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Living with frontotemporal dementia | Wendy's story

FRONTIER FTD Research Group

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In this video, Wendy describes the challenges of arriving at a diagnosis of frontotemporal dementia (FTD), managing her symptoms, and finding meaning and joy in life whilst living with FTD. FTD is the second most common cause of dementia in people under 65 years of age. For more information on FTD, visit: https://frontierftd.org

The FRONTIER Research Group is a specialist research group at the Brain and Mind Centre, University of Sydney, dedicated to improving the lives of people living with FTD.

To keep up to date with FRONTIER's latest research on PPA and FTD, visit:
Twitter: Frontier_Usyd
Facebook: frontierbrainandmind

Video production: https://www.jonathanbakercamera.com
Music: Wishes by Lane King (Artlist)

20 Comments

@nickywilks7928 3 years ago

What a lovely couple....it made me smile that they blames certain situations on Dorothy.

@rajkagolub8667 3 years ago

Thanks for sharing this. I have a husband with FTD. Wishing you all a lot of strength and patience 💪

@wdestrempsmecke 2 years ago

My Mum has FTD. It’s a cruel disease. Wished on no one. Godspeed.🙏🏼🙏🏼

@chrisganesha 2 years ago

Beautiful story of strength with grace. Thank you so much for sharing. God bless you all. ❤️🙏🏻

@kimgloria6094 3 years ago (edited)

What was your early symptom ? I love calling the disease Dorothy. I think that's adorable . You need humor in life. and how was it diagnosed ?

@lindatohara6438 2 years ago

My mom had vascular dementia. We never knew when she had moments of clarity but she stopped talking the last 2 years before she passed.

@lizkearsing325 3 years ago

My late husband had FTD. Such a devastating experience!😢

@LightfootDerek 2 years ago

My wife was diagnosed with this disease in February 2023 although looking back on it she probably had it 6 months before that date. I have been in denial about it since it that only lasts so long. I don’t have anyone to help me. We have no kids. I have no idea how to handle my wife with this disease. I don’t want to put her in a nursing home when it gets worse. I want to take care of her here at home. I’m devastated. We have been married for 34 years. It is a horrible disease and aggressive and progressive. This is going to take the love of my life away from me.

@BetrothedtotheBeloved 3 years ago

God bless you both! I say I'm "living" with Cognitive Impairment. That doesn’t define me but neither does it mean I'm in denial. My oldest daughter "lives" with dyslexia but, in no way, does it define her. She teaches people to sing. If she said "I'm dyslexic!" she might not have achieved very much because she would be defined by a label.

@kajaloraon5494 5 months ago

My heart is in awe of seeing that she is aware of it. I don't know the progression and how it affects other people who have it, but my Father has it, and it's like if he isn't aware of his condition and forgetting things has memory span of few minutes

@iashakezula 2 years ago (edited)

Thanks for sharing. I liked the idea of naming the dementia character but that works when the patient is still aware . I wish I can do that with my mother in law. Any update 2024.This disease of the mind is very painful to handle by their love ones. The person you loved is no longer there yet still alive.

@avrillo 1 year ago

Sorry Wendy to read your new FTD dementia. You sound great and look great too, I’m sorry you have FTD or ‘Dorothy’. I’ve recently been diagnosed with FTD too, any advice you could share would be good, just a couple of sentences. I think my daughter will need to test for any genes of FTD. You are obviously a strong person, you’re great at communication at present too. Wishing you well and hoping I get through this as best I can, like yourself. ❤❤❤