Our FTD story ~ my husband was diagnosed in 2000. He died in 2010. After diagnosis, we found that when he took his meds there were some good years and some great family memories. Dr Miller and other doctors helped us thru these difficult times. With the help of family and caregivers, he stayed at home until the last 10 months. He had a peaceful passing into heaven. Many heard me say that often when we ask God to take the storm away, HE says I am going to teach you to dance in the rain.
My mom was recently diagnosed with Frontal Temporal Dementia. I am her only child and primary caregiver. My mom is also going through a traumatic divorce. She has been staying with with my son and I for the two months. We had to moved in a larger place to accommodate my mom's needs. I had no intentions in moving with this being my son's Senior Year of High School. My mom attends a Senior Program during the day while I work. I have been looking for support groups in my area of Georgia. My prayer is for God to continue to give us caregivers strength to support our love one's. God bless
My husband has been diagnosed with BvFTD w/dementia. This has come after two years of probation for touching a girl on her chest after she touch him. I cried watching this video but it all made sense. After years of living with him and now finally finding what is going on has helped. When it rains it pours but there is always a silver lining on the horizon. All I can do is educate myself and my family. Pray and pray again. If Patience is a virtue....I will become Virtuous one day!
Next week will be one year since my precious mother died from FTD PPA. Hers was very progressive and she passed almost one year from the day she was diagnosed. I was her 24hr caregiver the last 3 months of her life. It will always be the most cherished and devastatingly brutal three months of our lives. Our mother was our life, our touch stone and our compass. Cheryl Hamby was the most beautiful, wickedly funny and angelic woman to ever walk this dirty earth. She died from a disease we had never heard of. Now I know all too well. My sisters and I are still completely enveloped in unimaginable grief for our beautiful mother. I'm not sure how to forge a life without her. I'm still so incredibly angry that a woman who had literally never done anything bad in her entire life, had to suffer so cruelly. My love to all of you carry the weight of loss and grief
Ms Holli, I am in the position you were in. I just lost my mother a few days before Christmas 2021. Your words happen to be the only words that I wasn't able to find any language for. Everything you shared about your mother is incredibly the same love, life, and circumstances I faced the last three yrs I devoted and dedicated to mine. I'm not able to process yet the manner of the way I lost her, it was not peaceful, and don't think as you said, not sure how to forge a life without her.
@@sarahchandler695 I am so incredibly sorry for your loss. I will hold you in my heart. Grief will come in phases, and will hit you at times with no warning. Just know that you were loved by her and that you loved her to very end.❤
This is so weird- This is exactly what my husband said when we got his FTD diagnosis. "It is what it is". I was surprised at how little it bothered him, but now I see how common that is and how it is just part of the condition. Long road ahead. I'll be joining AFTD.
Several years ago I had changes in my behavior like those in the film. I did not understand what was happening to me. I tried for a long time to find out what was wrong but was told by my doctor that the memory problems were just stress and the hallucinations were floaters. An MRI showed a massive toumor that had replaced most of my frontal lobes. It was removed but I still have symptoms. I am writeing an E-book to help others cope. A little bit of courage goes a long way when you are dying.
Extending love everyone's way. Viewed this for a class, but my heart will always be thinking and supporting each and every individual going through any sort of brain illness.
This video is very good, I can relate to these families because my husband was diagnosed in 2004 after five years of numerous neurologists, psychologists and psychiatrists, mid-life crisis they all said, well, we finally had a name :FTD which was a relief and then came the frustration.The epiphany moment for me was a book called "Embracing Dementia (A Call to Love)" by Ellen Marie Edmonds.My husband has the bvftd-behavior and going out with him is very stressful, but the good Lord guide us.
Thankyou for this honest and moving video. I am crying watching it and hearing your stories. My father was diagnosed with it recently but I think he had it while I was growing up and now I understand why he was so angry, cold and odd with my mum and I.
