up on a wedge pillow to help! I love him so much!

Debbie Gardiner

My husband of 42 years was diagnosed with Early Onset Alzheimers in December 2016. Months later they changed that diagnosis to bvFTD. Neurologists said he most likely had this disease 10 years. His disease progressed rapidly and in July 2018 he passed away after not eating for 13 days.

No team

So they tell you, you have FTD.
After many tests.
It's a term I never heard of. I never heard of FTD all I know is it's fatal. They don’t have any pills or a cure. Once I decided how to live with this, it's not how I died…. but I live.
So far I'm doing ok. Sad at times

Randall Young

Scottsdale, United States

What use to take a few minutes was now taking hours. I was having trouble managing appointments at time completely forgetting I had one. When driving I too often took wrong turns on routes i frequently traveled. I am an ordained Lutheran minister who was lost!
I was diagnosed with FTD at

Christine Gray

My husband, Jeff, changed when he reached his mid-50’s. After 3 years and multiple doctors, he was diagnosed with FTD. I cared for him at home for 2 years but finally had to place him in LTC. He died there 3 years later. He didn't speak for the last 2 years and didn't know our daughters or me.


My oldest brother was diagnosed with FTD in Jan. 2020 & passed away in Mar. 2020. We thought he’d turned his back on our family & we were angry. If someone you love withdraws don’t accept it. Pursue answers as to why. FTD cloaks itself and destroys relationships while it hides.

Haseeb Mohammed


Russellville, United States

I noticed changes in my husband’s speech, memory and attention nearly 10 years ago. He began meds for dementia 5+ years ago and was diagnosed w / FTD in Sept. 2019. I am watching him slowly shut down / his world close in on itself. We are blessed w / family and friends to assist with his care.

Michael A Favazzo

My wife has FTD. In Aug 2015 she had what we thought was a nervous break down from the stress at work, the doctor treated her for anxiety and depression we did this for three years she was not getting better. We then took her to another doctor for a second opinion. Then was diagnosis with FTD

Palak Sanghvi

Clarksburg, United States

My father has FTD and it gas Ben very difficult to see him going through this. Apart from his Emory loss he is loosing his balance and muscle control. He pretty much falls down every day and we are always very worried of him getting badly hurt. He has also stopped using his right hand….


I was diagnosed with this terrible disease. Unfortunately it hits you when your nearing retirement. It's very sad - unfair to patients and families. I just started saving money when we moved to a smaller house, then I was diagnosed with FTD.

Dottie Marshall

2017 My husband became lazy, depressed, withdrawn from life. I tried everything to get him to realize his behavior was ruining our marriage, to the point I wanted a divorce. He stopped doing everything and became consumed by T.V. July 2019 we went to a neuropsychologist. Result, FTD.

Connie Le

Fort Collins, United States

My mom just passed away from FTD. She was diagnosed 12 years ago by a neurologist at the Mayo Clinic in Rochester MN. She died at the age of 76. She showed signs of dementia in her 50s.
She started having trouble writing checks, wandered, had hallucinations, even stopped talking an began wailing

Shirley Bolz

My mom was Diagnosed in January just after her 65th Birthday. Our family is devastated ... the cognitive decline has been fast- she has already lost her ability to speak and live independently. We love her and miss the old her… We are heartbroken. Hoping for a cure or treatment some day.


My “bear” was diagnosed at 59 years old with semantic FTD. The road has been a quite a challenge and I'm not sure exactly when or where that road ends. I do know this, however. This disease is rare and most people have no idea what FTD is. We need our voices to educate people about this disease.

Marva Dix

Please send me current info on this subject. I was diagnosed 2 years ago, but I am alert and oriented 99% of the time. When I do get confused, it is usually due to stress, and can calm myself down by using coping skills I learned when hospitalized after a psychotic episode. I can read / write if conf.


A very good friend & colleague of mine started to develop the first signs of PPA nearly 10 years ago. Sadly, his FTD is progressing more quickly now & is causing him much frustration. He has difficulties in verbal expression, executive function & some obsessional tendencies.

Cecelia Kent

Mechanicsburg, United States

My husband, Joe was diagnosed with Primary Progressive Aphasia variant of FTD 5 1/2 years ago. He just passed away on October 8, 2019 after fighting a long, cruel battle against this devil in disguise. Such a debilitating and heartwrenching way to spend his final years. My heart is beyond broken.

carol almeranti

Farmington Hills, United States

My partner was diagnosed with FTD at age 53; by age 57 I could no longer care for her at home and had to place her in a facility. No memory center is prepared for a physically healthy 57 year old.

