Tag: Neurological Disorders

Posted in Archive, november

Today’s Thoughts

Posted on by dystoniaandme

My jaw is still in spasm, which is really rather painful. However on the positive side of things, my medication, has really helped and my spasms in my right arm and leg have not been that bad these last few days. The pain in jaw can get rather intense and this tends to cause me to have a Non Epileptic Seizure. I am getting better at identifying when I am going to have a seizure. This means that I am able to inform someone, like my mother, seconds beforehand. This is a huge step and a big positive, as it means that whoever is with me, can try to prevent me from injuring myself during in a seizure. I am hoping that I will hear from the consultant soon, so I can get treatment for my jaw, which in turn should hopefully mean that my seizures will disappear again.

The path my life has taken, at this moment in time, is not one I would have chosen for myself. You would have to be fairly crazy to want to have Dystonia. However I accept that for now Dystonia is part of me, and I cannot magically make it disappear. Dystonia is one of those conditions that on some days is fine and does not play up that much, on other days, it is a gigantic pain.

I am so thankful to my family, friends, and all the many people who contact me to support me. They are all amazing and help me stay strong on my bad days. They help me laugh my way through the spasms, and make sure I don’t hurt myself to much during my seizures. I really don’t know how I would have coped with Dystonia without all these wonderful people in my life!

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

Experiment!

Posted on by dystoniaandme

Yesterday I went out to the cinema to see the new James Bond film. I was really excited, yet filled with nerves. The reason for the nerves was that back in August I was diagnosed with Non Epileptic Attack Disorder, my seizures seemed to be triggered by extreme pain, lights being shone directly in to my eyes and flashing lights. Despite the fact that I have not had a seizure in over 5 weeks, I was still worried, after all with the amount of explosions that there are in James Bond films, there was bound to be some flashing lights.

So you can imagine how ecstatic I was, when we got to the end of the film without having any seizures. The flashing lights had merely set my dystonia off, which left me blind for a few minutes. The was yet another huge step forward for me, and has filled me with confidence. It was a very successfully and enjoyable experiment 🙂

 

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, november

My big 4.

Posted on by dystoniaandme

This morning I was feeling pretty down. All I could think was why me? After everything I have already gone through in my life, how was this fair? After feeling depressed for a few hours I started to think about the way I was looking at my life. At that moment in time I was looking at it all wrong. I was allowing my Dystonia to get on top of me, and I was looking at life from the wrong the point of view.

Instead of filling my head with negative thoughts, I started to focus on the positives. These are my 4 big positives.

1) If I didn’t have Dystonia then I wouldn’t have raised over £700 for the Dystonia society, a charity that provides fantastic support for sufferers.

2) Through this, I have brought awareness of Dystonia, to not only members of the public but also to members of the medical society who had not heard of Dystonia or seen a Dystonia patient before.

3) If I did not have dystonia, then I would not have had created this blog. This blog has not only raised awareness but has also put me in contact with some amazing people!

4) Dystonia has given me strength! The strength to go out in public in my wheelchair and not care what people think. The strength to stand up to the medical society. The strength to speak out and raise awareness! The strength to carry on fighting even when things are looking bleak. The strength and the determination to show the world what I can do. The strength to keep on believing that one day there will be a cure.

 

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

Musings on my upcoming treatment

Posted on by dystoniaandme

Back in 2009 I was admitted into my local hospital with Complex Regional Pain Syndrome in my right leg. I stayed in hospital for a total of six months and still suffered with the condition for a few months after that. The condition meant that despite the fact that I could see my leg so I knew it was there, I didn’t feel like I was connected to it. It would change temperature, colour and sensations. I could not bear even the touch of clothes, and was not able to move it. As a result I had intensive physiotherapy and Hydrotherapy, which thankfully worked a treat for me. I had to learn to move my toes/leg/walk again and retrain my brain to understand that the floor or clothes etc. were not actually harming me.

Due to what I went through with the Complex Regional Pain Syndrome, I can understand how/why my Neurologist has recommend an intensive physiotherapy and rehabilitation treatment plan. I completely get how it will hopefully (fingers crossed) help with my symptoms in my arm and leg. What I am curious about is how it will help with my facial spasms and eye spasms!

When I had intensive therapy before, I basically had to bombard my nerves constantly. I was given exercises to do every hour (in the day) if the physiotherapists were not with me. This meant standing and putting my foot on the floor or running brushes up and down my leg etc. They were all extremely painful but it was by forcing myself to do this constantly that my nerves resumed normal activities. I am expecting that my upcoming treatment will be similar, I am presuming that I shall be made to do movements/activities that will bring on a spasm repeatedly in an attempt to retrain my brain. To me this makes sense, however with my facial spasms they tend to be pretty random, though sometimes I feel this has something to do with eating. Again my eye spasms are random and vary between the length of time they last, with the shortest being seconds long and the longest being 15 hours.

I know that I cannot get any answers to my musings until I am there and taking part in the treatment programme, but I am so curious! The whole disorder intrigues me so much. The human body is such an incredible thing, and although we know so much about it, when it comes to the brain we know very little. New things are discovered all the time, and each new discovery allows for more research to be done. We learn more and more each day. I may not even get the answers during my treatment. One small thing could trigger another. I can’t wait to see what my treatment plans does for my dystonia! Its a big unknown but hopefully one with a positive outcome.