God Bless your two families! I was just told 10 years ago i was diagnosed with ftd but doctors never told us . Just said i was depressed. Its got worse the last 6 months and we went to a hospital that does research and they said right away what it was. We fought so many years saying i cant drive and get lost and have trouble with my words. Because doctors never saw the dad days... they said i was just depressed and put me on mefs that flipped me out. Its been so hard but even learning what it is was the hardest. Thank each of you for sharing
Deanna, thank you for sharing your story with us. We're deeply sorry to hear about the struggles you’ve faced, both with the diagnosis and the years of misunderstanding from doctors. It must have been incredibly frustrating and challenging. Please know that you’re not alone in this journey. We are here to offer support and guidance. If you have any questions or need someone to talk to, our HelpLine is always available at info@theaftd.org. Sending you strength and compassion.
I watched this last April, 2013. I watched again today (August 2014.) I cried both times. Who needs a tsunami, when FTD is a vortex following ginormous waves of confusion on a sea of incredulity. Pretty sure FTD stands for Funky Trip for Daddy Douglas. Tsunami: the truck that struck and paralyzed me. The vortex: the persistent evacuation of my head. But in this loniless, Christ Jesus is my hope and salvation.
so sorry your going through this. My Mom was diagnosed for only 2 1/2 years and passed May 4, 2013. My Dad was diagnosed December 2013. On December 31,2013 he was placed on hospice. On May 1, 2014 he passed here at my home. I have met people who loved ones had it for 5-7 years. My parents didn't have that long. On one hand I am glad they didn't have it long before they passed due to their personalities changed dramatically and things that were done. Especially damage emotionally within the family. On the other hand I MISS them so much every day. I did not have time to grieve for my Mom since 6 months after her passing I had to deal with my dad. And to do hospice for both my parents and deal with their deaths within a year of each other has been the hardest thing. I at times feel I have a broken soul and pray everyday for God to help me fix it. I came from a very large close family. Now my family has been torn apart. But some can handle it and some are not able to deal with it. I am thankful I was always remember it was not their fault and they had a neurological disorder that was killing them. On the line of their death certificated where it says immediate cause of death ,, both of theirs say "frontotemporal dementia". I pray for God to give you strength..
My father died in 2010 from FTD. He is in heaven, this helps me. God is good and the only source for joy and peace especially noticed during the difficult times and circumstances. I pray for you. May you find true peace and the assurance of quiet joy.
It IS, what it is! Powerful video - So good to know er are not alone! It brings forward the memories of watching my father leaving, my mother care giving and all of us traveling the long cycle of grief...it is what it is!
One of the women women in this video was a professor of mine many years ago, but I only found out today about this issue and how it effected her and her family's life. Hopefully progress has been made on this in the years since the video was first produced.
I suspect my father was in the early stages of this disease. He got very emotionally withdrawn and on occasion showed inappropriate and out of character behaviour. Before any FTD diagnosis could be made he got cancer as a result of which he died a few months later. I still wonder if that was a blessing in disguise? Now my mom has vascular dementia and I see what a horrible disease it is.
I need a friend to talk to about this, my husband is not himself and it is getting worse, he won't see a Dr. Says nothing is wrong but hasn't said my name in months, he doesn't show emotions even when I fell out of the attic
AFTD’s HelpLine is available for information and resources related to FTD. Our staff responds to inquiries Monday through Friday during regular business. 1-866-507-7222 or info@theaftd.org
My step dad had this he was a mind dr..cant spell the name..but he said some people just have this and maybe one day they will find a cure.But this has been going on for decades my grandpa had it because im the step son I will never get the gene..and the gene is the problem well to get the FTD..THANKS
If I could recommend one course of action for all these families, and anyone struggling with chronic and or degenerative illness, it would be to see a toxicologist and get a full spectrum analysis of hair, blood, urine and any other body part they can test. Doctors are failing to help these patients as they are not looking in the right places.
