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Book Details
Abstract
What's happening to me?'
Successful translator and linguist Helga Rohra was understandably good with words - that is, until she found herself getting in a muddle when she spoke. She started to forget the way home, even though she could remember her address. Her confusing symptoms increased and Helga was diagnosed with dementia at age 50 - but she hasn't let herself be labelled with the usual stereotypes.
With entertaining vim Helga shows that her life is still as abundant and self-determined as ever, dismantling the negative stereotypes that often surround a dementia diagnosis. She speaks frankly and with humour about her diagnosis and life with young onset Lewy Body Dementia. She explains the changes in her everyday life and the challenges she faces, and shares practical tips that prove it is possible to live well with dementia. Helga also talks about her activism work, which has made hers one of the key voices internationally in dementia advocacy.
Helga writes of the trauma of diagnosis, and seeking support. Yet her fighting spirit meant she became a great advocate for living positively with dementia. This book is a testimony to her amazing resilience, despite her daily battles with this invisible condition. Helga is a true dementia expert!
Christine Bryden, author of Who Will I Be When I Die?, Dancing with Dementia, and Nothing About Us, Without Us!
Helga Rohra worked as a freelance translator specialising in medical and scientific translations. Even before her diagnosis of Lewy Body dementia, she advocated for people with disabilities and dementia. She is Chair of the EWGPWD (European Working Group of People with Dementia) under the umbrella of Alzheimer Europe, Vice Chair of DAI (Dementia Alliance International), sits on the board of Alzheimer Europe, and is also the Chair of Trotzdemenz e.V. (a German organisation run by people with and without dementia to raise awareness of the condition). Helga lives with her son in Munich, Germany.
Falko Piest assisted Helga with writing this book. Falko Piest is an academic at Dementia Support Stuttgart.
Speaks truth to power: listen, learn, ACT!
Professor Peter Mittler, CBE, Human Rights Advisor, Dementia Alliance International
Table of Contents
| Section Title | Page | Action | Price |
|---|---|---|---|
| Dementia Activist - Fighting for Our Rights by Helga Rohra | 3 | ||
| Introduction | 9 | ||
| One - Prior to the first symptoms | 14 | ||
| Two - Summer 2008: \nThere’s something the matter with me | 19 | ||
| Three - Summer 2008: \nFirst consultation with the doctor–“Go for walks” | 26 | ||
| Four - Why is early onset dementia so late in being recognised? | 30 | ||
| Five - Spring 2009: At the University Health Centre – Waiting and hoping | 37 | ||
| Six - The diagnosis: \nI feel as if I’m falling | 42 | ||
| Seven - About Lewy Body dementia and how it has been for me | 47 | ||
| Eight - Summer 2009: At the bottom of the ladder and first aid from the Alzheimer’s Society | 55 | ||
| Nine - Doing battle with the bureaucrats | 63 | ||
| Ten - Appointment \nwith the assessor | 66 | ||
| Eleven - Autumn and winter 2009: \nHelen Merlin “Speaking for myself” | 74 | ||
| Twelve - Shame, or the problem of being open about symptoms | 78 | ||
| Thirteen - January 2010: \n“THIS MAKES SENSE!”–\nI step out of the shadows | 81 | ||
| Fourteen - March 2010: \nThessaloniki– \nOn my own | 86 | ||
| Fifteem - My everyday life and how I cope with it | 95 | ||
| Sixteen - 16 March 2010: \nI am elected to the board of the Munich Alzheimer’s Society | 99 | ||
| Seventeen - Spring 2010: \nThe media | 104 | ||
| Eighteen - Speaker at a congress on dementia: “Why many people I speak to declare that I am well” | 109 | ||
| Nineteen - July 2010: \nAt the golf course | 117 | ||
| Twenty - Why it’s wrong to compare people with dementia to children | 122 | ||
| Twenty One - Things that I would like people to do when interacting with people with dementia | 125 | ||
| Twenty Two - Invisible hurdles in \neveryday life | 129 | ||
| Twenty Three - Conferences – Talks – Events | 132 | ||
| Twenty Four - Visibility and the “Dementia Card” | 138 | ||
| Twenty Five - Mulling over my \nfavourite topics | 144 | ||
| Acknowledgements | 148 | ||
| Afterword | 150 |