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Posted in April 2013, Archive

Dystonia Awareness Week!

Posted on by dystoniaandme

Dystonia Awareness Week is fast approaching, it runs from Saturday 4th May to Sunday 12th May. Last year my mum, step dad and I ran a 5k fun run up in London and raised over £700 for the Dystonia Society! However this year we had to rethink how we would raise awareness and funds for The Dystonia Society as now I am in a wheelchair the 5k fun run is out of the question.  After a quick search on The Dystonia Society website we decided that we would throw a tea party. There is also a slight competitive aspect to it, as everyone sends in the their tea party photos and The Dystonia Society judge the best.

I am also taking part in the ‘Go Blue Movement’. I am dying a section of my hair blue during awareness week to raise funds and awareness for Dystonia. The Go Blue Movement is an international movement, which started off in America! If you have not heard of it yet then I am sure over the next few days you shall hear more! You can easily take part in it by dying a section of your hair blue! If you do not want to use permanent dye, you can easily use a spray in, wash out dye!

If you would like to help me raise funds for The Dystonia Society then visit my just giving link! Every bit will make a huge difference for this small but amazing charity! http://www.justgiving.com/Rebecca-Moller1

 

Posted in April 2013, Archive

Medication side effects

Posted on by dystoniaandme

Normally I don’t really get any side effects to medication. With one of my medications, called Gabapentin, I find that for about 24 to 48 hours after upping the dosage I am a bit of hormonal wreck, but that soon calms down and I’m back to my normal self. So when I started taking Clonzepam I expected to have no side effects, or only minor ones.

Instead I have dealt with the joys of being fine one minute  and a paranoid, weeping, agitated wreck the next. The smallest thing can set me off, for example my step dad simply asked what I wanted for breakfast this morning and I broke down into tears, then this afternoon I found out that due to Fridays trip to the hospital I am not allowed to ride this week, cue more tears. Right at this moment in  time I am extremely agitated, if I was able to walk I would be out the front door, seeking a decent length stroll to calm down and get fresh air. Instead I am sitting telling myself over and over that it is just the medication making me feel like this and I will soon be fine…and then the paranoia hits again.

Due to how extreme these emotions are I spoke to me GP and expressed my concerns. He has suggested that I start taking Tramadol (a pain-killer/pain blocker) daily, so that my seizures will be triggered less which in turns means I wont have to take Clonzepam unless I really have to. This sounds like a good plan to me, so I shall try it out. I do not want to stop taking Clonzepam because I would like to see how beneficial it is, so I am just going to have to suck it up and learn to deal with the side effects.

Tomorrow is another day, which will hopefully be better and brighter,

Posted in April 2013, Archive

Bring It On!

Posted on by dystoniaandme

Yesterday afternoon I collapsed outside of my house and started having Non Epileptic seizures and Dystonic spasms. As I was not regaining consciousness I was rushed by ambulance (with blues and twos on) to my local hospital, where I was luckily treated by the lovely doctor who I had seen the last time I was there. The doctor remembered exactly who I was and even where the best place to take blood from me was! I was extremely impressed with how I was treated. I was unconscious for a couple of hours and have very little memory of the event.

Today I am rather sore, but I am also feeling inspired! My illness repeatedly puts me through hell and back, but its ok! I know that no matter what my little Dystonia alien throws at me, I will get through it. The image below depicts exactly how I am feeling.

Whilst Dystonia and Non Epileptic Attack Disorder are truly hideous conditions to have, I could be so much worse off. I could have cancer or another potentially life threatening disease! So I feel blessed that my condition merely limits me.

Through being ill I have had the privilege to talk to and meet some of the nicest people I have ever met. They all support me and give me strength! For example other bloggers and health activists; talking to them is a joy, as they can understand, advise and support me. Another great example are the amazing staff in the chemist by my doctors. I love going in there as I always get a warm welcome and have a quick chat, which puts me in a great mood.

I may suffer from a hideous condition, but I am so much more than just an ill person. I am a health activist, a fighter, I can be anything I want, and I can achieve anything I want. Just you wait and see!

 

Posted in April 2013, Archive

Life is a Lottery

Posted on by dystoniaandme

I love this quote, and for me it rings true, I may only be at the beginning of my storm but I am already a stronger person for it. It can be applied to anyone and everyone as we each go through our own ‘storms’ at different times in our lives. The struggles we experience, no matter how big or small they are, change us. They allow us to develop and change so that we are stronger, so that we can carry on with our heads held high, it gives us the knowledge that no matter what life throws at us we can and we will beat it every time.

In life people always ask themselves ‘why me?’ or ‘why now?’, next time you feel like asking those questions stop and breath, understand that those questions will not solve anything. You just need to battle your way through to the other side of the storm. It will be hard, but if you give up, you won’t see the wonders that are waiting for you on the other side.

Life is truly a lottery, some of us soar through life with ease and others battle endlessly. However at the end of the day, what will be will be. All you can do is battle on with the knowledge that you are fighting for a reason, that things will get better, and you will conquer every storm life throws at you.

