Still wobbly but back to blogging for Dystonia Awareness!

 

I can not believe it is over 2 years since I last posted. It is Dystonia Awareness Week so I thought I would check in and do my part. Every little thing matters in the greater picture.

What has happened since I was last here?

• As expected I am still wobbly and life is still up and down (many downs) and  I am trying to smile and appreciate the good things when I see them.  It mainly works or at least helps.
• Bazil, my scooter is no more but recently Herbie has arrived to give me the independence I need and crave
• My daughter is now 18 – eek! I feel old
• Pip my dog is now six but still mad and lovely
• The shed did not work the magic I hoped. I guess I was expecting miracles in hoping it would solve hubby’s depression and stress. It helps but life is still very hard being my carer instead of just a husband.
• I have been focussing on book blogging on Duvet Dwellers Books
• And trying to write a novel

 

What have you been doing?

 

As part of this year’s week of awareness, I have put a bear I made up for auction. He can be found here.

More soon!

 

Reading for Dystonia

For those that follow my other blog, you know I am wobbly by nature with a condition called dystonia. This week is Dystonia Awareness week in the UK so it seems fitting to review 3 books about the condition. When I was first diagnosed , as a bookworm, my  instinct was to find a book so I could find out more about this neurological condition. Google is great for many things but I needed words from people with the condition, to understand more and learn how to live with it. To my dismay, there were textbooks with prices beyond my bank balance but no sign of the books I craved, despite the condition being the third most common movement disorder and it affects at least  70, 000 people in the UK.  Roll on a few years I have found these.

A Twisted Fate My Life with Dystonia by Brenda Currey Lewis

I stumbled across A Twisted Fate on Twitter and I am so glad I did. It has become one of my firm favourites in my Kindle library.

Written to spread much needed awareness of dystonia, Brenda Currey Lewis gives an honest, down to earth account of her life with generalised dystonia which began in childhood as well as a clear overview on what dystonia is.  Her story gives an insight into life with the condition and  shows how dystonia affects all parts of life including the lives of those around you. There were so many times I could relate to her experiences and I am glad my dystonia waited until I was older to surface in the 2000s. The writing style allows her strong character to come through and I imagine she would be amazing to talk to over a cup of tea.

I would recommend this easy to read, enlightening book to everyone who wants to find out more about the condition.

Diagnosis Dystonia by Tom Seaman

This was the book I wished I had found as I wobbled out of my neurologist’s room with a diagnosis. Diagnosis Dystonia covers a range of topics a newly diagnosed person needs to know, as well as information for those who have had the condition for a while. It is a book which is obviously written  with care and consideration of what the reader will need. Part memoir, describing his own journey with cervical dystonia and part guide to this condition, it delves into the physical and emotional side as well as different types, treatments, daily living and gaining support from others. Tom Seaman has written a book that gives an insight into the condition and shows ways to live with dystonia. It tells you there will be bad days but there are ways forward, to adapt and live your life. I have a rare form of dystonia (DRD) and there are parts that are not relevant but it doesn’t matter. There is something for everyone in this book. It can be read from cover to cover or dipped into when required. If I had this book when my own wobbly journey began it will look well-read with it opening naturally at certain chapters by now.

For those with the condition, it is a book of hope, determination and gives an insight into the world of dystonia so you can help yourself be your own advocate. For others, it gives you an awareness of the condition with all its ups and downs so you gain an understanding of the condition and support people may need.

Tom Seaman works hard to spread awareness via his blog

Misdiagnosed by Jean Sharon Abbott

I have a rare form of dystonia – dopa responsive dystonia (DRD) which affects approx 1 in 2 million people. I have followed Jean Sharon Abbott on her blog Rainy Day Friend as she documents her life with this condition. I was excited to discover she was writing her memoir.

Misdiagnosed follows her life from childhood with the diagnosis of cerebral palsy  to when she was given the correct diagnosis of DRD. Unlike some dystonias, DRD can be treated with a drug commonly given to those with Parkinson’s disease. This small, yellow pill has the ability to transform lives. It can be the difference between  being in a wheelchair to climbing mountains. This positive book shows her strength and determination, the ups and downs of living with dystonia and appreciating the small things in life many people overlook.  It also highlights the need for awareness of dystonia so correct diagnosis can be given.

Jean Sharon Abbott’s has appeared on TV shows, written about in newspapers and magazines worldwide. Since her story has been told, others have been given the correct diagnosis so they are also living a life they never thought they would.

 

Useful links:

The Dystonia Society UK

Dystonia Medical Research Foundation

Michael J Fox Foundation

 

 

 

 

 

 

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