Susan Kiser Scarff


Ian Smith

I care for my younger brother who has recently turned 60 years of age.
He was diagnosed in 2013 with FTD.
He still resides at home and if supervised frequently still leads a fruitful life.

Scott Calvert

My wife has been diagnosed with FTD at only 53 years old, so my message of hope is to enjoy every day as much as you can (particularly the good ones) and keep including family and friends in your life and share the good times.

Margaret Beasley

We have an FTD Carers Support group in Tasmania, which constantly inspires me with carers stories of sadness, loss, laughter and resilience.

Maria Emilia

A mi madre de 52 años le diagnosticaron demencia frontón temporal hace 3 meses.


Tammy is 43 years old and the mother of two beautiful girls. She was diagnosed with bvFTD - Behavioral Variant Frontotemporal Degeneration in January of 2019.


Abhi has struggled with semantic variant FTD for more than 10 years. He is now in care but still loves music and food.

David Esau

I was diagnosed with PSP 4 years ago previous 10 years I was told that I had Parkinsons

Leo Broyles

FTD has struck our family twice in the past 10 years My Sister Marcia passed from this cruel, haunting and life ending problem in Oct of 2013 - My Sister Patricia was already fighting this Monster when Marcia past and she passed from FTD in Jan 2019 - both of these beautiful women gone to soon!

billy gascoyne

my father Alex, 68 has FTD. I believe the symptoms started developing 12 years ago. He was known as outgoing, friendly and hard working. He started making poor decisions became socially distant, estranged from family and his young children and interested in collecting junk. there is light in darkness

Christine Hamilton

My Mom, grandfather, great grandfather, uncle and a cousin have passed away from FTD. My Dad cared for my Mom for ten years in their home with help from myself and home health aides. If anyone local wants to talk or needs support, email me at [email protected]


My wife Grace was diagnosed with FTD in December 2014 at age 55. Today she cannot speak, and is unable to care for herself, even in the most basic things (dressing, brushing teeth, etc.). Our savings are being depleted in order to provide the care she needs.


My wife Grace was diagnosed with FTD in December 2014 at age 55. Today she cannot speak, and is unable to care for herself, even in the most basic things (dressing, brushing teeth, etc.). Our savings are being depleted in order to provide the care she needs.

AJ callus

Hallettsville, United States

My wife was diagnosed with bvFTD in 2012 and passed away six years later. Caregiving was my most challenging and loved job I've ever had. I miss Alice so very much.

Steve Zamberlin

My wife Angie was diagnosed with bvFTD at age 45 in 2014. I've been blessed that she is still active enough to take cruises and go to concerts. I continue to try and keep on doing things for her as best I can living in the moment as she cannot thought process or remember the previous day.

billy gascoyne

my father Alex, 68 has FTD. I believe the symptoms started developing 12 years ago. He was known as outgoing, friendly and hard working. He started making poor decisions became socially distant, estranged from family and his young children and interested in collecting junk. there is light in darkness

Phoebe Wu

My husband was diagnosed FTD at the age of 49. He lost his job before the diagnosis and he became apathetic soon after. His deterioration ran almost. His speech, cognition, control of movement, swallowing difficulties, slipped away one after the other. Eventually he died at the age of 57.

Kimberly Chu

Travelers Rest, United States

I'm a stay at home mom with my one year old and caring for my mom with FTD (64, on hospice). My son calls her “Nuh-Nuh” and carries her slippers to her. He smiles at her with endless adoration & helps me see her the way that he does. A hope dusted, effervescent, “HI! Hi ”He’s the first to greet her.

Helen Barrios

My husband Dave was diagnosed in March of this year at 52, only through persistent pushing for a diagnosis. Despite the prognosis, we find ways to love and laugh every day. I want him to be happy, he is my person. We live surrounded by the love of 6 dogs, 17 chickens and 5 goats.


My husband was diagnosed in 2017 with bvFTD at age 57. I believe he’s had it since age 51 with very subtle changes that only I and my mother noticed. He used to be an outdoorsman, patient, loving and funny. With God’s help I’ll weather this storm. I'm very grateful to AFTD for educating me about FTD

Jamie Lee Manning

My mom’s name is Suzy. 73 years old, mother of three, master quilter, and all around awesome gal. She is a retired nurse spending over 35 years serving in variety of medical care institutions. Diagnosed with bvFTD in 2018. Read more about us here: www.brokenandbeautifultexas.com

Susan Illis

Pittsburgh, United States

My brother-in-law, Glenn, was diagnosed with FTD ten years ago, when he was 54.

