The Complicated Business of Talking with Dystonia

The Complicated Business of Talking

Following my last post and the goal to reveal snippets of life with living with dystonia it felt apt to share the first ever post I made on my old The Ups and Downs of being Wobbly in 2013. It only feels like yesterday.

Dopa-responsive dystonia affects all my muscles now including my voice.

The Complicated Business of Talking

September 2013

I never realised how complicated talking and holding a conversation was until it began to go pear-shaped. To talk to someone many things have to occur:

1, you need to listen and remember what the person is saying
2, you need to think of an answer and the words you wish to use to express it
3, send these words to your voice box, tongue and muscles in your mouth
4, the voice box has to do what voice boxes do and your muscles have to co-ordinate themselves so the words come out.

If any of these stages falter the conversation can become tiring, difficult, frustrating and bizarre. Sometimes only one or two stages of the above partially or completely fail so I can work round it. Other times nothing will work so it’s easier to keep my mouth shut.

I can ask my family multiple times the same question before I will remember it. They must get sick of me asking 5 times whether they would like a cup of tea before I can remember it long enough to get to the kitchen. I would definitely be useless as a waitress. Telephones and having conversations in supermarkets are the worst. I think my brain decides that holding the phone and having a conversation in a noisy place is too hard and it prefers to go on strike.

There are times I know what I want to say. I can even visualise it but the word refuses to come. Good job my family are good at listening to convoluted explanations when a simple sentence would have done. Why say “it’s on the table” when you can say ” it’s on the thing in the kitchen. We sit at it for dinner”. Gestures are good too. My daughter will win at a games of charades with the practise she gets.

Other times, the words are there but trying to get my tongue, voice box and muscles in my mouth to work together is impossible over the stupidist words. Why is it so hard to say peas or beans or yes? At least the long explanations can resolve that obstacle with “green round things” or “red round things”. Again, charades work or you can play a game of fill in the blanks of a sentences. For example, “Would you ____ a cup of ____ ?

If all else fails, you can just be quiet and nod in the right places.

I am so lucky I have a great family who accepts our new way of communicating and they are becoming very good at it. I am lucky I have my trusted yellow ones (Sinemet) which gives my brain a kick start so I can have periods of the day when talking is easy and understandable. In these brief periods, I can do the phone calls I need to make and talk to friends when they visit. I guess, however tiring, difficult and frustrating talking can be, it can make life different and more interesting.

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Green Rounds Things

Love

Goal of 2019 – shouting “This is me!”

Happy New Year! The turbulent 2018 is over and a fresh chapter has begun. The first day of the year is the perfect time to take this blog in the new direction as discussed in …. I will still be blogging predominantly about my love of books, with a hint of Flamingo Paperie cards but also an insight into my wobbly life. Ever since I wrote my first post 6 years ago on my first ever blog The Ups and Downs of being Wobbly I have been anonymous – no photos of me, and I never used my name until very recently just my pseudonym, Wobblypip. Why?

Fear  – of people I know reading my thoughts, being laughed at or told I was crap.

But no more. This year I want to make a small difference to dystonia awareness using this blog and claim my words as my own. It is time to step out of the duvet and say “this is me”. I watched The Greatest Showman on Christmas day and loved it, particularly the powerful song This is me. It gave me the final push for this introduction post only 6 years late.

I am Katie – book blogger, writer, tea addict, lover of snuggly socks and wobbly person. I live in Yorkshire near the sea with my hubby, daughter and my dogs.

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This is me

My blogging journey began in a blog  documenting my wobbly life in 2013 as I wanted to raise awareness of DRD but this side slipped away when this blog was set up to support  Duvet Dwellers Book Club a book club for spoonies I founded with two others. I loved talking about books with others but chronic illness meant I could not commit to time needed to run it and there are some wonderful online book clubs to join. This blog remained but things are now coming back full circle with the aim of raising awareness, and making a difference.

I have a rare form of dystonia, dopa responsive dystonia or DRD. With the odds of having it as 1 in 2 million I would rather have won the lottery. Like people with Parkinson’s disease my brain does not produce enough dopamine to move properly. I rely on drugs to keep me moving, walking, talking and writing. They help a lot but I am still wobbly, slow and resemble a sloth at times. My mobility scooter is my trusted friend.

