Dementia Success Stories:
“How we made a difference for self and those around us AFTER diagnosis”
A dementia brain-storming project by participants of PWD Perspective newsletter

1.  Label:    Gill Haygreen
2. Previous/current occupation(s?): 10 years – IT in Magazine Subscription, Housing Officer – Social Housing/local authority. Final (and dream!) job:   Housing Support Officer for YMCA working with 16-25 year homeless young adults. NOW: Early retirement
3. Nation, & state if desired: Derbyshire /Staffordshire UK. (Living on a boat so no real permanent address)
4. Age at tentative diagnosis:  58
5. Year of diagnosis:  2012
6. How long for definitive diagnosis:  3 years
7. Type of dementia, if known: Early Onset Alzheimer’s Disease – [abnormalities in medial temporal lobes, more on the right side]
8. Since diagnosis, what one or more action, success, or accomplishment do you take pride in? A) I started a blog – www.gillhaygreen.com called ‘Before I Forget’ to record my own personal experiences of living with the disease. I also hoped that it would be part of a growing circle of people writing to educate what it is really like to live with it.   I am writing all my memories down which is turning into a book which I am not sure anybody will be interested to read but it helps me. It is not a ‘memory book’ because it is now over 70,000 words long! ; B) I am proud to have joined an online group of friends who support each other online across the world. They have inspired and motivated me to try and bring some awareness and education locally of what it is like to live with the disease and how services can learn from us, the people with dementia. I am already in touch with someone and am now about to really get involved.; C) Since having to stop work, I have started taking photographs and then make cards with them. I am proud of them because they are a reflection of what I can do and who I am.; D) I have more time to read now and I review books for authors and publishers. It is important to promote books especially if you are a new author trying to get others to read your work, and what better way than by personal recommendation. It is hard work when I have days when my ability to process words is not always great, and writing the review is even more difficult. But, I use this as my ‘brain training’ exercise and my reward can be an email from an author regarding my review.
9. What do you wish your primary Physician knew about dementia? … about you? I am extremely fortunate to have a lovely GP who treats me as a person, not a disease. She admits herself that she wishes she knew more about the disease, especially for YOAD.   That is the thing I wish for primary physicians to know about, what problems there are for people who are newly diagnosed. I wish that more PWD could be more involved in service management to educate everyone working in the field.
10. What do you wish your specialist Physician knew about dementia? … about you? Again, I am fortunate to have a Consultant who listens and tries to accommodate my particular needs and wishes.   I also wish that she has more resources to call upon to give/point to people with newly diagnosed dementias.   We have discussed the fact that as yet information regarding EOD is lacking and she says including herself.   I wish that more PWD could be more involved in service management to educate everyone working in the field.
11. What do you wish your family knew about dementia? … about you?  I wish my family would acknowledge I have this disease. I want them to journey with me, learn with me, understand more with me, and not fear discussing it now because nobody thinks it is time yet.

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