Welcome to the video channel of The Association for Frontotemporal Degeneration (AFTD). Better awareness of frontotemporal degeneration is critical to improve care for individuals and families affected now, and to advance research into the cure. The videos featured here are selected to educate, inform and inspire all those interested in FTD. Watch, share and get involved!
My husband passed FTD and at the time I didn’t even think to donate his brain. I am so sorry. I wish I had but I love this website and will continue watching it.
Tina, we are deeply sorry for your loss. Please don't feel bad about not donating his brain; every person's journey with FTD is different, and decisions are made with the best intentions in mind. We appreciate your kind words about our website and your continued support. If you ever need anything or want to talk, our HelpLine is here for you at info@theaftd.org
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
my father was suffering from dementia. This year he passed away on 12th January 2024. This is a very painful disease. bvFTD Means Shrinkage Of Front Side Of Brain bvftd symptoms are personality changes, patient loses weight, has memory loss, cannot eat on his own, cannot wear clothes, cannot walk and has sleep problems In frontotemporal dementia, the patient also suffers from #apahsia Means loss of voice.he can't speak Science has just found out that there is no cure for this disease, why this disease occurs, science still does not know. Quran had told about dementia 1500 years ago. This is one of the signs of Allah See video-ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE--MHRbIejyrA.htmlsi=gq7YIGRXD7INM6g_
Thank you all for sharing your stories. I agree with Bob, the word “dementia” is misleading. People “think” they know what dementia means, i.e. forgetfulness, child-like, unable to answer questions, etc, and they make assumptions about what you can or cannot do. I wish they understood that brain cells are dying, and its a terminal disease.
My prayers are with you all and I know how you all feels, my Dad suffered same illness for 13 years until madida herbal center came to his aid and cured him with their natural PD herbal medicine, Click and search #DrMadida, and let your Parkinson Disease be taken care of and be cured just same way my Dad’s own was taken care of and cured👌👌👌
My prayers are with you all and I know how you all feels, my Dad suffered same illness for 13 years until madida herbal center came to his aid and cured him with their natural PD herbal medicine, Click and search #DrMadida, and let your Parkinson Disease be taken care of and be cured just same way my Dad’s own was taken care of and cured👌👌👌
Scientists are closer than ever to breakthroughs that will bring meaningful change to families facing FTD. Participation from the AFTD community makes their work possible! Learn more here: www.theaftd.org/research-clinical-trials/ways-to-participate/
Tanisha, we are deeply saddened to hear about the loss of your father. Please accept our heartfelt condolences on behalf of all of us at AFTD. Losing a loved one to FTD is an incredibly challenging experience, and we can only imagine the pain you must be feeling right now. During this difficult time, please remember that you are not alone. We are here to offer you support in any way we can. Our HelpLine is available to provide assistance and comfort whenever you need it. Whether you need someone to talk to, information about coping strategies, or resources for dealing with grief, please don't hesitate to reach out to us at info@theaftd.org Please take care of yourself, and know that our thoughts are with you during this time ❤️
Thanks to all of you for sharing your thoughts and experiences. Thank you for educating us on what you experience daily and how we can all become better listeners and minimize the stigma associated with FTD. @KevinRhodes, thank you for continuing to educate me and for all that you do.
AFTD is here to help! Call the HelpLine 1-866-507-7222 (toll-free) Monday through Friday from 9 a.m. - 5 p.m. ET or email us with a question at any time at info@theaftd.org.
I’m 59 and going to see a Neurologist, I asked my Dr a few times about Dementia and Frontal Lobe and also Vascular Dementia. It’s been a back and forth journey therapy partial hospital program medications 💊. I have had brain fog and TBI’s . A lot of what was said . I will see what the Neuro says.
The AFTD Helpline (1-866-507-7222 or info@theaftd.org) can provide more information on subtypes of FTD, give guidance on managing a new diagnosis, and help connect you to resources and support.