Awareness of dystonia in all its forms from writer’s cramp, cervical dystonia which affects the neck to the rare ones is important because it helps speed up diagnosis, raises funds for research to find a cure, better treatments and support for people with the condition. There is a high rate of loneliness in people with dystonia due to embarrassment and fear of ridicule. Muscles can contract and contort in some unimaginable ways that are impossible to do voluntarily. I am always in awe at the postures I find myself in.  Tremors can be hard to watch and when the voice is affected it communication is hampered. There can be accusations of being drunk so it can be easier to hide under the duvet.

 

dystonia text box

DRD text

When my dystonia is on form my hands claw to resemble an evil witch, my body and arms twist to resemble a teapot and my voice goes from stutter to silent. It is not an attractive look.

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Dystonia 

I hate the condition but without it I doubt I would have started blogging, it has introduced me to some amazing people and gives me time to read.

Last year I met the wonderful Jennifer Gilmour, a domestic abuse advocate. She is making a big difference for others with her blog and book by stepping out of the shadows and saying this is me and this is my story. Maybe I can do similar with my wobbly twisted life – if it helps one person my job is done.

Jenn and me

Jennifer Gilmour and me

Love

More info on dystonia can be found here

Duvet Dwellers Books Name Change and Other News.

For those who have followed this blog for a while you may have noticed a change. With the arrival of Flamingo Paperie cards I have decided to evolve; same blog with the main focus being on my love of books but I will add a smattering of posts about life with dystonia and of course, my love of cards. It is now called From Under the Duvet – Books, Cards and a Wobbly Life. The web address will also change when I figure out how to transfer my domain without spending a fortune and will be fromundertheduvet.co.uk

Dystonia is the main reason I spend more time dwelling under the duvet reading than I should so without it this blog would never have started. Dystonia is a common neurological disorder yet it is hardly spoken about leading to under diagnosis, misdiagnosis and loneliness for those with the condition. Awareness is key to funding support and research so I want to do my bit to help. I was diagnosed with my rare form of dystonia – DRD dopa responsive dystonia – after I stumbled on a blog showing a video of a man with the same symptoms as me. Blogs can make a difference and if this helps one person, I will be happy.

Cards for Christmas

It is getting closer to Christmas so those wishing to buy any cards, gift wrap or accessories from Cards From Under the Duvet the last date for delivery before Christmas is 17th December. Delivery is free until 31st December and a donation from all sales will be made to The Dystonia Society.

Giveaway Winner

The winner of The Christmas Lights by Karen Swan is Lil_Mixie on Instragram.

Congratulations!

I hope you will continue to follow me on my new venture and make 2019 a good one.

Happy Reading!

Love

Hello December – Christmas, News, Offers, and Charity

Hello December! I love December especially the first day of the month; it time to open advent calendars — have you got yours yet? If not there are some lovely none chocolate options here. It is also the day to put the tree up and decorate. I always wake up with an excited feeling.

Now is the time for writing Christmas cards. Flamingo Paperie has many to choose from single ones and packs. This is one of my favourites.

Donkey card

Donkey in the Snow

And now they have released some new products to make people smile

New Releases

Pop up cards

Peek Show cards

These are special cards based on the Victorian Peep shows, they look wonderful and as soon as I get one I will show you but why not take a peek here?

Cards for Charity

The Flamingo Paperie Christmas cards raise money for the The Phoenix International Charity which is supporting Together for Short Lives, Macmillan Cancer Support and Alzheimer’s Society but this year I am also fundraising for Dystonia Society UK. This charity works hard to support people with the neurological condition, dystonia. 10% of sales made via cardsfromundertheduvet.co.uk over the festive season (ends 1st to 31st Dec) will be donated. This covers all products not just the Christmas stock. So why not have a browse and make a small charity smile?

Which brings me to tell you about the special offers.

Offers

Free postage

Postage is currently free no matter how small an order is which is ideal for last minute gift wrap or cards.  If you need a game for the dinner table, why not grab a chatterbox? Or if you need to keep guests young and old calm and busy a metre high colouring poster is perfect to harness the relaxation of colouring.

The Customer Club is now  open

Join the customer club today and you will receive updates on new products, special offers and free gifts.

For any orders 17th December is the last date for the delivery in time for Christmas.

Finally, here is Flo the Flamingo. Who needs an elf on a shelf when you have to get up to mischief. Follow her adventures on our Instagram page with #Flo_the_Flamingo

Introducing Flo the Flamingo

Time to get out of the duvet and help decorate the Christmas tree.