Yashekia Harper

Greensboro, United States

My Mom developed FTD / PPA (Primary Progressive Aphasia) several years ago.
It took many years to diagnose her because of unawareness in the medical community.When her 3RD neurologist said the words, it was a relief to know what was wrong, but painful to know how it would end. #EndFTD

Mary, Dan Kidder

I was 16, he was 17 in 1973. We married June 1975. Dan went to welding school, taught welding, advanced to robotics. The best dad and grandpa ever. The best husband, & beautiful person. Small summary of a giant, loved life. He lives today robbed by FTD. We miss who he was before 2013.

Ellery Rose

My wife, in 2006, at age 53 became confused and functioning below institutional level.
Her diagnosis of FTD was not until 2015.
She is now an autistic 2 year old. She is hand fed and hydrated, shuffling, drooling. But she is a hoot.
Medicaid supports her home care.
I love our much berated Congress.


My husband has FTD since 2010 when he had 67 years old and I ‘m his caregiver.

Vicki Ax

With Apraxia of Speech, PPA, and PSP, Harold, aged 77, can't speak or write at all. I had thought the onset was about ten years ago with the progressive loss of speech, but realize that it began years ago with a loss of empathy. He is a retired physician. I retired to become his full-time caregiver.

Katherine Beal Haynes

Fair Haven, United States

My dad has FTD. We are all rallying together to make his life the best possible. My parents live in Fair Haven, NJ


This is Mark he had FTD it took us a while to figure out but we knew something was wrong. By the time he was diagnosed it was too late he lost a lot of motor skills the ability to talk, But he never lost that infectious smile and his positive attitude, we were lucky that FTD didn’t take that away


Los Angeles, United States

Diagnosed 14 years ago with FTDbv. In care facility for years.

Marcia Koford

My husband and his sister were both diagnosed with FTDbv over 10 years ago. Although their symptoms manifested differently from one another, both are severely incapacitated, requiring full time care. Neither one has any awareness
there is anything wrong with them and report that they are "fine".


Toby was diagnosed with FTD at age 50. His symptoms began in his 40’s. He currently lives in a memory care facility.

Judith Daniel

My husband was diagnosed with FTD at age 64.

He was a brilliant man who attended Harvard Business School and was a Doctor of Education. He was charismatic and always had a smile and a good joke.

He passed at the age of 69… .. I miss him everyday… Such a devastation to watch him decline.


Cincinnati, United States

My father, John, was diagnosed with FTD four years ago at age 59. It has completely altered his world and ours. Though he is no longer able to do most of what he used to, we still are able to find small moments of joy.

Kim Feller

I first knew something was wrong in 2015. I was diagnosed December 2016. I had to leave my supervisor job of 18 years at the end of 2017. It has been a season of change not only for myself, but for my husband of 42 years . We have had lots of bumps in the road, but we learn and prevail.


bvFTD is difficult in that your loved one denies any issues and others many times don’t see a difference in them because they don’t spend real time with them like a family caregiver does. I am so thankful FTD is finally getting the attention it deserves. Thank you.

Suzanne Brake

My husband Bob was diagnosed with FTD four years ago at age 74. In the beginning he had speech challenges. He is still independent for some activities of daily living but needs tremendous support to manage. I am hoping I can adjust and add support services as required so he can stay home.


High Wycombe, United Kingdom

My father had FTD which was not diagnosed for several years. As a teenager I had no understanding of it and simply found him a difficult person to be around. Keeping open communication between families and helping them understand the features of FTD is vital.

Rosemary Townsend

Leatherhead, United Kingdom

Too little post diagnostic support is available for people living with PPA. Meeting others and learning ways to support communication can help significantly. We are playing our small part by developing local SLT led services at Dyscover.org.uk

Mari Elena

My husband was diagnosed with FTD in 2012. The changes have been difficult, but having Banner FTD Support Group meetings have made the transition a little easier.

Mari Elena

My husband was diagnosed with FTD in 2012. The changes have been difficult, but having Banner FTD Support Group meetings have made the transition a little easier.

Mari Elena

My husband was diagnosed with FTD in 2012. The changes have been difficult, but having Banner FTD Support Group meetings have made the transition a little easier.

Peter van Gestel

Not a great experience, but on the whole I am still smiling with the support of my wife Julie-Anne and family. Age 63.

Melissa Fisher

My dad was finally diagnosed Jan '19. It is not only taking him slowly away from us, but my mom, his caregiver as well. FTD is a disease of the family. It's worsened due to them living in Hawaii where support and services are non-existent. It's unacceptable. We must improve this.


