Patients & Carers

The Comfort of Home for Parkinson’s Disease: A Guide for Caregivers

Maria M Meyer, Paula Derr, Susan C Imke

ISBN: 0-9664767-7-8

Being a carer, especially of someone with Parkinson’s, can be mentally, physically and emotionally challenging. This practical, hands-on guide is the fourth in an award-winning caregiving series, The Comfort of Home, published by Care Trust Publications provides information to help carers through all stages of Parkinson’s.

Care Trust Publications LLC

March 28, 2007

^ Living with Parkinson’s DVD

Although Parkinson’s is not a rare disease, many people know very little about how people live with it. Due to the complexity of the illness and the wide variety of symptoms it produces it is understandable therefore that it is difficult to get a sense of what it is like to live with Parkinson’s on a daily basis.

Thanks to Norges Parkinsonforbund, help is now at hand. An excellent series of five films on DVD provide a realistic picture of the challenging opportunities faced by people with Parkinson’s and their families.

The DVD, produced thanks to the support of Solvay Pharma and in co-operation with the EPDA, is free of charge to people with Parkinson's and their families but is otherwise available for a small fee.

^ NEXT TO ME - Luck, leadership and living with Parkinson’s

David Jones

ISBN: 1857883578

 “The doctor stopped writing up his notes. He walked over to me, took off my glasses and gently tapped my forehead just above the bridge of my nose.

‘You’ve got Parkinson’s Disease,’ he said, and left the room.

In that startling moment - at half past eleven on the morning of 25 July 1982 - the pattern of my life changed forever. I was 39 years old.”

So begins David Jones’ compelling autobiography of his life so far, from his humble beginnings as a paper boy to his position as Chairman of NEXT and one of the High Street’s most successful leaders.  

September 2005

^ A Ritual – Moving through the “Off”

Melanie Maar

Melanie Maar is a dancer, choreographer and yoga teacher living in New York City. Parkinson's and her father has been and still is an omnipresent fact of life; longer than Melanie can remember. Her struggle to overcome her initial embarrassment towards her father's condition when she was very young, is a testament to her strength that she has excised her own demons to accept her father for who he is and not the condition that has encroached upon both their lifes. The article describes her fight to overcome strongly personal and emotive conflicts, to portray both her love for her father and her father's plight, in her dance and work.

Revised May 2006

^ I’ll Hold Your Hand So You Won’t Fall – A Child’s Guide to Parkinson’s Disease

Rasheda Ali-Walsh

ISBN: 1 873413 13 0

In Helping children to understand Parkinson’s disease, author Rasheda Ali-Walsh, taps into first hand experience of living in a family affected by Parkinson’s disease since her father, the world famous boxer Muhammad Ali, has suffered from the disease for over 20 years.

The book was written to help children understand the condition that may be affecting their parent or grandparent and creates a foundation for dialogue between children and caregivers by providing questions to ask of children to stimulate interaction and offers answers they can easily understand.

While the book primarily aims to help children understand what is happening to their loved one, it is also a valuable resource for all family members faced with a similar situation.

March 2005

^ My Weekly Article

Extract from My Weekly women's magazine featuring an article on Rasheda Ali. Rasheda talks about her new book (I’ll Hold Your Hand So You Won’t Fall – A Child’s Guide to Parkinson’s Disease) and explains how she has studied Parkinson's disease in order for her to understand the impact that the disease has had on her family.

Also, a personal encounter by David Jones, Chairman of Next Plc and Vice Chairman of Morrisons Plc, who has been living with PD for over 20 years, describing his personal experience of the onset of PD and the ups and downs that the disease has had upon his emotional and family life.

13 August 2005

^ SHAKIN' NOT STIRRED - Making the most of your licence to spill !!!

Tom Isaacs

Presentation at the EPDA 5th multidisciplinary conference ' Working in Harmony - The Team Approach,' Lisbon, Portugal May 2004

Tom Isaacs was diagnosed with Parkinson's disease in 1996, at the young age of 27. In this presentation at the 5th EPDA Multidisciplinary Conference, he gives a personal reflection upon the impact of PD in his life and how he has learned to cope with the disease.

May 2004

^ The Now of Snow

June Hall

ISBN: 0954621506

A first collection of poems that capture the bitter-sweet of life with moving freshness. Painful but life-changing subjects - coming to terms with PD, the loss of a child, the end of a relationship - are balanced with lighter and more humorous ones - differences between the sexes, the wonder and surprise of children as they grow and develop, finding a father, the nature of art and creativity, the joys of summer and nature.

