Book review

Reading for Dystonia

dystonia week banner 2016

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

A Twisted Fate

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

diagnosis dystonia pic

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

misdiagnosed book

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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DRD tests, dystonia, Just wobbly life

As long as there are funky socks, it will be OK

 

 

Life is better with funky socks
Life is better with funky socks

Having received the date  for the dreaded lumbar puncture and phenylalanine loading test, it time to be proactive rather than wasting time and precious dopamine on worrying.

As best I can, I am ready for the enforced duvet days which are on the horizon.

 This is my dopamine deficient/spoonie survival kit

 

  •  colourful happy socks. The best way to conjure up courage is funky socks.  The world can look dark, mood grim until you look at your brightly clad feet and they lift your mood. They work particularly well for hospital admissions when you have to wear the ugly, self-esteem draining hospital gown. Stripey toes are an absurd sight but they ground me and remind me that whatever is happening I am still me.
  • Sweets lots of sweets. I have a sweet tooth  but forget chocolate, lollipops are the way to happiness. They also distract from any nausea and feeling green.
  • books. I have collected my library stash as well as placed many on order to keep me going for the next few weeks
  • Kindle books have been downloaded for days my hands will protest at the idea of holding a physical copy
  • audiobooks have been downloaded for sleepless nights, eyeache and headaches when reading is impossible but literary input is needed. I am looking forward to Harry Potte series.
  • a list of programmes to watch on TV has been made including Sherlock, Call a midwife, Norell and Mr Strange, Pennydreadful. I am not sure I will be able to deal with BBC’s War and Peace since brain fog gives me the attention span of a gnat. Any other suggestions would be gratefully recieved.
  • Music has been downloaded. My mP3 player has been found and charged.
  • Two new fish have been added to my aquarium for me to watch from underneath my duvet. There is something very relaxing about fish swimming in the water doing their normal thing.
  • Heaties and electric heat pads are always needed.
  • A selection of different teas because Builder’s tea just does not work when you need to drink it with a straw.
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Library stash
Sweets galore!

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Tea review

Christmas is in the air

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The Christmas tree is up, twinkling away and Father Christmas is in the corner adding to the festive feel of the house. Advent is ticking by at an alarming speed – I am sure the world spins faster in December to catch you out – so it is time for card writing and wrapping pressies.

I love the ritual of wrapping. From the holding the item, feeling excited if you have found the perfect gift and tweaks of doubt if you are taking a risk to the  pile of freshly, covered pressies. I would love to say my gifts are perfectly wrapped with straight edges and crisp corners but I have the knack of creating the ‘5 year old tried their best’ look however hard I try. In my defence, the paper and tags match. It would be great to complete the traditional scene of Christmas of  them piled under the tree but experience has taught me not to attempt it unless you want expensive vet bills or customised gifts ranging from bite marks to completely shredded version. Jack Russells are too curious and present loving to leave anything around.  Favourite Christmas movies or music in the background adds to the sense of festivity. This year the  ambience is enhanced with Whittards mulled wine tea.

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I love the idea of mulled wine tea. Mulled wine is amazing but there are times it can’t be drunk including 11 0’clock in the morning. The aroma as you open the jar is Christmas and  how you expect it to be. I have found this is a tea you need to experiment with to acheive your perfect cup of tea. I have to be cautious with amount in pot and stewing time. Too much or too long, the aroma and taste can be overpowering. Trial and error has led to me to use one scoop of tea for my pot or small teaspoon of tea in a bag. This should  produce a perfect festive drink, warm replacement for real stuff.

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Christmas books are out on the shelves including my go to festive book Xmas factor by Annie Sanders.  It is well read and has become my traditional start to festive reading. It grasps the panic of  festive preparations and highlights what is important at this time of year. Trials and tribulations of family relationships are bundled up with  romance to fit the criteria of a feel good book. It is like watching ‘Love Actually’ reruns, reading this book  has to be done despite the element of surprise going years ago and I can predict the next paragraph word for word.

Other Christmas books on my reading list this year includes:

Christmas Cracker by Trisha Ashley

The Christmas Surprise by Jenny Colgan

Calling Mrs Christmas by Carole Matthews

Something from Tiffany’s by Melissa Hill

A Gift to Remember by Melissa Hill

The History of Christmas Food and Feasts by Claire Hopley

A Literary Christmas  An Anthology by The British Library

And of course you have to read every year Charles Dickens’ The Christmas Carol. My favourite edition is illustrated by Robert Innocerto.

I hope you enjoy lots of festive reading.

 

Book review

The Witches are flying …

pumpkin lantern

It is Halloween and tonight the witches will grab their brooms and zoom across the dark, chilled sky. So what better than to put on your snuggly socks, grab a warming drink of tea in your favourite mug, and read a spooky book. Though, try not to jump when there is a knock on the door…

        Discovery of Witches by Deborah Harkness

book tea witch

Witches play an important part of Halloween and there is a wide range of books based on them. One of my favourites is Deborah Harkness’ Discovery of Witches. I loved the protagonist, Diana Bishop. As an academic studying alchemy she gets sucked into a world of vampires, witches and demons when Matthew enters her life along with a mystical, bewitched book. The existence of these creatures comes to no surprise to this strong character because she comes from a long line of witches, though she turned her back on magic years before and refuses to have it in her life. Deborah Harkness description of Oxford’s All Souls College and the Bodleian Library attracts the inner bibliophile as you want to experience the atmosphere yourself. The developing, forbidden relationship between Diana and vampire, Matthew makes you unable to just read one chapter at a time. The collection of characters you meet remain with you long after you close the book for the final time. Some you love, admire and respect while others make your blood boil as they enter a scene. The trilogy grabs you into a journey of discovery of self, love, prejudice and a world through time. It will leave you wanting more.

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One Million lovely letters

One Million Lovely Letters by Jodi Ann Bickley

20150707_171535I read this for Duvet Dwellers book club in July

As soon as you have read the few pages of this book , you know you are reading a book written from the heart. It is warm, honest and Jodi’s amazing character shines through. You can imagine being  curled up on the sofa, clad in your snuggliest socks with a cup of tea, listening to her talk.

This is an autobiography of her life and how one tiny thing, such as a tick bite, can dramatically alter the direction your life takes. Her illness flips everything upside down, forcing her to learn basic skills again. The chronic nature of her condition descends her into despair and it is only the serendipitous  arrival of an app message that stopped her ending it all. Again, a small thing had  the ability to send her life in another direction .

One million lovely letter project was born and within hours the first of many letters was written. By writing letters to strangers in need of a little bit of positivity and caring, she not only helps them but herself. She uses the power of words to uplift the soul. Her writing oozes with warmth and love. It is felt in every letter you read.

This is a book to read if you are in need of uplifting and reminding how little things matter. You finish the book feeling as if you have received  a hug and been  told everything will be OK. it will also inspire you to grab some colourful pens, fancy paper and tell someone how special they are.

More info on the One Million Lovely Letter project – http://onemillionlovelyletters.com/