Dancing with Dystonia

After much soul searching, I have decided to add this page to my blog to introduce you to Dystonia – my ‘dance partner’ for the last two years!

As so many people have never heard of this condition I thought that I would share a little of my journey with you in the hope that someone…somewhere…will know – or will have heard of – a natural and non-invasive treatment for this incurable condition.

• • • • • • •

My Dance with Dystonia began two years ago while I was working in Austria as operations manager for a well known travel company.

My job required a great deal of hand writing and during the first week, I noticed that I was beginning to experience problems holding my pen. It kept slipping out of my hand and across the page, requiring me to re-write many pages of work.

As this began to occur more frequently, I became very self-conscious as I couldn’t understand what was happening – or what I could do about it. 

My hands continued to misbehave for the next couple of weeks before beginning to ache like crazy. I would awake in the mornings with both hands curled into a ‘claw like’ grip and it would take best part of an hour for them to uncurl.

I was unable to lift the kettle to make a cup of tea, get myself dressed – or even wash my hair. Basic manual tasks were almost impossible until I regained some sort of control over my hands and the reflex spasms that were causing me to lose my grip on simple objects.

During the day, my hands would begin to shake and I would have to walk away from my desk and do another task before my colleagues began to notice the spasms and start to question my ability to do the job.

I was becoming very distressed, particularly as creative writing is my passion and my growing inability to write more than a few words was robbing me of one of my greatest pleasures and joys in life.

Obviously something wasn’t right…but as the symptoms didn’t fit within my limited range of medical knowledge…I just tried to ignore them in the hope that they would go away.

Sadly that wasn’t to be and over the next three months – as the discomfort and pain became steadily worse – I decided to return to the UK to be referred to a neurologist.

I was finally diagnosed with focal Dystonia of the hand (writer’s cramp) in November 2009 – a condition for which there is no cure and only limited options for treatment – most of which are pretty ineffective.

It was the first time I had heard the term, even though my younger brother had been suffering from Cervical Torticollis for the previous five years – a condition which causes his head to be permanently twisted to one side.

Not once had I heard him refer to the condition as Dystonia, so it came as a real shock to find that we were both suffering from the same condition.

My brother may wish to share his story with you at some point and I will encourage him to do so. However, in respect of his privacy, all I will say is that he has been in agony for many years and pharmaceutical treatment has so far proved ineffective.

It breaks my heart to see my brother suffer in this way and even though he tries to stay upbeat I can sense him smiling through the pain. I have so much love and admiration for his bravery in agreeing to be a ‘guinea pig’ for the medical establishment by giving his consent to try out new drug treatments for a condition they still know very little about.

Sadly, none of these treatments – including the most common form of treatment – Botox injections – have had any beneficial effects and he has now drawn the line at subjecting himself to DBSDeep Brain Stimulation – which is offered to sufferers as a last resort due to risks involved in the procedure.

As I strongly believe that the body has the ability to heal itself, I have refused all offers of the same type of treatment as my brother, as it is my belief that a natural cure – or treatment – for this distressing and painful condition will be found in the near future.

It is my Mission as part of my 365 Days of Celebration – to raise awareness of Dystonia through this blog.

• • • • • • •

So what exactly is Dystonia?

Dystonia is a malfunction of the part of the brain (basal ganglia) that controls different muscle groups. It is a movement disorder that causes the muscles to contract and spasm involuntarily.

The neurological mechanism that makes muscles relax when they are not in use does not function properly. Opposing muscles often contract simultaneously as if they are ‘competing’ for control of a body part.

These involuntary muscle contractions force the body into repetitive and often twisting movements as well as awkward, irregular postures. There are approximately 13 forms of Dystonia, and dozens of diseases and conditions include Dystonia as a major symptom.

There is also thought to be a link with Parkinson’s which originates in the same part of the brain (basal ganglia).

Dystonia is known to be a side effect of Parkinson’s and to my knowledge, it has only been recently established that someone presenting with Dystonia can also have symptoms of Parkinson’s (such as the tremors in my hands which are not normally associated with Dystonia).

Michael J Fox (who also suffers from Parkinson’s) talks about his facial Dystonia in an interview on YouTube (please see below for video link)

Unbelievably, there are 70,000 suffers of Dystonia in the UK alone – the same number as clinically obese people – and yet very few people have ever heard of this chronic condition that affects so many lives.

