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My Journey

Since I was 5 years old, when I started school I always knew I was a bit different compared to all my friends, but it never bothered me. I was very shy and quiet, I couldn't say 'S' words very well, my head always held to the side and my left side felt 'different', and my index finger never fully extended. Other than that I was the same as everyone else, a 5 year old starting school, making new friends and beginning my journey through education. I was accepted.

I was told I had Cerebral Palsy by my parents after being referred to various specialists since starting school. I don't really remember it being a big issue. I don't remember questioning it, I could do everything my friends did, I just needed a bit more help at some things, I simply accepted it and all my peers did too.

School was just, school, like any other youngster, up till about the age of 10.

I started middle school at 9 and the majority of my classmates from lower school went to a different school to me. There were only 3 of us who attended my middle school from my lower school class. I was leaving behind a whole bunch of friends and didn't really know what to expect.

I remember starting middle school and being very nervous, there were a whole lot more people at middle school compared to lower school! I was a small fish in a big sea!

The majority of my teachers were unaware that I had Cerebral Palsy too, I don't know why, but they just didn't. This meant that at the start of every lesson, every year from year 5 till VI Form, I had to tell my teacher's that I had CP and it affected my left side and speech. I felt different. None of my friends had to tell teachers they couldn't speak properly or they couldn't do certain things in class. (Silly little things, but had a massive impact on me) At lower school everyone knew, I didn't have to bring it up.

Not everyone at middle school and upwards understood that I had a disability,. I was bullied, laughed at for sounding different. I was asked questions by a lot of peers and others seemed to be awkward around me. I started to feel odd because everyone noticed I wasn't like them.

I started to get conscious of my disability around this age and I became nervous to speak up in any class. I wouldn't answer questions, I hated group work and I dreaded drama lessons. At lower school I was always in the school plays and didn't mind acting at all. Things were definitely different. From the age of 13 I never did drama again, I was kicked out by my teacher for stuttering, and refusing to read aloud.

Around 11, I started to develop what I call my 'block'. Where words I want to say just don't come out. I don't know why it happened, or how it developed but I just knew my speech wasn't as fluent as it was before.

I made it through middle school and started upper school when I was 13, almost 14. During the Summer I had a doctors appointment, we spoke about how I'd got on over the last few years and how I was starting a new school. My doctor picked up on my speech and asked me to say where I lived. I couldn't answer him. I blocked it all.

It was then suggested that I get referred to speech therapy. I started a new school and waited to be appointed a speech therapist to help me speak better. It was a tough time.

I don't really remember deciding to have speech therapy, I was just told to meet my mum at the office. I had to leave lessons every Tuesday for a couple of months to attend. I tried to keep it a secret, but it got out, people started to question it as I was disappearing from lessons every week. It wasn't the first term at upper school I had planned.

It wasn't all bad though. My form tutor at upper school was amazing. We had a vertical tutor system, where students from years 9,10 and 11 were in the same form class throughout. I was exceptionally lucky to have the learning guide (tutor group) I did. My peers from my year were lovely and our form tutor was 'one of a kind.'

From speech therapy I had a list of words (S words mainly!) that I had to practice. My form tutor spent time every day going over my words with me. To this day, I am forever grateful for the help she gave me and the confidence she had in me from day one. I'm so glad to say that we are still in contact today and I can now say 'small' with no trouble at all!

There were not many teachers that I respected or who truly understood my disability. But there were a few. My drum teacher was another one. I started playing drum kit when I was 14. At first we thought I would only be able to play one handed but over the first few weeks/months I was then able to play with two hands.

Being a teenager is tough enough, but being a teenager and not being able to speak properly, or stand up for yourself was one of the toughest times I've been through. I just wanted a voice, to be heard and accepted like I was when I was younger and be like everyone else. That was when I found music as my voice. I was most confident behind a drum kit. This was definitely a turning point for me. I knew from then that I wanted to be a musician and just do what I love, whatever ability I was able to achieve.

I did my GCSE's and went on to VI Form where I struggled a lot both academically and with my disability. Teachers weren't always supportive of my needs and just saw me as a troublemaker or lazy.

As I got older I understood more about how my disability affects me and the impact it was having on my life.

At 17 I asked to be referred to physiotherapy as I wanted to see if there was anything they could do to help as my left hand was getting more stiff and my fingers were over extending, I had an appointment but it didn't turn into anything. I was discharged the same day and told to just 'use my left hand more'.

I still didn't speak up in many classes as I was still very conscious of my speech. One day at school that will stick with me permanently is when I stayed behind to ask one of my VI form teachers a question. I stuttered and blocked it and she then looked at her watch and said 'how long are you going to take? You're wasting my time...'

