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

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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