In North America there are known to be 550,000 people diagnosed with some form of Dystonia; although it is believed that the real figure is more likely to be in the region of One Million.

That is a huge number of people to be suffering from a condition for which there is no effective treatment – or hope of a cure – from a medical establishment that really knows very little about the condition. Funding is very limited thereby affecting the amount of research taking place.

The main reason for this shortage of funding is a lack of awareness and it is my dearest wish that during my special celebratory year…that I will be able to play a small part – on behalf of my brother, myself, and the millions of other sufferers worldwide – to raise this awareness and to fulfill my dream of moving us all towards a Dystonia Free life.

THANK YOU – for reading this far – and for giving me the opportunity to share some of my story with you.

I would love to hear from you if you know of any effective natural therapies – or treatments –  for this condition…or of any pioneering work being done in this field.  

Further information about Dystonia can be found via the following links:-

http://dystoniasupport.blogspot.com/

http://www.dystonia-foundation.org/pages/more_info/54.php

http://www.dystonia-foundation.org/pages/more_info/54.php

http://www.dystonia-foundation.org/pages/what_is_dystonia_/26.php

http://emedicine.medscape.com/article/1243022-overview

http://www.dystonia.org.uk/

33 responses

6 02 2011
Dancing with Dystonia « 1961 Girl

[…] Dancing with Dystonia […]

6 02 2011
mrsled

Well, I would never have believed that life could be so cruel. Your writing is so good, so I wonder does it affect your typing on the keyboard or do you use your voice.
I was going to say ‘ I am so sorry’ but I retract that. I absolutely 100% admire what you are doing. I am sorry but my admiration is even greater.
There is a company that make fingerless gloves that use some sort of ‘waves’ to help such conditions as carpel wrists. I will sort out the name if you are interested and if this condition is similar.
What a brave lady! and she has a very brave brother !

6 02 2011
1961 Girl

What a lovely message. Thank you for not saying ‘sorry’ as the last thing I feel is ‘sorry’ for myself. Compassionate towards others – yes – but not ‘sorry’ as I believe that everything happens for a reason and if we listen closely, we will be shown the reason for this. In my case, I believe that the universe decided that in order to truly understand my brother and his condition, that I needed to experience some of the same! And by doing so, to use this understanding and my energy to get a message ‘out there’ and begin to raise some awareness. I do believe that a natural cure/treatment will be found and in order to discover it, I need to connect with as many people as possible.
I’ve not heard of the company with the fingerless gloves – if you would be kind enough to post the details, that would be great and I will contact them to find out more. Funnily enough, I did suffer from carpel tunnel after my daughter was born and luckily this righted itself over time.
The condition does affect my typing at the times when my fingers refuse to straighten…or my hands begin to shake. I usually manage to work through this, and it is good to know that if it were to get worse, I could always install the voice recognition software. It would take quite a lot to shut me up once I start…as this comment is beginning to prove!
Take care and thanks again for your support. Juls x

6 02 2011
Jean Paul

Golly Juls, one would never have known it! Thanks for being so brave and open (I love that about you).

Well, you have an opportunity, don’t you! Get on the phone to Joel and ask him to read this blog, then sharpen your pencil (hmmm, keyboard) and start composing your story, your 30 second pitch, etc., and get up on that platform girl!

See you there.

6 02 2011
1961 Girl

Blimey…I never thought of that…thanks JP! Can you put in a word with Joel (as you have his ear!), or shall I email Heidi with the link?

What a great thought…you are a star! 🙂

6 02 2011
writerwoman61

Thanks for this info, Juls…

My dad has Parkinson’s disease, and before he was diagnosed (and medicated), his handwriting had become tiny and nearly illegible because he couldn’t control movement in his writing hand. I’m guessing this was also a form of dystonia.

I’m hoping a cure for both of these devastating diseases is found soon…

Wendy

6 02 2011
1961 Girl

Hi Wendy.

I’m so sorry to hear about your dad. I do hope that his medication is having some beneficial effect and has helped to ease some of his symptoms. From what you have described, it does sound as though your dad also has focal Dystonia in his hand.

I am just grateful that I am still able to type as I don’t know what I would have done without my ability to write in some way. I suppose the next step would have been ‘voice recognition’ software, so there is always another to road to get you to Rome…or WordPress!

