Amen sir. And God bless you & all. Im 40. I was diagnosed w mild cognitive dosorder 1.5 yr ago. It's a long is a long story, but I've had epilepsy since 6 months baby from a spider bite & high fever. The epilepsy got worse as I got older and as a kid, not much was known about that. I actually got kicked out of 3 Highschools bc of seizures. I know in 2015 I started having bad headaches and chest pains. My lungs were checked, my heart was, my brain was, my kidneys were, my liver was. & The hospital said "Wow, your so healthy". I'd been smoking since I was 13. But the lung doc said, "ud never even know it.' In 2016 things got real bad w my chest and head. So my x took me to hospital. They put me in a coma & told everyone it'd be 2 days at most but they put me in coma. My x told mom and family I had trigeminal neuralgia, septic shock and ARDS. K. I was in the coma for 7 days. In the 3rd day my x told my ma they had to pull the plug cause I had no chance. My fam came and they poke to my x begin him not to pull the plug. After I woke up the 7 day, they kept me for a week. When I left they said I'd need to get used to walkin again bc coma but my health was perfect. But, my seizures started actin up, I couldn't breath lying flat bc pain, i was throwin up or nausios constantly. There was so much. But the doctors kept tellin me I was healthy as a horse. My neuro changed my epilepsy med a few times but that was it. In 2019 rememberin names got hard. But my doc said it's from the seizures. I went into sepsis again and when I came out he said, "u need to xhange ur additude to life". Ur an awesome man sir bc my x became abusive and was also tellin people I was nuts. He & my doc said I needdd to be put in a mental hospital so I went to my brothers and was put in (I forget the name but it started w an m). There for a week, they sent me home w papers that my health was off but not crazy. There's more, but I'll go to in 2020 I went into a grand mall seizure & after it my x was throwing me around & then literally threw me out the door. I stayed w friends so I could be by my kids & a few months later, I went into Septic shock again. After that, I gave my life to Christ 🌊🙌and moved to sc w fam. I found new epilepsy doc and my old one wouldn't give him my records. Kept putting it off. He had me see a liver doc bc pains I have. I learned my liver was scared, had fatty tissue and was 21cm. That doc fought to get my records from my old one. My ma used to fix computers so she said she'd see if she could find them. SHE DID! & I learned that 2016 I hadc been diagnosed w a cyst on right kidney, a damaged liver, emphfsema, pulmonary edema, I had a heart attack before the coma, lots of slower in my brain, the septic shock trigeminal neuralgia and ARDS PLUS, I WAS ODed on toprimate the 3rd day in the coma. When we went back on it to print the rest, the records were gone. (What is good, is I took pics of them w my phone so, I have thade. I got my vns battery changed 1.5 yrs ago and then saw a neuro physc after bc it's done that way. That's when I was diagnoses w mild cognitive disorder due to, 2 brain surgiers, seizures my whole life in temporary lobe and meds I had been on. I've all records. For a few months now ive to where I get mad reali easy (which socks people bc I was never 1 to let anything bug me. Christ Chas reason for all) I feel horrible about gettin mad. So I keep in my room if I'm not at work or church. I also, forget names of people I've worked pt w for 2 years. I can't see in dark. I can't sleep at night even when I do,I wake up every hr. (Thank God for His word). I was seizering non stop for 2 hrs a few months ago & threw my guts up during them. I been have seizures weekly now. A few nights ago I chewed my meds instead of takin w wayer then spit them out cause taste. I can't walk wouy goin urine. There's so much more. But, I've givin it to God. Bc even though I thank God every day for my new docs, I don't trust docs at all! So, whetever I'm at w all this, I remind myself, God's got reason. I cant no one change His plans anyway. U couldn't pay me to c a doc again, for anything but my epilepsy & its bc bc of all I found & now have copys of from my past docs. I'm on this cause I'm trying to learn things mysrlf and take care of myself w God alone. Thank u for ur postings and I agree sir, w proof and copies, DOCTORS CANT BR TRUSTED! I had to change my name in full, my address isn't where I live, change all my emails, numbers all. But Gods got reason for everything and I'm livin proof to that. Plus - 2 Cor4::18 Fix ur eyes not on what's seen but what's unseen. What's seen is temporary what's unseen is Eternal! & Epf 3:20- LET GO & LET GOD🙌 God bless u w all my heart and thank u for ur info.