March 2004

^ What a Difference a Day Makes

Betty Price

Betty Price first noticed symptoms of early onset Parkinsons at the age of 14.

As a child, a single day changed Betty Price’s life forever: she shares her experiences here and tells us why she wouldn’t alter a single thing. Whilst her condition has gradually robbed her of her ability to play the piano, her natural dexterity soon found another outlet revealing a latent talent.

Betty specialises in cake design but also works with cold porcelain to produce bride and bridesmaids' posies and bouquets.

Summer 2003

^ Pussy Cat, Pussy Cat, Where have you been?...

... "The Lord Chamberlain is commanded, by Her Majesty to invite Mr.& Mrs. David Price to a Garden Party at Buckingham Palace on Tuesday llth July 1995 from 4 to 6 p.m."

...To this day, I still cannot find words to describe what it was like seeing our lovely monarch, a vision of white and pale blue, gliding towards us; smiling at us as though she was greeting a couple of old friends she had not seen for years.

...I couldn't help but smile; little did she know that it was a first for her parents as well. I had spent two weekends at the "Post House" in Lancaster, back in the eighties, where the lovely "Young Think Tank" meetings were held there and Paul and Diana Lewin coined the phrase "YOUNG ALERT, PARKINSON, PARTNERS AND RELATIVES" now famously known as "YAPP&RS". I think that was 1988....?

^ Chronic Disease and Grief

Svend Anderson

Svend Andersen has Parkinson's disease. Based on his personal experiences and his professional background as a Psychologist he shares his thoughts on the grief that follows having a chronic debilitating disease.

November, 2002

^ PARKINSON'S DISEASE: My Constant Companion - A Neurologist's Experiences As a Patient

Kari Aho

When Dr. Kari Aho, a neurologist, developed Parkinson's Disease just short of ten years ago, his profession helped him get over his initial bewilderment, but no one can avoid the changes in life and the struggle to adapt that accompany Parkinson's. Years of the disease have taught even the neurologist many things that hadn't occurred to him earlier, the most important being that improved medications have altered the course of Parkinson's disease. The picture found in old books, presenting the patient with Parkinson's as a miserable figure with bent knees, can be scrapped.

Successful treatment of Parkinson's disease is an art. In addition to a good doctor–patient relationship, the patient's own activity and initiative play a central role. Alongside medical treatment, the right type of nutrition often brings added help.

July, 2002

^ What Patient's Say About PD

Ena Berglund Wiberg

The English version of this book is now available, thanks to the support and commitment of Poul Vinther, Denmark (www.vinthers.dk/parkinso.htm)

The retail price of the book is: €11
For each book that is sold, the EPDA will receive a donation of €2

‘What the Patients’ Say about PD’ can be sold via the national organisations and can be ordered in boxes of 50, directly from www.hornslet-bogtrykkeri.dk

Hornslet Bogtrykkeri A/S
Tingvej 36, DK-8543 Hornslet
Tel.: +45 86 99 45 11
Fax.: +45 86 99 55 49

A special link will be made for ordering the book. Minimum QTY is 50. Orders are received via Fax or Email.

^ Health is between your ears. Living with a chronic disease

Svend Anderson

Svend Andersen has gathered his experience and knowledge of Parkinson's in a book about health, vitality and view of life and it is recommended to patients as well as people in general. He ties practical and theoretical experience together in a gentle and urgent language well suited to make the reader wiser about how life can be living with a chronic disease.

Patients will not be the only ones who profit from reading this book, but also people in general, as long as they have reached the stage where they know that life is eternally changing, and some changes are hard to accept. In six chapters Svend Andersen looks at problems that most people will encounter sooner or later if they run into a - so far - incurable disease that interferes more and more with their daily abilities. The basis for the whole book is the idea that health is a (consciously chosen) goal, while disease in certain cases is the path that life presents. Everyone is free to set his own goals.

September 2002

^ Parkinson's: A Patient's View

Sidney Dorros

ISBN: 1872362702

In the first British edition of this classic book, Sidney Dorros tells the remarkable story of how he dealt with Parkinon's for more than 20 years and learned to achieve 'accomodation without surrender'.

Published by Class Publishing

June 1997