My Father developed FTD in 2013 and died in 2015. It was an aweful and confusing time. I accompanied him to many appointments trying to figure out what was wrong. He was diagnosed with Alzheimers… and it kept getting worse. The medical system finally diagnosed it as FTD months before he died.

Elda Benson

West Valley City, United States

This is my younger brother with our mother. He was diagnosed with FTD in 2008 at the young age of 44. The doctors gave him 12-18 months to live. Due to my Mother’s love and care, he stayed with us for almost three years. During that time we saw him decline to a person that broke our hearts.

Elizabeth Nocero

Cincinnati, United States

My Mom was diagnosed with BVFTD at the age of 84. She lived alone and was a dancing teacher and in amazing health. Once we were told what she had, we realized she had probably had it for some 20 yrs. She passed 4 1/2 years after being diagnosed. Just shy of her 89th birthday.


Even w / Lydia's FTD / PPA diagnosis by head of theAFTD.org's Medical Advisory Committee AND copies of her medical records, one So Cal hospital near UCLA had a doctor who said she was a schizophrenic, thereby screwing our family's ability to get her into a nursing closer home. Had her on 15mg haldol.

Michelle Kelly

In December, 2016 my husband came home from work and told me he was losing his job and didn't know why. Thus began our FTD journey. He was diagnosed with bvFTD in April, 2017 at age 58, developed ALS in May, 2018 and passed away in November, 2018 at the age of 61. I miss him every day!


Jacksonville, United States

My wife started having changes at 48 when our son was born. Normally very competent and kind, she began having difficulty with things she used to do. She also began to tune out when our friends were over and would turn on the tv instead of visiting. Weird behaviors started soon after.

Gary Mueller

My wife was Diagnosed with dementia in late 2013 at age 52. In 2015 with bvFTD. She now requires 24/7 care. I took an early retirement March of 2015 at age 55 to care for her. I hope to keep her home until the end.


My wife was diagnosed with FTDbv 18 months ago at age 55. She was placed in long term care on August 15. Can’t believe how quickly this cruel disease has progressed. Still in shock.

Emily Ingalls

Cleveland Heights, United States

Tracey, diagnosed 11/2016 with FTD PPA. We hope that as we travel, giving talks and workshops about living with FTD, we will ignite understanding of the disease and help create a dementia-friendly world.


Freehold Township, United States

My mother got ftd in her 70s which is later then many. Accrued a lot of debt before anyone realized how out of control her spending was. Memory was not impacted till much later. Judgment issues first.

Constance Madeleine Archambault

My husband died @ 76 from FTD semantic variant./aphasia, having been diagnosed 4yrs. prior. His symptoms started 30 yrs. prior with depression n aphasia n little personality chgs. He knew he was chng. N gradually he withdrew from everybody n everything until he could no longer walk, talk or swallow

Kelly Kenny

On June 14, 2019, I was told I had Frontotemporal dementia. Worst day of my life!

My wife and I, decided that we were going to make the best of the time we had left together and make as many memories, possible!

And that is what we’ve done ✅


San Antonio, United States

My husband was diagnosed at 53. He has days that he believes it. Most days he says I'm crazy. He began acting unusual, saying violent things towards me. We went to the Dr. Hey was so sure, he was fine. He kept saying it was me. A MRI later and a trip to a neurologist, he wasn't fine.

Tanya Veeman

My beautiful, intelligent and living mother passed away from FTD in 2016.

Donna Smith

My amazing mom died from FTD.


My husband was diagnosed with Bulbar onset ALS August 2015 followed by FTD 5 months later. He passed June 2017. FTD was actually a blessing for him, it made his journey with ALS much easier even though it shortened his life. The best help is a support group for family of ALS / FTD patients.

Willis Bill Kelley

My wife sherry is in year four from diagnosis. She is now 66. She is pretty much totally disabled, very few words come out legible, she can't walk, dress, clean, can't hold fork or knife ,. She was so healthy before this, she hadn’t seen a Dr. in over 20 years. I'm a full time care giver for her.

Rebecca Whitney

Pauline, my mom was diagnosed at 64.We were fortunate to be able to care for her at home. We were able to focus on what was left not what was lost. She passed in 2016 at 73, we are blessed to be able to share her journey.


My husband, Terry, and I have been married 37 years. He was a VERY successful attorney in a small town in Minnesota. He was diagnosed in 2017 at the age of 62 and is now at adult day activity center each day. His ability to do anything is pretty much gone and he is incontinent.