I have just watched all five videos, very moving, honest, candid and extremely helpful. Thank you so so much for making these videos. Its helped me understand so much better. It takes real guts to talk openly and honestly like this. I was chuckling at some of your stories (in the other videos) , and i have a real lump in a throat in this one. Thank you very much for doing this God bless, and thank you!
This was an awesome series to watch. I see this was made in 2015 so i'm sure your sweet Marcia is gone now. This disease is so scary. I'm 56 I can't imagine being told I have this awful disease. I hope a cure is near. So sad
Thank you so much for this series. My sweet loving baby passed on six years ago at age sixty. I was told it was Alzheimer's. But I think they were wrong because my hubby fit this to a t. This gentleman could have been speaking about my Myron. The only difference is I had NO support net work. I tried the Alzheimer's Alliance of Smith county here in Texas and they we unable to help me because we lived over the county line in Henderson county yet Henderson had NO support services at all. So I had to fly it solo and thought I would lose my mind. I got down to only sleeping twenty minutes a day and I've never relearned to sleep well. It the disease ran me into the ground but I was so busy taking care of and loving Myron I did not know this. But I would do it all over again for him because I loved him not to the Moon and back but past the Moon and beyond!
This was extremely helpful for me. My mother has FTD and this story resonated with similar experiences . I now have the help of hospice coming to our home.
now This IS Love .. at its most beautiful .. strong and true ... To have it , even a memory of it , is a Blessing. Keep Strong and Bless You All! Thanks for sharing
Thank you for this series. My mum has FTD and requires full care, which I’m providing at her house in rural England. It’s very isolating and difficult but I related to a lot of issues raised here and learnt some things I need to know with regards to what to expect and how to help differently. Thanks.
I know Huntington is not the same disease but there is alot of similarities such as weight falling off... rage or anger for no reason it seems and as the brain is being taken over by the disease there is burners turned on under an empty pan or look at something that needs to be put in icebox but it dont compute. As disease progresses it makes me sad and makes me upset to keep repeating or doublecking burners. Thanks for taking your time to share with us your own experiences.
@@PAULJOHNBAYFIELD , put my dad in a nursing home a few weeks ago. was hard to do, but he has progressed beyond my ability to care for him. slowly getting my life on track again..was really hoping to have him spend his last days in his own home. but that wasn't possible
I wish I had seen these videos when my mother was diagnosed. She had symptoms for four years before being diagnosed, and they were exactly what is being described in these videos. I had never heard of FTD. And really was trying to spend time with her, music was the best thing. She passed away one year after the diagnosis.
Thank you for sharing your wife's story and the struggles you are facing. I have just been told that I might have this disease; more evidence is pending. For me it is the losing the ability to teach after 30 years in the classroom and 5 years in administration as it is affecting my communication skills, and boy was I a talker and writer. Once again thanks for sharing.
Jond'Marie Stilwell-Elstob *How are you today? Are you hanging on and being diagnosed with something? I hope of all my heart that you are in perfect health and nothing is wrong, OR that is"Only" a depression or something other treatable disease you have.*💜
I have just watched all the videos with this lovely ,lovely gentleman i think his name was len or mayb ken he was so amazing wot a super chap.He spoke with such honesty plain & simple speak so you could understand easily what he was telling you .I am so pleased i came accross these videos l am lukin after both ov my elderly parents my father has Alzimers & Dementia mixed & as been diagnosed 3x yrs & my mum sounds very like she has this frontotemportal (FTD)she has gone down hill very rapid in this last year it is so difficult to see & i really do struggled as i am not at all well myself.I have many friends who r good with me & a grt doctor who supports me but i have learned a lot ftom this video & this wonderful mans honesty & frankness .I am goin to try & join a group to try & get some support.It is very true like he sayes Patience is no1 top ov the list but it is not easy as everything is frustrating.you need the patience of a saint & they do read ur body langage .It can be hard to smile when you feel like crying😪Thank you so much for doing these videos.Take care lots of love & prayer to yoy all X🙏🌈💕X
Thank you for your 5 series which I just watched. My husband (87) diagnosed with Lewey Body (?) but this sounds a lot like him...so is there a fine line between all these "so-called" dementia's? I have gone back many, many years and seen things that were "not right" that now give me answers. First real facing that something was NOT right was his inability to connect with traffic lights and his control of the automobile. Today I am at the onset of toilet problems and not knowing what it is for...will the water come out on the floor...and repeatedly...WHERE IS IT. Life does get challenging. Thanks for these series of 5 discussions, they were helpful.