MANY OF THESE ARE GENETIC AND YOUR SUGGESTION IS BOTH USELESS AND INSULTING AS YOU ARE SAYING BETWEEN THE LINES THAT WE ARE RESPONSIBLE FOR OUR DISEASE EVEN IF WE CAN'T CHOOSE OUR PARENTS!!!
why do families film there loved ones with this illness its sick what's wrong with u people its wrong I know it's sad to see you're loved one's that sick .
absolutely...I wish I had of known years ago what my husband was diagnosed with this July 2016...It would have saved us tons of $ that went on lawyers the 3 times I filed for divorce cause I had no clue what has happening to my family & husband...We were told since 2012 he had ALZ...but never had any symptoms of memory loss ...just bizarre acts and cruel treatment from him.....I have shared this on my FB and have only gotten support in abundance...NEVER any opposition...The word needs to GET OUT about this illness so research and awareness can follow...Many people are misdiagnosed with this as we were...We have lost precious time we cannot get back...I thank God for the people in this video...ALL of them ! They were brave enough to share personal data with any & all that concerned..YOU ARE ALL HEROS.
Our FTD story ~ my husband was diagnosed in 2000. He died in 2010.
After diagnosis, we found that when he took his meds there were some good years and some great family memories. Dr Miller and other doctors helped us thru these difficult times. With the help of family and caregivers, he stayed at home until the last 10 months. He had a peaceful passing into heaven. Many heard me say that often when we ask God to take the storm away, HE says I am going to teach you to dance in the rain.
My mom was recently diagnosed with Frontal Temporal Dementia. I am her only child and primary caregiver. My mom is also going through a traumatic divorce. She has been staying with with my son and I for the two months. We had to moved in a larger place to accommodate my mom's needs. I had no intentions in moving with this being my son's Senior Year of High School. My mom attends a Senior Program during the day while I work. I have been looking for support groups in my area of Georgia. My prayer is for God to continue to give us caregivers strength to support our love one's.
God bless
When the Son said he wanted to go to see his mom on graduation day and take a picture with her , I lost it 😭😭😭
Inge Humphries yes ditto. So sad.
My husband has been diagnosed with BvFTD w/dementia. This has come after two years of probation for touching a girl on her chest after she touch him. I cried watching this video but it all made sense. After years of living with him and now finally finding what is going on has helped. When it rains it pours but there is always a silver lining on the horizon. All I can do is educate myself and my family. Pray and pray again. If Patience is a virtue....I will become Virtuous one day!
Next week will be one year since my precious mother died from FTD PPA. Hers was very progressive and she passed almost one year from the day she was diagnosed. I was her 24hr caregiver the last 3 months of her life. It will always be the most cherished and devastatingly brutal three months of our lives. Our mother was our life, our touch stone and our compass. Cheryl Hamby was the most beautiful, wickedly funny and angelic woman to ever walk this dirty earth. She died from a disease we had never heard of. Now I know all too well. My sisters and I are still completely enveloped in unimaginable grief for our beautiful mother. I'm not sure how to forge a life without her. I'm still so incredibly angry that a woman who had literally never done anything bad in her entire life, had to suffer so cruelly. My love to all of you carry the weight of loss and grief
Ms Holli, I am in the position you were in. I just lost my mother a few days before Christmas 2021. Your words happen to be the only words that I wasn't able to find any language for. Everything you shared about your mother is incredibly the same love, life, and circumstances I faced the last three yrs I devoted and dedicated to mine. I'm not able to process yet the manner of the way I lost her, it was not peaceful, and don't think as you said, not sure how to forge a life without her.
@@sarahchandler695 I am so incredibly sorry for your loss. I will hold you in my heart. Grief will come in phases, and will hit you at times with no warning. Just know that you were loved by her and that you loved her to very end.❤
This is so weird- This is exactly what my husband said when we got his FTD diagnosis. "It is what it is". I was surprised at how little it bothered him, but now I see how common that is and how it is just part of the condition. Long road ahead. I'll be joining AFTD.
