Tag: spasm

Posted in Archive, november

Facial Spasms

Posted on by dystoniaandme

Last night I got a bit of a shock. The left side of my bottom lip went into spasm, and the whole of the left side of my face looked and felt odd. Now I received treatment for my Oromandibular Dystonia on the 18th September, so I was not expecting this to happen so soon, as Botox injections last for around 12 weeks, and at the moment I am on week 8.

When I woke up this morning, my face felt and looked normal. Which gave me some relief. However after eating my breakfast I can already see and feel the spasm tugging at my bottom lip. It is in an extremely strange sensation. The only way I can describe it, is to imagine you have bad cramp in your lip and at the same time someone has a piece of string, which they have attached to your lip, and they pulling down on it.

On the positive side of things the spasm was nowhere near as extreme as it was before. I am hoping that as I have noticed the spasm happening at an early stage, I will be able to be referred for treatment and receive it before the spasms get to an extreme point.

 

Posted in Archive, november

The Weather and My Dystonia

Posted on by dystoniaandme

So it is getting to the time of year I love! The trees are turning beautiful colours, the air is getting cooler which always makes me start hoping for snow, and the shops start displaying amazing Christmas decorations. Just going out and about at this time of year puts a giant smile on my face. However my Dystonia alien has decided that he hates the cold! Every time we venture out into the cold, my Dystonia alien acts up, causing my right arm to spasm and shake violently.

I am therefore putting my foot down. The Dystonia alien may have control of the majority of my body but it shall not take control over my favourite time of year! I want to be able to go out in the snow! When out shopping today with my mum, we invested in some warm/fluffy mittens, and a lovely warm blanket to cover me up with when I am out in my wheelchair. My theory is if I wear loads of layers and cover myself up as much as possible then my body should hopefully not go into spasm.

It shall be another experiment, which hopefully turn out to be just as positive as the last.

 

Posted in Archive, november

Occupational Therapist :-)

Posted on by dystoniaandme

Well after arguing with countless people down the phone and battling with the NHS I am finally getting some help. Yesterday I had a visit from a rather lovely Occupational Therapist, who had seen Dystonia patients before. I was quiet happy she had chosen to come yesterday as  the dystonia alien had decided that I was not allowed to walk,move my fingers or see. She therefore witnessed my leg spasms cause me to fall, then my struggle to get up, she saw how often I would go blind, and how painful the whole thing was. This meant she could see just how much Dystonia affected my life and how much I struggled with doing the most basic things for myself.

She was extremely understanding and was quick to put forwards ideas that would help me in the house and with getting out the house. It was nice to have someone listen to me, who understood my condition, and really wanted to help make my life a little bit easier.

Posted in Archive, november

On Top Of The World

Posted on by dystoniaandme

Today I have woken up and found myself to be in a great mood, with a huge grin spread across my face! The reason for this is that over the last few weeks I have slowly accomplished more and more. I am feeling pretty proud of myself! When my Dystonia started affecting more of my body, I found myself focusing on all the things I wouldn’t be able to do/ would struggle to do. Yet now as I look back over the last few months, I find that I have managed to do so much more than I ever thought I would be able to.

Though some of these accomplishments may seem small, such as learning to write with my left hand, for me these are huge steps forwards, that fill me with hope. I can now fill out forms with my left hand, I can go out in public and not worry about what people think of me and I can go shopping and try on clothes!!! All these little things reassure me that I can lead a normal life and enjoy it, despite my dystonia. At the end of the day, my dystonia is part of me, but it does not define me. It is my choices and actions that do.

Posted in Archive, October

Determination!

Posted on by dystoniaandme

So I know Dystonia is thought of by the medical society as incurable but I have to disagree. Personally I think that the medical society know so little about Dystonia, that to say it is incurable is madness. Just because they have not found a magic treatment plan or pill that works for everyone does not mean it cannot be cured. Why accept such such a depressing prognosis? Why not stand up and say NO! I am going to beat this thing and prove you all wrong!!

Life has thrown a hell of a lot at me and so far I have beaten every single thing. I plan on beating Dystonia too. In 2009, I suffered from Complex Regional Pain Syndrome and I was hospitalised for six long months, yet I didn’t let it win! It took about 9 months but I beat it! I had to teach myself to walk again, I had to retain my brain to understand that things touching my leg weren’t actually harming me. It was agonising but I beat it!

If I can beat CRPS then I can beat Dystonia. The doctors all admit that CRPS and Dystonia are very similar, and  treatment for them both is again very similar. So in my eyes if I can beat one, then I can beat both! Before all of this happened in July, I was so happy, I was training to be a midwife and loving it! I refuse to let Dystonia stop me!

So little Dystonia alien, if you can hear me, I would be very afraid! You have had your fun and now it is time for you to leave! I have had enough of you controlling my body! I am going to take back my body and I am going to go back to my studies!

Posted in October

Dystonia Alien Plays Games

Posted on by dystoniaandme

Tonight the dystonia alien decided to show me what else it could do with my hand. Normally when my spasms last for a long period of time we end up trying to force them to release. However this particular spasm seemed to be determined to stay for as long as it wanted. Every-time we thought we had managed to release it, it decided to return. In the end we gave up, and decided to let the dystonia alien have its fun. The theory was that if we let it run its course, then perhaps the time in-between the spasm finishing and then returning would be longer. As I am writing this, it is still in spasm. If the muscles and tendons in my hand had the ability to scream, right now they would be.

The image shows the Dystonia aliens latest spasm game…

Posted in Archive, October

The little Achievements

Posted on by dystoniaandme

Yesterday I decided I would attempt to play my flute. I knew it would be a long shot considering I cannot pull a face without my face going to spasm, and I cannot hold things in my right hand without it going into a spasm. However I had read an article about music helping some people with dystonia and I figured there would be no harm in trying. After carefully practising holding the flute so that I was not supporting it at all with my right hand I gave it ago.

I started off by trying to play my scales. I soon realised that as long as I avoided playing notes in the higher register then my face took longer to spasm. I presume I must alter slightly my lip positions when I played the higher notes and this must be what caused the spasm. I carried on playing and my hand only went into spasm when I played two of the lower notes. I figure that I must have put some pressure on my right hand with these two notes, so I made a mental note to avoid playing those two. I then moved onto playing some basic pieces, avoiding the notes that I knew would set a spasm off immediately. In the end I was managing to play about a page before my face went into a spasm.

I am so happy! I never thought I would be able to play my flute again! It does not matter that I can only play certain notes, it is better than not being able to play at all.  I am going to try and practise my flute every day in the hope that I may eventually be able to play more and more before I spasm. I do not know if it will work but it is worth a try!!!

🙂