Time for the Christmas tree

Merry Christmas!

Love

Meet the Author – Tom Seaman

tom-seaman-headshotAbout Tom Seaman

Tom Seaman earned his Bachelors Degree in Elementary Education and Psychology in 1994. After college he pursued private business ventures in the health education field. In 2001, he returned to school to pursue a Masters Degree in Counseling, during which time he developed a painful neurological movement disorder called dystonia. After living many years with debilitating chronic pain and emotional trauma, Tom eventually learned various techniques for better managing his symptoms. In 2012, he became certified as a life/health coach and currently owns a coaching/consulting practice where he helps people work through various life challenges. In 2015, Tom authored and published his book, Diagnosis Dystonia: Navigating the Journey, which has received rave reviews. It has also been recognized by the Michael J. Fox Foundation as one of their suggested resources. In his spare time, Tom writes his own blog and guest blogs, as well as articles for online publications such as The Mighty and Patient Worthy, to educate and raise awareness about dystonia and other chronic health conditions. He is also a support group leader for the Dystonia Medical Research Foundation, serving as co-administrator for their online dystonia support forum. To learn more about Tom and get a copy of his book, as well as links to his articles and videos, please visit www.diagnosisdystonia.com. For information about his life/health coaching services, please visit www.balanceyourlifecoaching.com. Follow him on Twitter @dystoniabook1.

How did you become an author? How I became an author is an unexpected story of many twists and turns. Unlike most people I know who say they want to write a book, it never even dawned on me until a major health issue significantly altered the course of my life. Writing became a form of personal therapy and healing, which then turned into educational and inspirational material for others.

Up until the age of 30, I was enthusiastically enjoying my life when all of a sudden I began to have health problems. A little pain and stiffness in my neck gave way to unrelenting muscle contractions and pain unlike anything I had ever experienced, and it just kept getting worse. After many blank stares at my distorted body from doctors who had no idea what was wrong, I eventually learned that I had a neurological movement disorder called dystonia. In my case it affects my neck, which is called cervical dystonia.

It began in 2001 when I returned to school to obtain my Masters Degree in Counseling after seven years in private business. Due to the severity of my growing dystonia symptoms, I was unable to complete my degree. For the most part, I was completely disabled. I also gained 150 pounds over the course of several years due to my sedentary lifestyle from severe chronic pain. Needless to say, dystonia turned my world upside down, altering the course of my life in ways I never imagined possible.

After numerous unsuccessful treatments and years of physical and mental suffering, I took the bull by the horns and dedicated myself to learning and applying a variety of symptom management techniques that greatly improved my quality of life. In addition to better managing my dystonia symptoms, I lost the 150 pounds I gained. Life as an obese person after previously being a fit, competitive athlete is a book of its own yet to be written.

In 2012 I became certified as a life/health coach, but I was struggling to get my business going. I was still trying to find my bearings from the way dystonia so dramatically altered my life. I felt lost and was starting to wonder about the meaning and purpose of my life. I needed something to get me out of the fog. As crazy as it sounds, one day something inside me said, “write.” The voice was loud and clear. It was almost like a command. I immediately put pen to paper.

As I began writing, I felt more liberated and clear headed. After addressing the most pressing issues, I felt compelled to keep writing and I knew exactly what it had to be about: dystonia. Not only to better understand how to live more effectively with a chronic health condition, but to share with others the things I learned along the way to help them live as high a quality of life as possible.

diagnosis-dystonia-3d-coverTwo years later I published my book, Diagnosis Dystonia: Navigating the Journey. This combination autobiography, self help, education book provides treatment options, coping strategies, skills for daily living, and tools for dealing with the physical and mental challenges of life with a chronic health condition. Serving as a roadmap, this resource covers nearly every physical, emotional, and psychological aspect of living with a chronic condition. The information it contains actually transcends dystonia, making it applicable to any life challenge, health or otherwise.

Although I always enjoyed writing, I never thought I would write a book. It just began to flow as soon as my fingers touched the keys. I actually believe that the book found me, and at the perfect time, as have subsequent writings. Writing gives me a sense of meaning and purpose, especially when someone tells me that something I wrote changed their life. Now that’s pretty cool!!

