9 Comments

FTD AND Dementia? Talk about a double whammy! I am so sorry for the struggle. Also, happy the physicality of that struggle is behind you. Sending love and light.

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Thank you so much and thanks for reading!

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A terrific intro, and I am also on a similar journey, but my Mom was diagnosed 12 years ago, and lives with me now. It has been an extremely slow decline which is good, and bad, depending. I've been writing and recording in the middle of the night—the only time it's quiet here. I'd started writing Mom stories since way before the diagnosis and she'd developed a bit of a following on Facebook, and now here. You've got me interested in having myself tested for the AP0E4 gene, I don't know why that never occurred to me. I tested for the BRCA1 &2 genes because cancer runs in our family, because of that, Mom's the first to live long enough to noticeably develop dementia.

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I’m sorry to hear that, 12 years is a long haul. My mum and dad declined very quickly in comparison, which I think can be a feature of earlier onset forms of the disease. So good to write through and about it. I know that the AP0E4 aspect isn’t the whole story, and that 15-25% of people have one copy, but it certainly doesn’t help matters. Sometimes I wonder if it would be better not to know! X

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Either way, after caring for mom, I like to think that I will be better prepared to age the way I want to.

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Love this intro - although obviously not how tough these last 12 years have been on you. It's a lot to live with, but as someone on a sort of similar journey, it's one that feels so important to share, too, so thank you so much for doing just that! I very much look forward to reading more and hearing more about your book, too! 💜

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Thank you Cassie. It’s obviously sad to know of others on a similar path, but I’m glad you think it’s worth sharing and I’ve certainly found others’ shared experiences helpful x

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It's absolutely lovely to find you on here. My Mum didn't have dementia, but she did have a brain injury after an accident that meant she was profoundly brain damaged for 22 years, from when I was 16 until I was 36 when she died. Finding other people who have lived through a long experience of this kind of thing is rare, and was especially rare when I was much younger. I really apprecaite your sharing your experiences. It helps a lot, to hear how you got through it all.

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Ah thank you so much Clover and it’s lovely to connect with you, especially as I’m a huge admirer of your work ❤️❤️ I’ve been finding so much of value in your Substack posts - they are written with such clarity and generosity. Thanks for subscribing!

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