Thanks for making these videos. My best friend has been suffering from Aphasia for 3 years and hasn’t gotten a diagnosis of the cause yet. She has an extremely hard time talking, writing and typing. She has quite a number of other symptoms I noticed during my recent visit with her. Her memory seems fine but parts of her personality seem totally missing. She also seems very disconnected from her emotions. She is going for in-depth diagnostic testing this week. I’m so afraid FTD will be the diagnosis. Her symptoms fit FTD much closer than Alzheimer’s. It’s such a brutal disease.
i believe only people who have any family with this disease knows how it feels, its really sad, i have my mother whits this disease since 3 years ago, we live in argentina and fortunately their doctors are very good , but still pass the disease is really terrible, God willing, sometime this disease is really investigated and other families will not have to go through this, or at least that our loved ones have a more dignified life they are able to give at this time. :..(
My hardest challenge is my husband has a trache, I have to clean the trache, suction, etc. He hasn't had an inner cannula in tonight because he keeps throwing it across the room. He will not let me suction or do anything to clear his airway without being aggressive, going to the bedroom, locking the door. Then I use a card to open the door. He was just in a nursing home. He punched the nurse so he can't return. Due to his trache, feeding tube, ventilator at night, and FTD behaviors his placement was in another state, located about 5 hours away. My problem is he is 24 hour care and family will not help at all and are in total denial that he isn't in his right mind. He is home now as of yesterday. I can't do 24/7. What I take away from the videos is redirect, patience.. which I feel are absolutely necessary, although it is hard. Safety comes first everyone wants him at home, but no one will help me. Our one year anniversary is in 8 days. The ALS and FTD is devastating. From listening his is progressing extremely fast daily and weekly, not years. We r at the point of the not knowing me all the time. Find support, find support is going to be my top priority. I tried to work when he was in the nursing home. I worked one day and couldn't make myself get out of the house. He has a daughter they like to throw up in my face...that's her dad..he's the only person she has..etc...well without help, I can't do it. I can't help they are blind. He takes off down the street and walks fast, thinks he can drive..I have to hide the keys, he gives his wallet to family so it's gone too and his phone. ?? Good grief!!!!!!
This was created 6 year's ago. Awareness, education and social realization for first responders, communities, medical personnel and caregivers will provide assistance and support for everyone.
Amen sir. And God bless you & all. Im 40. I was diagnosed w mild cognitive dosorder 1.5 yr ago. It's a long is a long story, but I've had epilepsy since 6 months baby from a spider bite & high fever. The epilepsy got worse as I got older and as a kid, not much was known about that. I actually got kicked out of 3 Highschools bc of seizures. I know in 2015 I started having bad headaches and chest pains. My lungs were checked, my heart was, my brain was, my kidneys were, my liver was. & The hospital said "Wow, your so healthy". I'd been smoking since I was 13. But the lung doc said, "ud never even know it.' In 2016 things got real bad w my chest and head. So my x took me to hospital. They put me in a coma & told everyone it'd be 2 days at most but they put me in coma. My x told mom and family I had trigeminal neuralgia, septic shock and ARDS. K. I was in the coma for 7 days. In the 3rd day my x told my ma they had to pull the plug cause I had no chance. My fam came and they poke to my x begin him not to pull the plug. After I woke up the 7 day, they kept me for a week. When I left they said I'd need to get used to walkin again bc coma but my health was perfect. But, my seizures started actin up, I couldn't breath lying flat bc pain, i was throwin up or nausios constantly. There was so much. But the doctors kept tellin me I was healthy as a horse. My neuro changed my epilepsy med a few times but that was it. In 2019 rememberin names got hard. But my doc said it's from the seizures. I went into sepsis again and when I came out he said, "u need to xhange ur additude to life".
