Making the decision...
I'm 25 years old, I have a career that I love doing music, I'm studying for my masters, life has been pretty wonderful and filled with so many amazing opportunities that I'm forever grateful for. There's so many more wonderful adventures to come too. Why would I want to change anything?
But, having a disability alongside all of this causes some challenges, it's not easy keeping up with everything I love to do with a body that doesn't always cooperate fully. That's why the decision to potentially help reduce my symptoms that tire me out everyday, cause me pain in my left side, and could allow me to live an easier life has been on my mind for the past 12 months and I believe I've come to the right decision. To have an operation on my brain called Deep Brain Stimulation, (DBS).
What's made me come to this decision? So many things, so many factors throughout my life that have inputted into my decision on why I would like this procedure...
My disability has been a part of my life for as long as I can remember, it's never not been there. Being born with the cord around my neck at birth starved my brain of oxygen and I had to be resuccitated. It's this lack of oxygen in my first moments in this world that we believe led to the brain damage I have, and the diagnosis of Cerebral Palsy I recieved when I was five.
But then again, some doctors and specialists are not sure if it is actually Cerebral Palsy or what has caused my other disabiilities. After having my diagnosis of Cerebral Palsy when I was five, I had physiotherapy and speech therapy for a few months after. I was discharged from both and did my best to keep an active lifestyle, music and dance played a fairly big part of my life growing up, (Yes, I use to dance - Irish Dance, for eight years believe it or not!)
Keeping my muscles active and using them as much as I can allows me to live as easy a life as possible despite having Cerebral Palsy. Music is still my biggest form of therapy and I'm lucky to have it as a career now too!
At 19, during my first year of university, I started medication (baclofen) to reduce my stiffness in my left side, it worked!... but also led to my involutary movement disorder appearing. It took around three years to get a diagnosis of this and during that time I found I could control my movement using music.
During the many tests I've had since I started baclofen doctors have told me that there's actually no evidence of Cerebral Palsy in my brain. There is some damage but it's on the other side to my CP symptoms. It was cool at first, but now, around four years on, this has meant that no-one really knows why I have the symptoms and movements I have or how best to treat them. It's a bit boring and annoying and feels like the road is never ending.
I'm on various medications now and they have different effects on my body, both positive and some negative. My everyday life is controlled by medication. I wake up and take my tablets, every meal I take my tablets, I go to bed and take my tablets. If I miss a baclofen dose, I seize up, if I miss a tetrabenazine dose I start twitching a lot more and can't sleep properly due to having very little control over my body. It's not the greatest of feelings and being on so many tablets a day makes you tired and vulnerable. My tetrabenazine led to me developing depression and therefore taking antidepressants. But if I stop the tetrabenazine I'll be constantly having involuntary movements. What's worse?
Being a musician is what I've wanted to do for as long as I can remember, I wasn't very good at anything else at school really. It kept me focussed in school and I had an aim of doing music, in some sort, as a career. Even though some teachers doubted my ability to achieve anything remotely worthwhile. But I proved them wrong! I have a career as a community musician, sharing my passion for music and showing that having a disability isn't a bad thing and you really can laugh about it. It's our abilities, what we can do that matters, not what we can't do.
So why am I deciding to change what I have, the life I love and have this procedure? Many reasons, some mentioned above... But also...
Behind the smile and the laughter there's everyday challenges. I twitch all the time but I can stop it by clenching my fist, tapping or playing music, but imagaine not having to do that all the time?! When I'm so tired I just want to go to sleep but I can't get comfortable because my body is constantly twitching and spasming, making me even more tired. Even with the medication I take to reduce it, it doesn't stop it completely. Imagine not having to feel that almost daily?! To be able to just lie still, and comfortably and daydream without having impulses to move my head to the side or roll my shoulders, wave my hand. More freedom in my head to focus more on what I want to do. Everyday Little Guy (my movement disorder) tells me to move my hand, arm, head. It's tiring work! Imagine not having that voice and being able to do what I would like to do straight away without a distraction! And potentially to reduce the pain my muscles cause me when they twitch and spasm, imagine not being in as much pain daily?!
Obviously there are risks to having this procedure, it can cause a stroke, hemiplegia, bleeds on the brain and also death, although these are very small percentages. There's also the chance that it could affect my speech and make all my hard work for nothing. It could also not help at all. But, I've spoken over with my neuro-team, I've thought about it all and I've made my decision.
Is it the right decision? Who knows...?! I believe it's right. My neuro-team believe it could have a positive impact on my life so I guess it's time to see what happens. There's still a while to wait before the actual procedure, as I need to have some tests and scans to confirm I'm a suitable candidate and then where exactly they'd place the electrodes and device but things are in place for it to go ahead. And yes, I'm scared.
My life is great, I live each day as it comes, and do my best to embrace every moment. I'm 25 years old, I have a career in music, I love my life and I have disabilities that can make each day slightly more challenging, but worthwhile, and I'm happy...
But I also
Imagine being 25, loving my career in music, loving life and not having to have the everyday challenges my disabilities cause and imagine what I could achieve without some of these erveryday challenges. I guess that's why I've decided to have Deep Brain Stimulation.
Whatever comes of this, I'm doing it for me, to improve my life and what I feel is right. I guess we'll just have to see what happens, and I intend to face it all with a smile on my face and potentially end up as a part robot if it all goes to plan!
