Emma you are very brave and I want to say thank you. I'm a care partner spouse to my husband with one of the FTD movement disorders. You are doing a great thing. We are nearing the end of our journey but it's been worth it to stick around to the end. Much love
I like that you call yourself “care partner”. My mom had Alzheimer’s disease. I learned to ask for help when I felt overwhelmed. It worked for our family.
My mother had FTD. Horrible disease. Thanks to you, I have gotten connected to research to see if it’s genetic. She started out with progressive aphasia (word finding problems), then it started affecting her ADLs, balancing her checkbook, paying bills, etc…thank you for bringing awareness to this disease. I am a Speech Language Pathologist and it killed me that I could do so little to prevent the progression of the disease. 💔😭
So brave of Emma to go to New York and speak letting the world know about FTD, No one really seems to understand what this is. My husband was officially diagnosed over 5 years ago with progressive aphasia and now it's transitioned into FTD. I am still learning daily, it's not like any other form of dementia, and I have no idea if he realizes the changes in himself. He was a brilliant musician, an avid snow skier, was on bike racing teams, went to the gym daily, and was so strong. Today he has aged 20 years in the last year, so many changes. We no longer can travel as he is housebound these days, and I am the sole care partner. I have to say I never cry, but listening to Emma today, brought tears to my eyes as I so understand what she is experiencing. My heart is with her and her family.
So touched my heart how devoted Emma is and how she has moved beyond the paralysis of the pain and is now such a passionate advocate. How this whole family has united together for the greater good and most importantly for the love of Bruce. Love is a super human resource ❤God Bless them all❤
You did such a wonderful job! You are such an authentic wise caring and articulate person and it all showed this morning! I'm sure your girls are very proud of you! Great job!
Ive worked with mental health clients for 25 years and I was really shocked and disappointed that we got no benefit of the antipsychotic family of meds. Usually if you had mood disorder or schizophrenia these meds could clear up some or all symptoms with maybe periodic episodes. But as the population I've known for years gets older they are having both mental illness and dementia and those meds don't work on dementia. They are wrong to say he doesn't have dementia or alzheimers these illnesses have a family or spectrum that they come from. Parkinsons' or ALS are related. This diagnosis that he has is within those families they just have eliminated the other categories and have a specific name for this but its dementia and its one of the worst when your body and executive functions are gone. You can end up "locked in" from this frontotemporal dementia or from Parkinson's or from ALS. This is the scariest class of conditions because you can't form sentences but even worse you can't tell us what you need and eventually you can't move. Experimental treatments are all you got. Sonic treatment can break up the plaques in the brain but its rarely available and in its infancy. I kenow one lady who had fluid removed from her brain as a treatment and it worked the pressure released helped her brain heal but it only lasted months. We just don't have the typical tools for this.May God bless you and may you get enough workers for your family that you don't remain stuck in the house forever. One guy I know would take his wife to live Grateful Dead music and she would dance rt up til she died. It was his mental health care going to music but Bruce may or may not like it. Another lady I work with gets panic attacks by loud sounds even music or eating in restraints she can't filter all that stimulation.
He's 24 years her senior as well. I don't think that many people who marry someone that much older really thinks about that. I know it definitely increases with age. Bruce worked hard for years ,but with his job ,I'm hoping directors take interest & consideration the blows / concussions etc ,as to how fragile the humans brains really is. I've heard he had injuries on the die hard movies. Bruce is a great guy.
My bro wanted a bite from an apple left on his bed by his wife..he couldn’t grab apple w/his hand, but bowed his head to apple on bed to bite it. No language. Just cried like a baby. His wife abandoned him. He died in a few months. That kind of dementia is hell.
Sending all my love to Emma. God bless you for teaching the world about FTD. Hugs, Ruthie
Emma you are very brave and I want to say thank you. I'm a care partner spouse to my husband with one of the FTD movement disorders. You are doing a great thing. We are nearing the end of our journey but it's been worth it to stick around to the end. Much love
I like that you call yourself “care partner”. My mom had Alzheimer’s disease. I learned to ask for help when I felt overwhelmed. It worked for our family.