What is dystonia and where can I learn more? Dystonia is a neurological movement disorder characterized by uncontrollable, involuntary muscle spasms  and contractions, causing repetitive movements, twitching, twisting, and/or abnormal postures. Muscle contractions can be sustained or intermittent and sometimes include a tremor. Dystonia can affect any part of the body, causing varying degrees of disability and pain from mild to severe. For more information, please visit the Dystonia Medical Research Foundation’s website: www.dystonia-foundation.org

What is your favourite book? The Road Less Travelled by M. Scott Peck

Who is your favourite author? Wayne Dyer

Is your writing influenced by the books you have read? In a way I suppose so. I mostly read self help, non-fiction, inspirational, and factual stories, as well as education/reference material, and my book, articles, and blogs are similar in content. However, with my background in social sciences, my main interest is capturing the human element that lies within all facets of life.

Where is your favourite place to read or write? I love to read and write on my back porch in the late afternoon and early evening when the sun is going down and the shadows on the ground are getting longer.

When did you begin writing and how did being published come about?  Ever since I was a little boy I was an avid reader and also wrote a lot of poetry. Although I disliked Language Arts classes in school, it was always my best subject. My book started as a journal for my own personal healing from a life changing health condition. It then expanded into a labor of love in an effort to help others.

If you have a genre you write, how did you begin writing in this style? Most of my writing stems from the chronic health condition I live with, but I also dabble in poetry and free writing that is unrelated.

Has being chronically ill influenced your writing and changed its direction? Most definitely! Each day I feel I gain new perspectives about life with challenges, whether they be my own or others. This provides me with greater understanding and empathy, which impacts the content and flow of my writing. I am always searching for greater connection with people beyond just their illness, as this is just one aspect of their interesting lives.

To learn more about me and my book, as well as my work as a life/health coach, please visit my websites: www.diagnosisdystonia.com and www.balanceyourlifecoaching.com

Book Reviews: Diagnosis Dystonia: Navigating the Journey

“This should be THE resource book for dystonia for many years to come!”

“Must read for dystonia sufferers, doctors, friends, and family.”

“This amazing book exceeds anything out there.”

“An outstanding resource on dystonia.”

“Thank you for your passionate, positive, practical book!”

“Tom has written the definitive book on dystonia.”

“If you have dystonia this is the book for you!”

“Without this book I may have lost my mind!”

“A brilliantly written, honest, and open book.”

“Tom’s book is the best! If you haven’t read it, get it! Read it! Share it!”

 

 

Save

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The Twists and Turns of Dystonia

September is Dystonia Awareness month so it seems fitting to review  3 books about the condition. This post originally appeared on blog Books, Tea and Snuggly Socks

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 Jean Sharon Abbott 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

From Love to the magical world of childhood

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February, the month of love was recognised by the ‘self care’ theme, after all in the world of chronic illness looking after yourself is essential.  The theme was open to include general self-care and finding more about your condition so a range of books were discussed including Diagnosis Dystonia and The Drama Free Way of Life.

 C.S Lewis quote children's books

 

We revisited childhood in March, in honour of colourful and delightful  World Book Day where children and adults dress up as their favourite characters to celebrate the joy of books.   The book could have been your favourite dog-eared book you grabbed repeatedly of the shelf (or kept close under your pillow) or a book you always wanted to read. There is a wealth of enchanting books to choose from, including the classics from Roald Dahl, Frances Hodgson Burnett and J K Rowling.  Children’s stories can be magical, inspiring or heartbreaking such as one my old favourites ‘Goodnight, Mr Tom’. There are so many, it was difficult to decide because a title is mentioned and  memories of childhood reading flood back – favourite reading places, library or book shop visits or  friends. Not only do you relive the story and catch up with long forgotten characters, you also capture snatches of time as memories of the when you last read the book resurface. It is a theme that should be have a sequel or two.

 This theme should also come with a warning – your to-read list grows exponentially as you brainstorm books you have read and want to read again
Still looking back in time

 

From revisiting old favourites, April’s theme is all about reading someone else’s history in the form memoirs and biographies. Any person can be chosen, from any period of time. Maybe it is someone you admire, intrigued by or they lived through an experience you either relate to or want to know more about, the choice is yours.  This is a genre I do not normally read so I am looking forward to giving it a go as well as catching up on everyone else’s finds.

What will be on your next book be?

Happy reading until next time.

 Future Book Club Dates
April – Biography or Memoir – 29th April
May – A book with a colour in the title – 27th May
June – A book you already own – 24th June
To join our book club click here for a warm welcome