Ur an awesome man sir bc my x became abusive and was also tellin people I was nuts. He & my doc said I needdd to be put in a mental hospital so I went to my brothers and was put in (I forget the name but it started w an m). There for a week, they sent me home w papers that my health was off but not crazy. There's more, but I'll go to in 2020 I went into a grand mall seizure & after it my x was throwing me around & then literally threw me out the door. I stayed w friends so I could be by my kids & a few months later, I went into Septic shock again. After that, I gave my life to Christ 🌊🙌and moved to sc w fam. I found new epilepsy doc and my old one wouldn't give him my records. Kept putting it off. He had me see a liver doc bc pains I have. I learned my liver was scared, had fatty tissue and was 21cm. That doc fought to get my records from my old one. My ma used to fix computers so she said she'd see if she could find them. SHE DID! & I learned that 2016 I hadc been diagnosed w a cyst on right kidney, a damaged liver, emphfsema, pulmonary edema, I had a heart attack before the coma, lots of slower in my brain, the septic shock trigeminal neuralgia and ARDS PLUS, I WAS ODed on toprimate the 3rd day in the coma. When we went back on it to print the rest, the records were gone. (What is good, is I took pics of them w my phone so, I have thade.
I got my vns battery changed 1.5 yrs ago and then saw a neuro physc after bc it's done that way. That's when I was diagnoses w mild cognitive disorder due to, 2 brain surgiers, seizures my whole life in temporary lobe and meds I had been on. I've all records. For a few months now ive to where I get mad reali easy (which socks people bc I was never 1 to let anything bug me. Christ Chas reason for all) I feel horrible about gettin mad. So I keep in my room if I'm not at work or church. I also, forget names of people I've worked pt w for 2 years. I can't see in dark. I can't sleep at night even when I do,I wake up every hr. (Thank God for His word). I was seizering non stop for 2 hrs a few months ago & threw my guts up during them. I been have seizures weekly now. A few nights ago I chewed my meds instead of takin w wayer then spit them out cause taste. I can't walk wouy goin urine. There's so much more. But, I've givin it to God. Bc even though I thank God every day for my new docs, I don't trust docs at all! So, whetever I'm at w all this, I remind myself, God's got reason. I cant no one change His plans anyway.
U couldn't pay me to c a doc again, for anything but my epilepsy & its bc bc of all I found & now have copys of from my past docs. I'm on this cause I'm trying to learn things mysrlf and take care of myself w God alone. Thank u for ur postings and I agree sir, w proof and copies, DOCTORS CANT BR TRUSTED! I had to change my name in full, my address isn't where I live, change all my emails, numbers all. But Gods got reason for everything and I'm livin proof to that. Plus - 2 Cor4::18 Fix ur eyes not on what's seen but what's unseen. What's seen is temporary what's unseen is Eternal! & Epf 3:20- LET GO & LET GOD🙌
God bless u w all my heart and thank u for ur info.
What a loving, kind, and gentle man you are. God bless you, Len Stickler.
*Talk about loving someone unconditionally.*
I have just watched all five videos, very moving, honest, candid and extremely helpful. Thank you so so much for making these videos. Its helped me understand so much better. It takes real guts to talk openly and honestly like this. I was chuckling at some of your stories (in the other videos) , and i have a real lump in a throat in this one. Thank you very much for doing this God bless, and thank you!
God Bless Len and the caregivers like him. What a beautiful man.
This was an awesome series to watch. I see this was made in 2015 so i'm sure your sweet Marcia is gone now.
This disease is so scary. I'm 56 I can't imagine being told I have this awful disease. I hope a cure is near. So sad
Thank you so much for sharing your and Marcia’s story. It’s been years since you posted this but it lives on in TH-cam to help others.