Welcome to our community dedicated to ending FTD!
Several years ago I had changes in my behavior like those in the film. I did not understand what was happening to me. I tried for a long time to find out what was wrong but was told by my doctor that the memory problems were just stress and the hallucinations were floaters. An MRI showed a massive toumor that had replaced most of my frontal lobes. It was removed but I still have symptoms. I am writeing an E-book to help others cope. A little bit of courage goes a long way when you are dying.
So sad. It’s so painful to see that this is happening to people and they have no control. The human body is so fragile. It makes me so sad.
Extending love everyone's way. Viewed this for a class, but my heart will always be thinking and supporting each and every individual going through any sort of brain illness.
I can't stop sobbing.
My uncle was diagnosed with FTD (Picks) five years ago. He was only 50 years old. It's heartwrenching to see him slowly fading away.
This video is very good, I can relate to these families because my husband was diagnosed in 2004 after five years of numerous neurologists, psychologists and psychiatrists, mid-life crisis they all said, well, we finally had a name :FTD which was a relief and then came the frustration.The epiphany moment for me was a book called "Embracing Dementia (A Call to Love)" by Ellen Marie Edmonds.My husband has the bvftd-behavior and going out with him is very stressful, but the good Lord guide us.
watching this for a class. im crying with all of you, I'm with all of you.
Bloody heartbreaking. Tears welling up.
Thankyou for this honest and moving video. I am crying watching it and hearing your stories. My father was diagnosed with it recently but I think he had it while I was growing up and now I understand why he was so angry, cold and odd with my mum and I.
God Bless your two families! I was just told 10 years ago i was diagnosed with ftd but doctors never told us . Just said i was depressed. Its got worse the last 6 months and we went to a hospital that does research and they said right away what it was. We fought so many years saying i cant drive and get lost and have trouble with my words. Because doctors never saw the dad days... they said i was just depressed and put me on mefs that flipped me out. Its been so hard but even learning what it is was the hardest. Thank each of you for sharing
Deanna, thank you for sharing your story with us. We're deeply sorry to hear about the struggles you’ve faced, both with the diagnosis and the years of misunderstanding from doctors. It must have been incredibly frustrating and challenging.
Please know that you’re not alone in this journey. We are here to offer support and guidance. If you have any questions or need someone to talk to, our HelpLine is always available at info@theaftd.org.
Sending you strength and compassion.
Thank you for this documentary it is proof that anyone can get this disease I wish the best for all of these wonderful family’s 💕x
This is increasingly important with the increase in Synthetic living. Thank you all for sharing 💖
Synthetic living? Please explain that…thank you..
I watched this last April, 2013. I watched again today (August 2014.) I cried both times.
Who needs a tsunami, when FTD is a vortex following ginormous waves of confusion on a sea of incredulity.
Pretty sure FTD stands for
Funky Trip for Daddy Douglas.
Tsunami: the truck that struck and paralyzed me.
The vortex: the persistent evacuation of my head.
But in this loniless, Christ Jesus is my hope and salvation.
so sorry your going through this. My Mom was diagnosed for only 2 1/2 years and passed May 4, 2013. My Dad was diagnosed December 2013. On December 31,2013 he was placed on hospice. On May 1, 2014 he passed here at my home. I have met people who loved ones had it for 5-7 years. My parents didn't have that long. On one hand I am glad they didn't have it long before they passed due to their personalities changed dramatically and things that were done. Especially damage emotionally within the family. On the other hand I MISS them so much every day. I did not have time to grieve for my Mom since 6 months after her passing I had to deal with my dad. And to do hospice for both my parents and deal with their deaths within a year of each other has been the hardest thing. I at times feel I have a broken soul and pray everyday for God to help me fix it. I came from a very large close family. Now my family has been torn apart. But some can handle it and some are not able to deal with it. I am thankful I was always remember it was not their fault and they had a neurological disorder that was killing them. On the line of their death certificated where it says immediate cause of death ,, both of theirs say "frontotemporal dementia". I pray for God to give you strength..