I do hope it was the right choice to talk about this publicly. I feel so passionate about doing whatever I can to raise awareness. And if blogging is going to be the way…then so be it!

Let’s keep the faith that a cure is found soon.
Juls.

6 02 2011
Redneckprincess

Hugs to you my friend, thank you for the information you have given, you are right, I hadn’t heard of Dystonia before now, and what a great video with Micheal J….he is such an amazing guy, I have always been in awe of him, and proud that he is from my part of the world 🙂 Keep up the great writing, I love reading you 🙂

6 02 2011
Andrea

Wow Julie, what a story. Thanks for sharing. And yes Dystonia is a new one on me too. But Jean Paul is right. You have an opportunity here if no-one else is talking about it…

6 02 2011
1961 Girl

Hi Andrea.

Thanks for stopping by and checking out my blog. The new page is rather ‘wordy’, but I couldn’t figure out how to get the information out there by making it any shorter. Well done for taking the time to plough through it all. I will also being giving some real thought to JP’s suggestions of talking to Joel…
…will you be there next month?
Best wishes,
Juls 🙂

6 02 2011
eof737

You followed your heart in bringing this to the fore… I am proud of you; you brave soul. As I said earlier, if anything crosses my path that would offer comfort or insight, I will share it with you.
Thank you for including us in this conversation… and a very important one at that. 🙂
Blessings and healing light to you and all,
Eliz

6 02 2011
1961 Girl

Bless you Eliz for your love and support…and the healing light x
I have followed my heart by bringing this to the fore and it has been the first step to focusing on raising the awareness of this condition. Obviously I won’t keep harping on about it as my blog is all about celebrating life. It just felt right to take my first tentative steps amongst a good of people whom I consider to be my friends.
Thank you 🙂

6 02 2011
Knight

Thank you for sharing this with us.
You are very brave and I know you will continue to be an inspiration and help raise awareness. It is very important to understand as it is a little understood condition.
Our prayers and support are with you.

6 02 2011
1961 Girl

I am learning more about the condition every day and I really hope that through my experiences, I am able to raise awareness of this little known condition. Thank you for your support.

7 02 2011
Esther

Calling your problem “writers cramp” seems to be grossly understating what you put up with. You are right…I haven’t heard of it before. I think the reason is, people who have medical conditions, or handicaps, tend to stay home. I know I was losing my mobility and stayed home for almost 10 years before I got a wheelchair and actually started going out to eat with family once again. I am glad you decided to share with us. I will say a prayer for you and your brother. Good luck.

8 02 2011
1961 Girl

Thank you Esther…for your support…and for your prayers.

I can totally understand the desire to hide away from the rest of the world when people are faced with accepting their disability. Sadly, some remain hidden away and miss out on many of the joys being part of the outside world can bring. Yes, it takes courage to put on a smile and face the world and I’m sure that your life became more enjoyable when you were able to get out and spend precious time with your loved ones.

Juls

7 02 2011
Piglet in Portugal

Hi Juls – I am sure there are many so people out there who need to know about this. Thank you for bringing it to our attention….for me it could explain a lot of things 🙂 I can’t talk about now…other than up to the age of 24yrs old I studied and played the classical guitar – it was my passion. I thought my heart was going to break when I lost the feeling in my thumb and developed numbness in my fingers and I could no longer play.
I eventually sold my beloved guitar when I was 50 – I cried again. Boy what a whimp. You are so brave, a great writer and I love your blog.

I have tweeted this post (or whatever the term is) and asked others to retweet. If everyone who reads this took just a moment to press the Tweet and Retweet button…it would be great. 🙂
PiP

Come on folks we want a dawn chorus!!!

8 02 2011
1961 Girl

Hi Carole.
I’m so sorry to hear that you had to give up your beloved guitar…it must have been like saying goodbye to an old friend.
Thank you so much for helping to promote awareness. You are a sweetheart 🙂

9 02 2011
40 Days and 40 Nights « 1961 Girl

[…] Dancing with Dystonia […]

9 02 2011
ghizela rowe

Is there any connection with dopamine levels?

11 02 2011
1961 Girl

Hi Ghizela,

I’m not familiar with the effects of dopamine levels. Thank you for the suggestion…I will do some more research on this. BEst wishes, Juls 🙂

9 02 2011
Rosa

I’m so glad that you have decided to share your battle with Dystonia on your blog! I have never heard of this before and you are right- awareness is a crucial part of the equation. My thoughts are with you and your brother and I hope that a natural and permanent cure is in your futures!!!