I made it through VI Form and scraped through with two A Levels in Music and Psychology. I applied for university, even though some teachers said I would never get in. I had auditions at two and was offered places at both. I was over the moon!

I started university at 18 and moved to the other end of the country. This was the biggest step in gaining the independence I'd always wished for. Growing up I was fairly independent but it was always safer and easier for my parents to do certain things.

I was using my left hand more than I ever had due to not having my parents around to help. This caused stiffness and weakness, and at Easter in my first year I asked my Mum if I could go to the doctors and discuss with them the challenges I was having, to see if there was anything that could help, and that I had noticed a funny feeling in my left shoulder since I was a teenager.

My family said to me there was probably nothing they could do, they didn't do anything last time so there will probably be nothing they can do now. Don't get your hopes up to much.

Looking back now, this doctors appointment had the biggest impact in my life. If I'd listened to my family and not gone to the doctors, my life today would be very different. I wanted to go, it was my decision as an 'adult' to decide what I would do regarding my disability and my future. I don't begrudge them for saying what they did though, I was able to do everything I wanted but I was intrigued to see if there was anything else that may help make things easier.

It was then that I was prescribed Baclofen, this is used to reduce stiffness and spasticity in people with Cerebral Palsy. I started taking it and my life changed forever. It wasn't plain sailing though.

Over the first few months, my stiffness was reduced but it also reduced the strength in my arm and I found it extremely hard to play music. What had I done? I couldn't play to the standard I was at before. Why did I choose to take this medication? I was finishing my first year of university and was struggling to hold a drum stick properly. I was in a tough place once again.

I was able to build up strength in my arm gradually though, and things were starting to get back on track but, I was then about to hit another wall. The 'funny' feeling I'd had in my left shoulder was becoming more prominent and my arm began to move uncontrollably.

As I increased my baclofen intake, the stiffness reduced and my movement increased but the same time this was releasing my involuntary movement more and more. I didn't know what to do. One day I could play the best I ever could, another day I couldn't stop twitching. Again, I questioned myself, what had I done?! I should have just listened to my parents.

By the time I'd started second year I was a twitching mess. I couldn't sit still, but my left arm was the least stiff it had ever been and I could move my hand so much more. The baclofen was helping but also causing this crazy twitching.What do I do?

I became fairly ill in my second year, I had hospital tests where I was told I could have further investigations but it may be best to wait till after I finished University to have any intervention. I was falling behind in my university work because I couldn't type as I was twitching too much. I developed a low immune system, probably through stress, and I developed alopecia and all my eye lashes fell out and I had a bout of insomnia. What had I done to myself and what should I do next?

I spoke to my parents, doctors, friends as I didn't know what to do next. I was in a bit of a state. I ended up reducing my baclofen intake which resulted in slightly more stiffness returning but I was able to get my health back up slowly. My involuntary arm movements had not decreased at all though and were still a prominent part of my life.

My tutors at university were also amazing, without them I would not have progressed as well as I did. They listened, understood and helped me work things out. It's thanks to them that I developed my involuntary movement into Little Guy in 2014.

At this point I didn't know what my involuntary movement was, I was waiting for hospital appointments to find out. I was referred to Newcastle's RVI where I met with a doctor who then referred me to a specialist in movement disorders. This was the start of numerous tests, scans and appointments. I had months of tests including CT scans, blood tests and MRI scans, and in November 2014, I was officially diagnosed with my Mixed Hyperkinetic Movement Disorder, consisting of chorea, dystonia and a hemiballismus.

I remember this diagnosis. I'd finally got an answer to the 'funny' feeling I'd had since I was a teenager and had mentioned for a couple of years. I knew I didn't just have CP and it was finally confirmed.

As I had a diagnosis I was able to research more about it and started a new medication for these movements. It turns out that a hemiballismus is the most rarest movement disorder you can get. At the time I felt pretty excited that I had something different, but 4 years on I'm not as keen as I was to have something no-one really knows much about as there is no cure. My medication that I take for Little Guy/hemiballismus makes me extremely tired and lowers my mood too. However, it does reduce my movements and stops my arm from punching me in the face so I decided to stick with it.

Over the last few years I've managed to build up the relationship with Little Guy to the point now where when I feel him coming (funny feeling) I'm able to simply tap my fingers and he stops and I'm back in control.

The journey with Little Guy has been one of the toughest yet, because when Little Guy used to appear I felt very disabled, I couldn't hide the fact that I had a disability. With my CP sometimes I was able to mask having a disability by being 'shy'.