Posted in April 2013, Archive

What caused my Dystonia?

Posted on by dystoniaandme

Since Dystonia started affecting me nine months ago, I  have often asked what caused it? I have accepted the fact that I have Dystonia, and why it is me that has it is no longer important to me. What does matter to me is what has caused it!!

I understand that Dystonia is caused by a part of the brain called the Basal Ganglia sending out the wrong signals, but what caused it to do that? Is it genetic, do I have a gene mutation, is it due to dopamine, have I fell and landed on my head to many times? It may seem like a trivial thing to dwell on, as after all knowing why/what caused the Dystonia, does not change the fact that I have it, all it may do is change my treatment plan. Yet it remains an important issue to me, I need to know what caused my brain to stop functioning the way it should.

What I cannot understand either is why the Doctors do not want to find out the cause? I had a CT scan done back in August which confirmed that there was nothing structurally wrong with my brain. Knowing that is great, it’s a relief and something that I can strike off as a probable cause. However beyond this scan no other test has been done, so how can they treat me if they do not know the cause? I know in many cases the cause is not always found, however surely the logical thing to do would be to test for gene mutations, trial me on levadopa etc, check that there is no cause which would require a different treatment plan, before trying and the majority of the time failing, to control my symptoms?

I try my best to avoid thinking about what has caused this, as I understand that I am unlikely to get an answer any time soon, but that does not stop me wanting it. All I can do is hope that a doctor will eventually test me for possible causes. Even if an obvious cause can not be found, I would be much happier knowing that they had at least tried!

So for now, I shall cross my fingers and hope that I will one day get the answers that I need. Until then I shall continue to press my doctors to carry out the tests, until they decided to listen to me.

 

Upcoming Hospital Admittance

On Tuesday I wrote an email to my consultant, explaining that now my whole body was being affected by my dystonia and that I no longer knew what I was expected to do. I have tried to bring a number of positive activities into my life and carry on with everything as much as possible without letting my Dystonia affect me, however all of these activities are rather hard to do when your whole body is out of your control. I asked him for advice, and if I he could refer me to anything or suggest anything I try. Yesterday my consultant neurologist replied, he apologised for how hard it was to get me treatment due to long waiting lists, and has offered to take me into the hospital for a few days (up to a week). Whilst in the hospital I shall see him and the Neuro-physiotherapists. I am rather hopeful that this shall mean that  I shall come away from my short stay there with a better idea of how to cope/work around my spasms.

I also received a couple of letters from my consultant in the post yesterday. One of them was a letter for us to take when ever we go to hospital/A&E, so that the hospital know how to treat me. He sent us several copies of this letter, which I am extremely thankful for, as it should enable me to receive the correct treatment with ease from them. Another letter was a copy of the one he has sent to my GP, explaining the treatment he is currently giving me (botox injections to the jaw and neck) and that he wanted me to start me on Clonezpam. I had mentioned to my GP the other day about the fact my consultant wanted me on this new medication, but because I did not know the dosage he was unable to prescribe it for me. This now means that I will be able to phone my GP tomorrow and ask him to prescribe it, as the dosage has been written in the letter. I am rather excited to try this new medication, as it should hopefully prevent my Non Epileptic Attacks.

I am feeling ever so happy today, as I feel like this upcoming hospital admittance, and the new medication should do me the world of good. Knowing that there is a plan in place is a very calming thought and I feel like I can relax and not worry about my little Dystonia alien as soon the right people will be able to see his antics and help me.

Posted in April 2013, Archive

Dystonia: Its a bit of a roller-coaster, would you scream or enjoy the ride?

Posted on by dystoniaandme

In life everyone has their own hopes, dreams, demons and struggles. We each suffer and achieve in situations others would not. None of us, are the same, yet we all judge each other and ourselves harshly.  As a society we are very quick to overlook all the positive and beautiful things that surround us, we focus intently on negativity like vultures. If you are not careful, the pessimistic world that we live in can appear suffocating.

Yesterday I decided that I felt well enough to push myself around a Garden centre that we visited. I was over-joyed that I was pushing myself for so long without setting off a spasm in my hands. I even managed to push myself up a slope for the first time. Now I know that does not sound impressive but it was a fantastic achievement for me, that I am very proud of. It took me a good minute to get myself up it, but I did it myself without any help!  I was having a great time,  and even had a sense of freedom due to pushing myself. However a handful of people who I came across that day, did not see the girl achieving her goals and enjoying a new sense of freedom, they saw someone who was slowing them down, a few tutted or stared as they paused to let me pass. Now I just smiled sweetly each time, as I was having too much fun to pause and give them a lecture on Dystonia. I wish those people had taken the seconds that it took me to wheel myself past them to appreciate some part of life instead of focusing on a negative, we were in a garden centre, a place where they could have easily focused on the beauty of nature.