9 02 2011
Marcia

Poor Juls, how ironic for such a great writer to have trouble with the very things she needs the most, her hands! Like everybody else I have to say I’ve never heard of the condition until now but each of us will be spreading the word I’m sure, well done to PiP for tweeting it too.
I really hope something can be done but at the very least with the immediacy of the internet you are already making progress in raising awareness. May your brother be your inspiration and likewise may you be his. Best wishes x

11 02 2011
Kay Newton

Juls – You are a great inspiration to us all.
I am not sure why life does this to us yet the more we overcome the greater we become. The bigger the hurt, the more we appreciate and when we have things taken away, the more we give back.
You are writing for a reason, whatever that may be and we are also growing with you – despite the pain keep at it gal!

11 02 2011
1961 Girl

Thank you Kay – your kind words mean so much to me.

I believe that everything happens for a reason; it’s just that the reason isn’t always clear at the time. I still don’t really know what is driving me to write and to stick with this commitment of posting every day. I may begin to cut down on the frequency of my posts unless I can find some way to manage my time better. I am just playing it by ear for now.

I totally agree that we can appreciate things so much more if they are taken away…which I why I always remind myself to focus on appreciating all the great things and wonderful people I have in my life. Thanks for stopping by to say ‘hello’ and to leave your lovely message. Juls 🙂

13 02 2011
Sheila

Having seen someone with dystonia my heart goes out to you Julia . Sadly he also has severe bipolar disorder and drugs for treating this caused the dystonia. Ironically when the bipolar order is at its worst the dystonia is better.

At one time the consultant treating him for dystonia suggested acupunture to relax the muscles but no doctor practising acupuncture was prepared to treat him. Could it help you????? Good luck Sheila

13 02 2011
1961 Girl

Hi Shelia. I’ve not heard of drugs causing Dystonia before…this is a very interesting link – thank you. I will do more research into this. I am very fortunate in as much that my condition is mild compared to some poor souls.

My brother had a course of acupuncture to see if this would help him…but sadly not. I guess it is a case of trying different treatments until we each find one that works for us. Thank you so much for your comment and for your support. Juls :-0

14 02 2011
wordangell

Thank you for this post, I have heard of dystonia before, we have tv programmes in the uk that highlight different health issues. Life gives us many burdens to cope with and issues to overcome and it is only when beautiful people share their difficulties that we can begin to understand. I have no answers for help or a cure but positive thinking. No matter what difficulties we have in life, I believe we have the strength to deal with. Not only that, in dealing with it we help others. My prayers and healing thoughts go to everyone who lives with dystonia or other issues. ( My niece has progeria) God bless you… think positive, think healthy. It all helps us understand, thank you. xxx

18 02 2011
Writing from the Heart « 1961 Girl

[…] Dancing with Dystonia […]

18 02 2011
carlaat

Thank you for sharing this information and increasing awareness. I enjoyed the Michael J. Fox clip. I wish I knew about a treatment right now, but you never know what you’ll come across in daily reading and living; I’ll keep my eyes and ears open! Best wishes and keep sharing your daily celebrations,
Carla

18 02 2011
Dystoniasupport

There is a lot of information here:

http://dystoniasupport.blogspot.com/

much of it you won’t find collected elsewhere – please link to me

19 02 2011
1961 Girl

Thank you so much for posting this information. I had searched for a blog such as yours and couldn’t find one…so this is great. I saw the TV programme, Embarrassing Bodies this evening and was impressed with the results with the hypnotherapist. I will post your blog address on my ‘Dancing with Dystonia’ page so others can find it. Best wishes and grateful thanks. Juls 🙂

23 02 2011
Dreamz Happen Quiltz

I had a DX of Torticollis and after about a year I did finaly manage to straighten my head .. but not before it damaged my C4-C5 vertabrae. Yes, that is what dystonia is. Physical therapy and constant manuvering worked for me but it’s not a sure cure. As you said there isn’t one. The Parkinsonism tremors and an iron deposit in the cerebelllum has led my neuro doc to DX Cerebellia Ataxia. Each difficult day remember to love and be loved is our ultimate goal…
You are loved by many, I can see that… BIG HUG
Julie

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