June 06, 2017

What I read this week ..Michelle from the Alzheimer's NSW library - on Primary Progressive Aphasia (PPA and Frontotemporal dementia

*email nsw.library@alzheimers.org.au to borrow resources
 bfn Michelle 

available on;

  • book or 
  • CD 
Where the Light Gets in : Losing My Mother Only to Find Her Again

Kimberley Williams  tells us about the journey her family had with her mother’s Primary Progressive Aphasia (PPA).

PPA, which is still considered a rare disease, a disease under the umbrella of Frontotemporal Dementia (FTD), PPA is characterized by onset at an early age, and often hits people well before they are considering retirement.

Along with the lack of comprehension and language come losses of motivation and empathy and so it is often an incredible challenge to find ways to occupy the person's day.

Kimberley Williams-Paisley's book is a good step in the direction of educating people to the difficulties of PPA. 

She discusses how it feels to have unresolved issues with your mother, difficulties with your father re-partnering while your mother is still alive and the difficulties with dealing with a mother who is frustrated and unpredictable due to her loss of language skill and other brain changes to how to deal with you mothers inability to be a safe loving grandmother to your children.

This book is similar to Still Alice but from the daughter’s perspective and it deals with difficulties that families face. If you have a family member with Frontotemporal dementia or APP or if you are trying to understand what it would be like to have a family member with these – this book will give you valuable insights and a deeper understanding to help you be more supportive to carers. 

see also 

Green vanilla tea
Marie Williams

When Marie Williams' husband Dominic started buying banana Paddle Pops by the boxful it was out of character for a man who was fit and health conscious. Dominic, Marie and their two sons had migrated to Australia to have a life where they shared more family time -- when gradually Dominic's behaviour became more and more unpredictable. It took nearly four years before there was a diagnosis of early onset dementia coupled with motor neurone disease. Marie began to write, as she says, as a refuge from the chaos and as a way to make sense of her changing world. Her book, Green Vanilla Tea, has just been named winner of the Finch Memoir Prize.

[available in book or CD DVD ]
available for loan to members of AANSW - if you would like to reserve them please email the Library on nsw.library@alzheimers.org.au 

Still Alice a novel by Lisa Genova

Alice Howland is proud of the life she worked so hard to build. A Harvard professor, she has a successful husband and three grown children. When she begins to grow forgetful, she dismisses it for as long as she can, but when she gets lost in her own neighbourhood she knows that something has gone terribly wrong. She finds herself in the rapidly downward spiral of Alzheimer's Disease. She is fifty years old. Suddenly she has no classes to teach, no new research to conduct, no invited lectures to give. Ever again. Unable to work, read and, increasingly, take care of herself, Alice struggles to find meaning and purpose in her everyday life as her concept of self gradually slips away. But Alice is a remarkable woman, and her family, yoked by history and DNA and love, discover more about her and about each other, in their quest to keep the Alice they know for as long as possible. Losing her yesterdays, her short-term memory hanging on by a couple of frayed threads, she is living in the moment, living for each day. But she is still Alice.

also on DVD 

Looks Like Laury Sounds Like Laury, 

By Pamela Hogan & Connie Shulman

What would you do if you started to disappear? At the age of 45, our friend Laury Sacks, an ebullient actress and the doting mother of two small children, had a reputation as the quickest wit in the room. At the age of 46, she began forgetting words. Soon she could barely speak.

Our film, Looks Like Laury Sounds Like Laury, captures one year in the long, but short journey of frontotemporal dementia, a little-understood disease that strikes people in the prime of life.
But back to Laury. She lived on the Upper Westside in Manhattan with her husband, Eric, and their two young children. She had been an actress/writer for many years prior to having kids, and then devoted her time to being a mom and writing a memoir about her unconventional childhood. But a memoir requires memories, and when gregarious Laury suddenly became quiet, she began to have difficulty accessing hers.

*The changes were subtle at first. She asked Pam to meet for coffee one day, but it was surprisingly difficult to engage her in conversation. To the question “What’s going on, am I boring you?” she answered prophetically, “No! I’m just in my head. ” Then she offered a reassuring hug – which wasn’t reassuring at all.

*Everyone misread the cues: “We’re not as close as we used to be;” “She must be mad at me;” “Maybe she’s depressed.” As Laury’s friend Nelsie said, “I don’t think it ever occurred to us she couldn’t access language, that she was trapped in her brain and couldn’t access it.”

*But Laury was an actress, and she was acting the hell out of her new part – a woman disappearing.
The film came about when Connie suggested making a film to capture her mysterious new life – and Laury jumped at the idea. It is the profoundly personal portrait of a woman who is facing the unthinkable. As she says straight to camera the first day of filming: “What do I hope for? I hope for – the truth!”

*Following Laury through her day to day life over the course of a year, conversations begin to resemble the famous Abbott and Costello comedy sketch “Who’s on First?” as Laury gives rapid-fire “Yes!” “No!” “No-Yes!” answers, and confusion reigns.

*Her husband Eric senses that not only does she grasp the absurdity of the situation, but “at some level she thinks its funny.”

to view clips -

The banana lady – review by one of our carers/library members

My husband has Semantic dementia, which is disease of the brain in the FTD (Frontotemporal dementia) group and “the banana lady” and other stories of curious behaviour and speech is one of the best collection of case studies I have read on this subject. Semantic dementia is quite rare, and I felt very supported by reading this book as the descriptions presented are so similar to what I am experiencing as a Carer.
There has been quite a lot mentioned about language/comprehension problems, but this book also highlights the behaviour issues which can be very challenging indeed.
It is easy to read and there is an excellent chapter on Tips for Caregivers..

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