Dystonia, like life, is one giant roller-coaster that will take you from feeling on top of the world to rock bottom in a number of seconds. You can choose to become a vulture like the majority of society, feed off endless negativity and suffocated in it. Or you can choose to accept there are days when you’re not going to be on top of the world and things will look bleak, but you can still take the time to appreciate what you have in life. I could very easily roll over and feel sorry myself, and stop trying to defeat this hideous illness. Instead I fight day and night against Dystonia, I try my best to be optimistic (though some days I can be a bit grumpy), I appreciate everything this illness has done for me e.g brought me closer to my family, showed me friends in the unlikely places and much more.

Dystonia is a challenge, and I plan on enjoying every little achievement I make. Small steps can lead to big things, who knows where I’ll end up.

Posted in April 2013, Archive

Exciting & Empowering Day

Posted on by dystoniaandme

Today has been such a fantastic and empowering day! I had been looking forward to today all week as I had planned to go out and see a few friends and then have a personal training session. Normally my friends would come to see me, and I would sit in the middle of my bed so that if I do have a Non Epileptic Seizure I am safe. Instead I went out to my friend’s house, and my mum left me there on my own. This was the first time I had been left in someone else’s house on my own since July 2012. This excited and scared me. It turned out that I had no reason to be scared as it went perfectly. I spent the time sitting down, laughing with them and for a few hours felt like a normal 20-year-old. This has given me confidence to venture out more, I know that eventually my little Dystonia alien will act up but I cannot let the fear of that keep me from trying to establish a normal social life.

I had not been able to see my Personal Trainer for a few weeks as my spasms had been so bad and more of my body had been affected (only my left leg is unaffected now). As usual I was really looking forward to today’s session. I love our sessions as I am doing something proactive that not only challenges my little Dystonia alien but makes me feel positive about myself.

In today’s session my dystonia attempted to act up, and we worked around it. I paused when the spasms made it to hard to do that particular exercise but carried on as soon as it released. It was an extremely good session and I only had one tiny Non Epileptic Attack and a handful of spasms in it, which I thought was fab considering it had been a few weeks and my body’s not been great recently.

My Personal Trainer and I had previously discussed trying out a TENS machine to try to counteract the spasms. Whilst my hand was in spasm, he put the TENS machine up to full power and within a few seconds the spasm in my hand had released. The theory behind this is that to use a set of muscles another set has to relax, so by stimulating the relaxed muscles the spasming ones had no choice but to relax. The positive outcome it seemed to be having amazed me, it was like having a remote control for my Dystonia alien. I have no idea if this will happen on other parts of the body or if stronger/different spasms will react so positively, however this is an exciting experiment that I am going to enjoy greatly. I am planning on videoing my hand in spasm and how the TENS relaxes it, so that I can show my consultant.

If anyone has tried using a TENS  before for Dystonia please let me know, I would be extremely interested to hear how you got on with it. You can get in touch with me by either commenting on this post or by going to this page https://www.facebook.com/dystoniajourney where you can inbox me privately or comment publicly.

 

Posted in Archive, March 2013

A flicker of faith restored for the NHS

Posted on by dystoniaandme

On Tuesday night I ended up going to A&E to be treated for dehydration. By the time I was seen I had been without water, medication and food for about 32 hours. I count myself extremely lucky that the triage nurse and Doctor who treated me actually knew about Dystonia – this is a first! It took awhile to get a cannulae in me as my veins had done a disappearing act. I was given IV fluids and IV medication. The medication they gave me was called procyclidine. I had never had this medication before and was stunned by how well it worked.

The doctor who was looking after me was very caring, and came and checked on me every five minutes. He instructed me to take the procyclidine for two days (today is my last day on it). I am extremely glad they administered it to me as it really does seem to have had a beneficial effect. I am going to discuss with my consultant, whether it was worth continuing this medication or not.

I am glad that I was treated by two very nice people on Tuesday, as it restored a bit of faith in me for the NHS. Every time I am dismissed by the medical profession  it ends up inspiring me to make a difference! Just because my illness is not well known does not mean I should be shoved to the side.

 

Posted in Archive, March 2013

Disgusting Medical Care

Posted on by dystoniaandme

I am seriously fed up with and disgusted by the treatment I receive from the medical profession! Even my GP, who is usually in my good books, has appalled me. Since 2:45pm yesterday afternoon my jaw has been clamped shut and deviated. I cannot eat, drink or even take my medication and have not done so since that time yesterday! We asked my GP to do a home visit, and after feeling my pulse and stomach he left. He claimed that he was sure my jaw would go back eventually and that he did not know what to suggest.

I know that eventually my jaw will go back. Eventually being the key word. We do not know how long it will take for my jaw to EVENTUALLY go back. I have not had a drink of water or taken any medication in almost 27 hours now. How long do they expect me to go without fluid or medication? Surly the logical thing to do is to admit me into hospital put an IV and administer me fluids, my meds and muscle relaxants/pain relief???

I do not understand why I should have to accept and put up with such disgusting treatment! I am disgusted and highly irritated!