For those of you that don’t know me, my name is Jayde Moyle. I am 22 and was diagnosed with Dystonia when I was 13 years of age. I am a primary ST sufferer of Segmental Dystonia as my arms are affected as well as my torticollis. I have experienced problems with this syndrome since I was two, and as I developed and changed from a young child into a young adult, so did my Dystonia. From small fine motor difficulties at school to painful spasms and emotional/social struggles, I have managed to find the happy fulfilling life that I was always meant to have – I guess I just never realized that was possible when living with Dystonia. Various significant events have created my new outlook on life, and every single one of them has been important in shaping the young adult that I have become. One of these events was the DBS – Deep Brain Surgery.
I went to my neurologist (Dr Rick Stell) to get my 3-4 month Botox injection (without an EMG), which was my primary and most effective way of dealing with Dystonia. Botox was effective but just not effective enough for a young adult trying to live a normal life. Don’t get me wrong, it was still pretty good, I mean the difference between my neck at the beginning of Botox to when it was starting to wear off was astonishing. Having Botox injections simply meant I could walk outside and go about my daily tasks without little discomfort, and having no Botox meant my neck tilting, almost sitting on my right shoulder and in pain. So as I sat in the room with Dr Stell, pretty happy at this time I might add, I said to him, “I need more Botox”, and as usual his reply was, “Well Jayde you are looking pretty good, let’s hold off for another month.” I was always looking for more, but he was right; my neck was pretty good and the longer between injections the better. Being so young and having had Botox injections for ten years, he knew that the chances of developing anti-bodies was high, so we always tried to stretch out my visits. On this particular visit I asked him if there was anything else happening in research and it was then that he told me about the DBS.
He told me that only one other patient with Dystonia had gone through the procedure in Australia and that his had been successful. He suffered from severe symptoms of Early-Onset Childhood Dystonia, also known as Generalized Dystonia. As you are aware of, all of us are different, some of us are, as my good friend Pam from Jacksonville would say, “left lookers,” “right lookers”, “Sky lookers”, and in our case “down lookers”, so when he told me about the DBS, I knew there was no guarantees of success because I was the first one with Segmental Dystonia to go ahead with it. He didn’t have to say much more that day; I already made up my mind before I left his room. I had several months to think it over, but the answer was always yes. Yes, there were complications, risks; reasons not to go ahead with it, but for me up until that point, my life had been a process of trial and error, so why stop now. I just had the attitude of, “well, it’s just like trying a new drug; if it works it works, if it doesn’t, it doesn’t”. I was always excited about the procedure and anxious coming up to it and not for one second did I doubt my decision nor did I stop and think about it. I knew that my neurologist would have never mentioned the DBS if he didn’t think there was a promising chance it would be beneficial.
The day I was admitted, my sister shaved off my beautiful, wavy thick hair in the hospital. She was crying but still I was yet to shed a tear. Nothing seemed to faze me until I was wheeled away on the bed the day after. I don’t think that even now, words can describe what it was like to have a heavy metal frame bolted to your head and attached to the bed. All of this, which I might add, was endured while I was awake, so I wasn’t prepared at all for any of it. The pressure in my head was intense, so intense that I have to hold tears back as I write this. It was the pressure of the metal frame that got to me the most and it is the one thing I remember when I talk about the experience. I don’t know what I was thinking before the operation! Nothing prepared me for the number of needles injected into my head, the many doctors that were present, the clean – sterilized look and smell, the feeling of nausea and anxiety. As I laid back on that table, I honestly questioned my decision and hoped that it would all be over soon.
As time went on throughout surgery I became very irritable and upset. The pressure became unbearable and I started to panic, but as soon as they had placed the electrode in the correct position, they were able to give me morphine to help relieve the pain. After four hours of surgery I was sent to the Intensive Care Unit where I was to recover for the next couple of days. I remember coming to, crying and asking my family around me, “why, what have I done this for, my head hurts”.
Four or five days later I had the second surgery, where they inserted the stimulator beneath my chest. All swollen and sore, I was still recovering from the first surgery, but was looking forward to it all being over. I was very sore with the second surgery although it wasn’t as emotionally and physically draining, it was certainly painful and uncomfortable for weeks later.