My father died in 2010 from FTD. He is in heaven, this helps me. God is good and the only source for joy and peace especially noticed during the difficult times and circumstances. I pray for you. May you find true peace and the assurance of quiet joy.
Yes...My husband has it and I could not go on this journey without my Savior & Lord Jesus...Best wishes for you Douglas...
Prayers for you...What a heavy load to bear...But looking upward to Christ...keep your eyes upon Jesus!
It IS, what it is!
Powerful video - So good to know er are not alone!
It brings forward the memories of watching my father leaving, my mother care giving and all of us traveling the long cycle of grief...it is what it is!
I sobbed and sobbed here my sweet man has recently been diagnosed with FTD.
I remember the first time I saw this video. We used it in a staff training at a memory care unit. I was sobbing by the time it was over.
Memory care*
A. Brown *You are not alone in sobbing.*😭
Wow! Thanks for sharing.
One of the women women in this video was a professor of mine many years ago, but I only found out today about this issue and how it effected her and her family's life. Hopefully progress has been made on this in the years since the video was first produced.
I suspect my father was in the early stages of this disease. He got very emotionally withdrawn and on occasion showed inappropriate and out of character behaviour. Before any FTD diagnosis could be made he got cancer as a result of which he died a few months later. I still wonder if that was a blessing in disguise? Now my mom has vascular dementia and I see what a horrible disease it is.
I need a friend to talk to about this, my husband is not himself and it is getting worse, he won't see a Dr. Says nothing is wrong but hasn't said my name in months, he doesn't show emotions even when I fell out of the attic
AFTD’s HelpLine is available for information and resources related to FTD. Our staff responds to inquiries Monday through Friday during regular business. 1-866-507-7222 or info@theaftd.org
To me this was hard to watch. My husband just got diagnosed and now lives in a care home. He is 65. Although he is alive, the man I married is gone.
Wow😢
I think I have this diasease. I do not feel my feelings... But I know somethings not ok.. But my mri's was negativ..
Norah
I hope it wasn’t Norah 💔
I initially thought my husband's behavior was passive aggressive and cruel. I didn't know til after he passed that he had FTD.
My step dad had this he was a mind dr..cant spell the name..but he said some people just have this and maybe one day they will find a cure.But this has been going on for decades my grandpa had it because im the step son I will never get the gene..and the gene is the problem well to get the FTD..THANKS
If I could recommend one course of action for all these families,
and anyone struggling with chronic and or degenerative illness,
it would be to see a toxicologist and get a full spectrum analysis
of hair, blood, urine and any other body part they can test. Doctors are
failing to help these patients as they are not looking in the right places.
MANY OF THESE ARE GENETIC AND YOUR SUGGESTION IS BOTH USELESS AND INSULTING AS YOU ARE SAYING BETWEEN THE LINES THAT WE ARE RESPONSIBLE FOR OUR DISEASE EVEN IF WE CAN'T CHOOSE OUR PARENTS!!!
why do families film there loved ones with this illness its sick what's wrong with u people its wrong I know it's sad to see you're loved one's that sick .
In part, so that some of us won't get divorced, put off testing until they cannot say good-bye, or feel SO ALONE. Why is it YOUR business?
absolutely...I wish I had of known years ago what my husband was diagnosed with this July 2016...It would have saved us tons of $ that went on lawyers the 3 times I filed for divorce cause I had no clue what has happening to my family & husband...We were told since 2012 he had ALZ...but never had any symptoms of memory loss ...just bizarre acts and cruel treatment from him.....I have shared this on my FB and have only gotten support in abundance...NEVER any opposition...The word needs to GET OUT about this illness so research and awareness can follow...Many people are misdiagnosed with this as we were...We have lost precious time we cannot get back...I thank God for the people in this video...ALL of them ! They were brave enough to share personal data with any & all that concerned..YOU ARE ALL HEROS.
Melanie Blake your*