I have enrolled myself for this webinar, but I could not attend it because of illness. I have watched it offline, here on RU-vid. May I still receive an attendence certificate?
Hi Josh. We're really sorry to hear that you're struggling. It's important to remember that you're not alone. If you need someone to talk to or support, our HelpLine is here for you. Reach out to us at 1-866-507-7222 or info@theaftd.org.
I have temp guardianship of my 32 yr old son. How do i get him evaluated for bvftd? The Dr's keep turning him to mental health. He currently lives with me and we struggle with everything mentioned in this video. We are in zip code 48766 Can you please refer us to a specialist in bvftd?
Hi Jody! We're sorry to hear about the difficult journey you and you're son have been on. Please get in touch with our HelpLine for more information on research and medical centers with doctors most experienced in diagnosing the disease. Our number is 1-866-507-7222, or email info@theaftd.org.
Hi Barb. We're sorry you missed our AFTD Educational Webinar on Monday, October 2nd. We understand how valuable these webinars can be for gathering information and support. If you have any questions or if there's anything specific you'd like to know more about, please don't hesitate to reach out to our AFTD HelpLine. We are available to provide you with information, resources, and support related to FTD. You can contact our HelpLine at 1-866-507-7222 or info@theaftd.org, and we will be more than happy to assist you. Thank you for your interest in AFTD's resources and programs, and we're here to support you in any way we can.
Hi Insha! If you have any specific questions or need guidance, don't hesitate to reach out to AFTD's HelpLine. We have a team of trained social workers ready to assist you. You can contact them via email at Info@theaftd.org or by calling 1-866-507-7222. They're here to support you!
I noticed my brother having communication issues asap before others. I work as a speech and language assistant. I wish I found this when my brother was going through it. He since passed.
Neurologists need to be educated. We had researched and knew that my brother had FTD. When his Neurologist said he needed to go to a University Hospital because he didn’t know what it was, we asked, isn’t it FTD. He said, no it is definitely not that. Another doctor who didn’t know his business. So sad!!!😢
I am at Lake of the Ozarks, Mo . My Mom has this disease; we fled from it 7 years ago. it is so terrifying. I feel horrible for trying to explain my symptoms to my family. they weren't even around when she was collapsing in front of our eyes.
Sad... My mother passed away with vascular Dementia. But she was 85 years old... terrible thing to happen to the ones who raised you and then to watch them decline into a 5 year old is so very hard. Parker, I did see you on the voice... wonderful voice. Place your heart and soul with the Lord and all will be well ... we are here for such a short time. You will be reunited with her sooner than you realize.
My husband was diagnosed at the age of 58 with BvFTD and 6 months later ALS. I am a registered nurse and he was a GI physician. As devastating as this diagnosis is, I was able to seek information immediately from AFTD and online you tube resources like this. We are almost 2 years into “late” moderate stage FTD. This presentation is exceptional! Thank you. I can say that all the recommendations presented are invaluable to living with this devastating disease.
thank you im so sorry for your loss, thank you so much for doing this work in her name. the specialists i have seen largely dont seem to know what ftd is. they think its the same as alzheimers. a lot of education is necessary at all levels.
I am a nurse and this webinar was aimed at healthcare professionals. As someone with a loved one with FTD, I believe this information is helpful to everyone. Knowledge is power and the more we the caregivers know about FTD, the more we can help advocate for ourselves and others affected by this disease. Thank you very very much for this information. I appreciate the AFTD, Dr. Ducharme and everyone that put this presentation together.
Thank you DO much for viewing FTD and treatment circumspectly. Because this is not common, we caregivers may not "know" how a simple adjustment in environment or expectation can make a world of difference to simply not, jump right to "meds for desired outcome". I understand meds will eventually be needed but me changing what I can to make his life better and easier is a much desired alternative to jumping into meds to make my day easier. Thank you for educating us to alternatives.