Sharon Hall

My husband Rod is going into year 5 of bvFTD. Our life has changed dramatically. Our retirement has been on a very different track than we dreamed about. Rod now attends a day center 2 days a week and he really can't be left alone at home.

Deborah Thelwell

My husband Alan was diagnosed at 52. He died 5 yrs later at 57. It is difficult to describe to anyone who hasn’t lived with FTD what a painful, heartbreaking experience it is for all involved. I am grateful for our 38 years together and for the support of the (sadly) growing FTD communities.


My dad was diagnosed with bvFTD about two years ago. Of course it reared it's ugly years before. Dad is 72.

Michelle Purdue

My sister Susie was diagnosed with FTD at 42 years old. We noticed early signs when she was in her late 30s but attributed it to depression and stress from her work in the Sheriff’s Department. Now at 45, she is living in a residential care facility on hospice.

Lucha Swanson

My aunt and mom have been diagnosed with FTD mutation of the gene c.900_901dup. My aunt passed away at age 57 and my mom is currently 68. She was diagnosed last year although it took us two years to realize she could have the same disease, it was the language deficiency that moved us to act.


My mom was diagnosed a little over a year ago although we believe there were symptoms up to 4 years prior. The changes have been dramatic and swift. It is devastating to watch a loved one become unfamiliar and uncommunicative. The prolonged grief is at times unbearable.


My mom was diagnosed with FTD in 2013 and passed away in 2015 from complications of FTD. She was misdiagnosed for years. They kept treating her for depression and anxiety. It all seemed like it changed overnight. She became a different person. She was only 68.

Melissa Lepage

My husband Sylvain was diagnosed feb / 2018 with BvFTD he is 47 now. We have 5 children and 3 grandchildren it's been hard for everyone. For about 2 years now we have noticed changes in him. So much of him has changed and I could only imagine how he must feel. We all just take one day at a time.

Danielle Barrette-Marcuccio

My husband Giovanni Giacinto Marcuccio aka “John” was diagnosed with FTD at 61 years of age in 2015. He’s originally from Sudbury, Ontario, Canada, a mining town. He coached and played soccer for 25+ years and remains active to this day. His FTD has progressed and he now unknowingly speaks Italian

Mitzi Flournoy

My mom was diagnosed with Behavioral Variant FTD in 2011. She was 77. No history of any dementia in her family. Her mother died at age 100. At first, her family doctor said she was fine because she could pass Alzheimer's test. She died in 2017 of swallowing issues.


My husband has FTD since 65 years old. He has 76 now and I'm your caregiver.

Erika Laine

My husband was diagnosed with FTD in July 2016. Now 24/7 care needed. He speaks almost nothing, doesn't read or write, has wheelchair, trouble swallowing. He does understand what is happening and it's heartbreaking when he says: "The disease is progressing, my soul is hurting". FTD eats him alive.

E Pegg

Husband has bvFTD, diagnosed at 55 in 2017. Extreme ocd, compulsive and restless behavior. Very rapid progression. Mine and our 3 children’s lives turned upside down

Terry Walter

My husband Steven at age 57 was the last of three brothers, a mother and an aunt to die from bvFTD / ALS. An entire family wiped out by FTD. He fought valiantly and participate in as much research possible hoping that his children or anyone not suffer.


I will tell you 100% it's not a fair disease at all. Next week we gear up for Alyssa’s wedding. It should be the time of his life. Our loved one has been dx with bvFTD at the young age of 44. We are praying that next week we will have a glimpse of our Tom and he can walk his daughter down the aisle


My mom, Robin passed away on July 27, 2019 from FTD. She was diagnosed in October of 2014 and began living in a memory care home in 2017. My family is devastated to have witnessed what this disease did to our precious mom. She is at peace now.


Via Rio Mogoro snc
My 54-year-old husband had the diagnosis of bvftd with parkinsonism 2 years ago. At least 10 years ago he had major problems with behavior and aggression. He has lost empathy and apathy. He had been treated for bipolar and then finally after investigations with MRI, PET, and Da


Cincinnati, United States

My mother, Melva, was diagnosed with bvFTD in August of 2017 at age 63. Her health is steadily declining with new daily challenges. Cherishing every day and embracing the new version of her.

Maryam Noroozian

I am a professor of neurology working in the field of Dementia at Tehran University of Medical Sciences for 15 years. Most of our FTD patients have been PPA or have a diagnosis of psychiatric disorder because of psychiatric features and personality change in FTDbv.