Emma, you are such a beautiful person inside and out. Thank you for sharing your heart with us and bringing awareness to FTD ❤
My mother had FTD. Horrible disease. Thanks to you, I have gotten connected to research to see if it’s genetic. She started out with progressive aphasia (word finding problems), then it started affecting her ADLs, balancing her checkbook, paying bills, etc…thank you for bringing awareness to this disease. I am a Speech Language Pathologist and it killed me that I could do so little to prevent the progression of the disease. 💔😭
So brave of Emma to go to New York and speak letting the world know about FTD, No one really seems to understand what this is. My husband was officially diagnosed over 5 years ago with progressive aphasia and now it's transitioned into FTD. I am still learning daily, it's not like any other form of dementia, and I have no idea if he realizes the changes in himself. He was a brilliant musician, an avid snow skier, was on bike racing teams, went to the gym daily, and was so strong. Today he has aged 20 years in the last year, so many changes. We no longer can travel as he is housebound these days, and I am the sole care partner. I have to say I never cry, but listening to Emma today, brought tears to my eyes as I so understand what she is experiencing. My heart is with her and her family.
She's really beautiful, and empathetic.
So touched my heart how devoted Emma is and how she has moved beyond the paralysis of the pain and is now such a passionate advocate. How this whole family has united together for the greater good and most importantly for the love of Bruce. Love is a super human resource ❤God Bless them all❤
We are dealing with PSP. Neuro degenerative conditions are horrible diseases. God bless you and your family.
Emma you are so brave, you are ! and a wonderful voice for FTD! THANK YOU ! God bless you on this journey to raise awareness!
You did such a wonderful job! You are such an authentic wise caring and articulate person and it all showed this morning! I'm sure your girls are very proud of you! Great job!
Ive worked with mental health clients for 25 years and I was really shocked and disappointed that we got no benefit of the antipsychotic family of meds. Usually if you had mood disorder or schizophrenia these meds could clear up some or all symptoms with maybe periodic episodes. But as the population I've known for years gets older they are having both mental illness and dementia and those meds don't work on dementia. They are wrong to say he doesn't have dementia or alzheimers these illnesses have a family or spectrum that they come from. Parkinsons' or ALS are related. This diagnosis that he has is within those families they just have eliminated the other categories and have a specific name for this but its dementia and its one of the worst when your body and executive functions are gone. You can end up "locked in" from this frontotemporal dementia or from Parkinson's or from ALS. This is the scariest class of conditions because you can't form sentences but even worse you can't tell us what you need and eventually you can't move. Experimental treatments are all you got. Sonic treatment can break up the plaques in the brain but its rarely available and in its infancy. I kenow one lady who had fluid removed from her brain as a treatment and it worked the pressure released helped her brain heal but it only lasted months. We just don't have the typical tools for this.May God bless you and may you get enough workers for your family that you don't remain stuck in the house forever. One guy I know would take his wife to live Grateful Dead music and she would dance rt up til she died. It was his mental health care going to music but Bruce may or may not like it. Another lady I work with gets panic attacks by loud sounds even music or eating in restraints she can't filter all that stimulation.
He's 24 years her senior as well. I don't think that many people who marry someone that much older really thinks about that. I know it definitely increases with age. Bruce worked hard for years ,but with his job ,I'm hoping directors take interest & consideration the blows / concussions etc ,as to how fragile the humans brains really is. I've heard he had injuries on the die hard movies. Bruce is a great guy.
My bro wanted a bite from an apple left on his bed by his wife..he couldn’t grab apple w/his hand, but bowed his head to apple on bed to bite it. No language. Just cried like a baby. His wife abandoned him. He died in a few months. That kind of dementia is hell.
I understand. My LO has BvFTD Behavioral Variant Frontotemporal Dementia
🙏
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So sad.