Thank you so much for this series. My sweet loving baby passed on six years ago at age sixty. I was told it was Alzheimer's. But I think they were wrong because my hubby fit this to a t. This gentleman could have been speaking about my Myron. The only difference is I had NO support net work. I tried the Alzheimer's Alliance of Smith county here in Texas and they we unable to help me because we lived over the county line in Henderson county yet Henderson had NO support services at all. So I had to fly it solo and thought I would lose my mind. I got down to only sleeping twenty minutes a day and I've never relearned to sleep well. It the disease ran me into the ground but I was so busy taking care of and loving Myron I did not know this. But I would do it all over again for him because I loved him not to the Moon and back but past the Moon and beyond!
This was extremely helpful for me. My mother has FTD and this story resonated with similar experiences .
I now have the help of hospice coming to our home.
What a wonderful man! I am an Rn for over 30 years and when my partner got this I had no idea. Thank you
Thank you Len for being so open and sharing this valuable information to families that have to face this disease. Bless you x
God bless you, Sir. My mother was just diagnosed with FTD. Now I understand better what has happened and what is coming. Bless you.
Thank you…we are at the beginning of this journey. I am desperate for support, but am learning to adapt.
Thank you for sharing your experience with your wife about ftd My dad who is in his 80s was just recently diagnosed.
This made me cry. What a wonderful man and beautiful relationship.
now This IS Love .. at its most beautiful .. strong and true ...
To have it , even a memory of it , is a Blessing.
Keep Strong and Bless You All!
Thanks for sharing
Thank you for this series. My mum has FTD and requires full care, which I’m providing at her house in rural England. It’s very isolating and difficult but I related to a lot of issues raised here and learnt some things I need to know with regards to what to expect and how to help differently.
Thanks.
My heart goes out 2 u both god bless x
I know Huntington is not the same disease but there is alot of similarities such as weight falling off... rage or anger for no reason it seems and as the brain is being taken over by the disease there is burners turned on under an empty pan or look at something that needs to be put in icebox but it dont compute. As disease progresses it makes me sad and
makes me upset to keep repeating or doublecking burners.
Thanks for taking your time to share with us your own experiences.
I don't feel alone in this when I study his videos. He is a rock.
thankyou, iv my dads primary caretaker, im at the end of this journey with him..im so tired... hope I can keep up the positive energy
MrChuckindenver Hope you’re ok. It’s so exhausting isn’t it.
@@PAULJOHNBAYFIELD , put my dad in a nursing home a few weeks ago. was hard to do, but he has progressed beyond my ability to care for him. slowly getting my life on track again..was really hoping to have him spend his last days in his own home. but that wasn't possible
Professional managed care costs have got to come down. These diseases are hard enough without the burden of how to pay for them.
Thank you. I am in a similar situation. My wife diagnosed at age 58.
You have given me peace. Your story is very touching with this horrible disease.
I wish I had seen these videos when my mother was diagnosed. She had symptoms for four years before being diagnosed, and they were exactly what is being described in these videos. I had never heard of FTD. And really was trying to spend time with her, music was the best thing. She passed away one year after the diagnosis.
Thank you for sharing your wife's story and the struggles you are facing. I have just been told that I might have this disease; more evidence is pending. For me it is the losing the ability to teach after 30 years in the classroom and 5 years in administration as it is affecting my communication skills, and boy was I a talker and writer. Once again thanks for sharing.
Jond'Marie Stilwell-Elstob *How are you today? Are you hanging on and being diagnosed with something? I hope of all my heart that you are in perfect health and nothing is wrong, OR that is"Only" a depression or something other treatable disease you have.*💜
7.756.935 God bless you. May God protect you and keep you strong and a cure be found soon Amen. God Bless you
Great series! Thank you 🙏
How incredible. We need to do better.
Thanks Len. My husband has FTD, got the dx of MCI 9/2016 and then the FTD dx 10/17. He's 63 and I have been seeing problems since 2013.
