Ann Andrews QSM author of Positively Parkinsons
15 July 2014
Symptoms & Diagnosis, Research & Treatment, Advice & Support
$35 plus $5 postage and handling pp 176 www.calicopublishing.co.nz/book/positively-parkinsons
Ann you live with Parkinson's and have written an insightful guide written in a confident and warm manner. How do you suggest people learn the most from their visits to their Doctors?
If you have recently been diagnosed with Parkinson's you have probably been to see a neurologist. From this time on you will have two doctors in your life, the neurologist and your GP. Your GP will be the one you mostly see, you will only see your neurologist once or twice a year. Regardless of which doctor you visit about your Parkinson's I suggest you go well prepared. Take a friend or partner if that helps, their job is to take notes for you. Prior to the visit write down the questions you need answering, all the things that worry you, no matter how trivial they might sound. This written copy of the visit means you can be certain you've asked everything you wanted to. Should you be introduced to a drug programme make sure you understand the drugs prescribed, then for the next month keep a diary of how you feel each day. This will help make your GP aware of any problems you might be having.
Parkinson's requires complex care planning. What are some tips for people who need to lobby hard to get the care they need?
I'm not sure what you mean by complex care. Most people I know get help from a partner, friend or child. After sixteen years I still do the cooking and cleaning. My husband does the vacuuming. I am part of the health board system and have been accessed by a gerontology nurse. I have a walker and a stick and a step for my shower. I can have a carer to accompany me on walks sit and talk to me be there when I shower, but I don't need that. We contacted Needs assessment at the Auckland DHB.
Family and friends are often inspired to get fit based on the determination required by people with Parkinson's to cope well with the disease. How can this courageous behaviour inspire others?
My husband was already a life time jogger and I've encouraged him to keep this up. For myself I prefer Pilates exercise and walking.
Parkinson's can cause significant stress on relationships. What can be done to keep relationships healthy?
I haven't noticed too much stress. The main thing I think would be if a partner began to take over speaking and acting for the person with Parkinson's. I have noticed that nurses caring for people with Parkinson's in homes for the elderly quite often don't understand the complaint at all. They are inclined to not see the patient as an intelligent individual because their voice is too soft and they take small steps. There is a need for raising more awareness in the wider neighbourhood of everyone who comes into contact with anyone who has Parkinson's.
This election year what would you like political parties to address pertaining to Parkinson's?
I don't think Parkinson's is a political problem. There is a society that should lobby for us and encourage research.
Dr Barry Snow, Neurologist on Positively Parkinson's...
There is a saying in Parkinson's disease medicine that when you have seen one person with Parkinson's disease, you have seen one person with Parkinson's disease. Parkinson's is a complex and intensely personal disease. Each person, patient, carer or health professional is affected in different ways, and each person has a story to tell. I have been working now for 25 years with people with Parkinson's disease, and not a week goes by when I don't learn something new. I am repeatedly reminded that each person has a unique version of the disease.
There is so much to learn and so much to know about living with the condition. There is also a bewildering amount of information in books and on the internet. Much of this information is impersonal, clinical and of uncertain relevance to someone coming to terms with their own version of a variable condition.
Ann has her own story of Parkinson's, and here she has shared stories of others. Each is important, each is relevant and each deserves to be heard. My congratulations to Ann for taking on this task. I hope everyone values reading this book as much as I have.
Dr Barry Snow, Neurologist MBChB, FRACP, FRCPC
What others think of Positively Parkinson's...
‘I tell people who ask me about Parkinson's that it isn't the end of the world. You have to adapt your life to it. Everyone who has Parkinson's should read this book. It should be their bible. It's inspiring, reassuring and easy to follow.' Sir John Walker, Olympic Champion
‘Ann Andrews presents this serious and often overwhelming subject in an informative and engaging way, with warmth and good humour. Her insights into her personal journey with Parkinson's are generous in their honesty and sensitivity.' Deirdre O'Sullivan, CEO Parkinson's New Zealand
‘Until medical science finds a cure, people with Parkinson's have to learn how to cope with the disease, and this book will help. It is a must-read for anyone with Parkinson's and for their family and friends.' Max Ritchie, Executive Director Neurological Foundation of New Zealand
You can go into the draw to win a copy of this great book, Just CLICK HERE
Competition closes 29th July 2014. Open to NZ residents only