During the development and 'growth' of Little Guy I was still studying and trying to be a musician. I love performing and sharing my music but the only way I could do this was to have Little Guy with me. He became part of my identity as a musician. I couldn't perform without him making an appearance. At first it was 'cool' how my movements were so crazy but stopped as soon as I played. Everyone commented on this amazing 'phenomenon'.

However, these comments got pretty boring and tiresome after a while. I'm a musician, I wanted people to comment on my music, not my disability. Little Guy was stopping me being what I had always dreamed of being - simply a musician. It was tough again, and I had to decide whether I wanted to be seen as the 'person who's arm stops twitching when she plays' or a musician. I knew what I wanted more but it was not going to be an easy ride.

Since Little Guy became very visible I was asked to perform and to show the benefits music has on my disability at various performances. Sometimes I felt people only wanted to see me do my 'magic trick'and not hear my music. It was a tough position to be in as the only way to share my music on stage was to be accompanied my Little Guy.

This however, was my main motivation, to get back to seeing myself, and having others see me as a musician.

Every year since 2014, I've had MRI scans to check the damage in my brain. In 2017 I was told that the damage in my brain had still not changed and there was no evidence of a brain tumour. This was the start of building up my identity as a musician. My disabilities were not going to get any worse and I could continue to develop my musicianship. I was building up a good relationship and understanding with Little Guy and he was making appearances less and less on stage.

In January 2017 I was asked by my neurologist if I wanted speech therapy and physiotherapy to see if they could help. I said yes and so in Summer 2017 I began physiotherapy and speech therapy once again, but this time I was determined for it to have an impact in my life. It has.

I was given finger splints to stop my fingers from over extending. These little bits of plastic have reduced pain in my joints and allow me to play more notes on piano. It was the start in being a musician again. With my splints, my hand doesn't look as odd as it did. It's not as obvious as it was that I have an issue with it.

I also started doing physio exercises to build up movement and strength in my arm. The progress has been great, but it's not easy when there is no-one there to push you or help you like when I was younger. It's my decision whether I do my physio or not, only I can make an impact in my life by working hard.

I then started speech therapy and had 6 weekly sessions. My speech has always been the hardest part of my disability to live with. My Cerebral Palsy doesn't affect my cognitive function, but it does affect my muscles which in turn affect my mouth. I understand everything people say to me but as soon as I start to speak some people look away, think that I can't talk or don't understand them. This has always been tough to live with.

I have worked so hard on my speech the last few months and have achieved things I never thought possible. I set myself aims with my speech therapist at the start:

To read aloud to my nephew

To make phonecalls by myself

To give presentations as fluently as possible

I'm proud that I have been able to achieve all of these but is hasn't been easy. I have put so much work in and I've not had anyone around me to help me this time. Everything I have been through in the past with learning music and developing Little Guy though helped me to understand that with time and effort I can make progress, however slow it may be.

In March 2018 I got my bespoke lycra splints which were to help my posture, put my muscles back into the right place and hopefully reduce my twitching too. The progress with them was not as easy as I hoped. They pushed my hand into different positions which caused a lot of aches and pains and my hand and arm movements were different with them on, especially when playing piano.

In July 2018 I had my review appointment for my lycra splints. I'd spent months trying to improve my movement with them but it just wasn't to be. My shoulder splint has improved my posture and positions of my back and shoulder but my hand splint made no positive difference. It caused pain and limited my movement even more.

I also met my brain specialist this year to discuss a brain operation I could possibly have. It's called Deep Brain Stimulation (DBS). This procedure could reduce my involuntary movements up to 60%. Something I have always dreamed of - not twitching all the time. But, it's a big operation, there's a small risk of death, like any procedure. As well as a small risk of stroke and brain hemorrhaging.

The main concern my brain specialist has is that there may be a risk of balance issues and speech difficulties following the procedure. As I already have a speech impediment there's a risk it could get a lot worse.

There's so much to take in and as I'm a 'grown up' now, I understand everything. The only person who can make this decision is myself. It's days like this when I wish I was a kid again and someone else was in charge of my health care and making these decisions.

Looking back I think I've made the right decisions with my disabilities, especially since I became 'in charge' of them. There's been points along the way though where I wish I didn't have to be in charge. I'm aware of my disability a lot more nowadays, it has a big impact on my life. Throughout my life, I've accepted my disability and other times hated my disability. I don't think that there will be a constant one or the other. I think it will continue to change depending on the situations I'm placed in.

But one thing I do know is... my disability makes me who I am. I'm able to do what I love everyday and I wouldn't change a thing about my disabilities, or the life I've lived so far.

I'm excited to see what's next on my crazy Journey we call Life! :)

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