Anne's Story - Remaining positive with a rarer form of dementia

[TamsinT]

“It’s turned our lives upside-down really,” – Tony Hoad

In this article from Dementia Together magazine, Anne Hoad and her husband Tony discuss how life has changed since Anne’s diagnosis with posterior cortical atrophy (PCA), an atypical kind of Alzheimer’s Disease.

Anne attends community groups and is keen to provide peer support to others in her situation.

“‘There’s a lot of people out there that have this and think, “Oh God, what do I do now?.

It’s hard when you get to the stage I’m at. If we can help anyone really, it’s a good thing.”

You can read the article online here: https://www.alzheimers.org.uk/get-s...together/remaining-positive-rare-dementia-pca

You can also order a physical copy of Dementia Together magazine here:
https://www.alzheimers.org.uk/get-support/publications-and-factsheets/dementia-together/subscribe

Please feel free to leave comments on the article below!

 

[Stephenb905]

Having read Anne and Tony's journey it very much mirrors ours, my OH has only recently been formally diagnosed following a PET scan, I think we're both struggling, me with trying to work out how to help best, being really anxious when we're out and about, doing all the everyday things we need to do, and my OH struggling with all the changes this brings, not just visual changes, but also miss seeing, confusion with everyday objects, taps!, and of course losing her independence.

We've had very good support from the local team, but it has taken a long time from the very early vision problems until today, but that isn't a reflection on her care team or our GP, just a fact of its rarity and the confusion with other visual problems

I'm hoping now we can move forward with more targeted support so that my OH can regain her self confidence, self worth and start to rationalise what the diagnosis means.