Thank you for this open and honest sharing of your experience sir. All my best❤
I have just watched all the videos with this lovely ,lovely gentleman i think his name was len or mayb ken he was so amazing wot a super chap.He spoke with such honesty plain & simple speak so you could understand easily what he was telling you .I am so pleased i came accross these videos l am lukin after both ov my elderly parents my father has Alzimers & Dementia mixed & as been diagnosed 3x yrs & my mum sounds very like she has this frontotemportal (FTD)she has gone down hill very rapid in this last year it is so difficult to see & i really do struggled as i am not at all well myself.I have many friends who r good with me & a grt doctor who supports me but i have learned a lot ftom this video & this wonderful mans honesty & frankness .I am goin to try & join a group to try & get some support.It is very true like he sayes Patience is no1 top ov the list but it is not easy as everything is frustrating.you need the patience of a saint & they do read ur body langage .It can be hard to smile when you feel like crying😪Thank you so much for doing these videos.Take care lots of love & prayer to yoy all X🙏🌈💕X
Thanks for sharing God bless 🙏 ❤
You are a great man.
Thnks for sharing And blessings
thank you very much. It was very helpful.
Thank you for your 5 series which I just watched. My husband (87) diagnosed with Lewey Body (?) but this sounds a lot like him...so is there a fine line between all these "so-called" dementia's? I have gone back many, many years and seen things that were "not right" that now give me answers. First real facing that something was NOT right was his inability to connect with traffic lights and his control of the automobile. Today I am at the onset of toilet problems and not knowing what it is for...will the water come out on the floor...and repeatedly...WHERE IS IT. Life does get challenging. Thanks for these series of 5 discussions, they were helpful.
Thanks for making these videos. My best friend has been suffering from Aphasia for 3 years and hasn’t gotten a diagnosis of the cause yet. She has an extremely hard time talking, writing and typing. She has quite a number of other symptoms I noticed during my recent visit with her. Her memory seems fine but parts of her personality seem totally missing. She also seems very disconnected from her emotions. She is going for in-depth diagnostic testing this week. I’m so afraid FTD will be the diagnosis. Her symptoms fit FTD much closer than Alzheimer’s. It’s such a brutal disease.
Really good advice, keep up the loving positive energy 🙏❤️
i believe only people who have any family with this disease knows how it feels, its really sad, i have my mother whits this disease since 3 years ago, we live in argentina and fortunately their doctors are very good , but still pass the disease is really terrible, God willing, sometime this disease is really investigated and other families will not have to go through this, or at least that our loved ones have a more dignified life they are able to give at this time. :..(
My hardest challenge is my husband has a trache, I have to clean the trache, suction, etc. He hasn't had an inner cannula in tonight because he keeps throwing it across the room. He will not let me suction or do anything to clear his airway without being aggressive, going to the bedroom, locking the door. Then I use a card to open the door. He was just in a nursing home. He punched the nurse so he can't return. Due to his trache, feeding tube, ventilator at night, and FTD behaviors his placement was in another state, located about 5 hours away. My problem is he is 24 hour care and family will not help at all and are in total denial that he isn't in his right mind. He is home now as of yesterday. I can't do 24/7. What I take away from the videos is redirect, patience.. which I feel are absolutely necessary, although it is hard. Safety comes first everyone wants him at home, but no one will help me. Our one year anniversary is in 8 days. The ALS and FTD is devastating. From listening his is progressing extremely fast daily and weekly, not years. We r at the point of the not knowing me all the time. Find support, find support is going to be my top priority. I tried to work when he was in the nursing home. I worked one day and couldn't make myself get out of the house. He has a daughter they like to throw up in my face...that's her dad..he's the only person she has..etc...well without help, I can't do it. I can't help they are blind. He takes off down the street and walks fast, thinks he can drive..I have to hide the keys, he gives his wallet to family so it's gone too and his phone. ?? Good grief!!!!!!
How are you doing today?
This was created 6 year's ago. Awareness, education and social realization for first responders, communities, medical personnel and caregivers will provide assistance and support for everyone.
my bestfriend was diagnosed at 28
I'm 30 and think I may have this. It's not easy....how is your friend doing?
Help me x omg x
We are here to help. Please feel free to reach out: Alzheimer's Support Network help@support.network / (239) 262-8388 / www.support.network
I posted this under my brothers name but I am Maria Beers Mrs Myron Beers jr
How do you stop a MAN made infection of the 🧠.