It took months after surgery for me to recover. I was tired, sad, frustrated, annoyed and anxious to see the results, but I never had regrets about the procedure. I think the toughest thing about the surgery was, well, umm… actually I am not sure. I mean yes there was pain involved and at times I questioned my decision, but that was all in the moment. They are just moments in a lifetime that pass by so quickly. I remember the surgeon coming past my room after first surgery, and telling me that one of the electrodes isn’t positioned exactly where they wanted it to be, and if need be, would I consider going back in the following day. I smiled and said that would be fine, and when he left I cried. I told mum that I didn’t think I could do it all over again, knowing what I knew, how I felt… I just didn’t think it was possible. As it turned out it wasn’t necessary and I was lucky enough not to have had to make such a decision, I’m not sure what I would have done. What I do know and remember are the people that were around me. The doctors, anesthetist, my neurologist, the nurses, my family and friends. They were all fantastic and made the experience so much easier.
I guess the experience is something you would rather not have to go through, but at the same time it is bearable, and definitely worth it. The other day I went fishing on my dad’s boat and I was seasick. I would do anything to stop being seasick; it is one of the worst feelings ever as you just want to jump off the boat and swim to shore. I was so sick that if my dad refused to take me into shore, I would have cried. I am pretty tolerable when it comes to pain but being seasick reminded me of what it was like in surgery. Its uncomfortable, sickening and you would almost do anything for the experience to go away, but when it has gone away, it becomes just a moment in your lifetime. That’s how I look at the surgery, it was only moments in my life, that although were difficult moments to endure – they have created a life long journey of positive, exciting and new experiences for me. Don’t get me wrong, I have had some of my best times in my life with Dystonia before my surgery, so the DBS is not the be all and end all of treatments, but it has certainly altered my life. Would I be the same person I am today without DBS? Definitely not. My health is better, my posture is straighter, I am able to share myself more with others because I don’t have the physical limitations I once I had. I am as normal as anyone walking down the street; nobody would look twice at me and think something was wrong. I want to give others courage to go ahead with this surgery because I believe that it can be beneficial. I have not had Botox for two years now, and we are still continuously seeing the benefits of the DBS. It is not a quick fix to relieving the symptoms; it is a lifelong process which is maintained and improved over time. I believe I am still receiving its benefits, and actually just the other day I had the generator turned up 0.2 of a volt. I already feel better than I did a week ago so it’s exciting for me to watch myself slowly change with my posture and neck slowly becoming straighter. I think that without a doubt I made the only decision there was to make, for me that is. Having the DBS has to be something you and your neurologist decide on and are comfortable with. I am looking forward to hearing about others experiences with the DBS and I hope they are as positive as mine has been.
UPDATE, January 2008
I don’t know where to begin! Howard asked me to write a follow up article for the magazine on my experiences with the DBS. Deep Brain Stimulation – when I say it – it is hard to believe I had it done nearly five years ago. And believe me when I say – it is my life line!
Last October I was just living through the motions of every day. I couldn’t work, it was difficult to eat and drink – and it was hard to hold a conversation. I found it difficult to breathe, I found it difficult to think and I struggled to fall asleep at night. My movements were out of control – spasms in my neck just wouldn’t stop – my hands and head shaking!! I had lost my lifeline, and although I knew it wasn’t forever, it didn’t make it any easier. More than ever now I truly know the meaning of understanding that everything happens for a reason.
Since I had the DBS and up until October last year I had very few spasms, the occasional bad few weeks, but generally things were pretty good. It probably happened over a period of time (about 3-4 weeks). I started feeing more tired than usual and my neck was a lot tighter. Eventually, towards the end I was running on empty and realised something was not right. I went to see my neurologist and what had been some very difficult weeks all started to make sense. My stimulator had burnt out and I needed a new one. My battery expectancy did not show up when I went to my regular checkups for reasons that aren’t important, but usually it does so your stimulator is replaced well and truly before it dies.
From the moment my stimulator died I felt my life slipping away. I could no longer do the things I wanted to. Everything was so different and although I was like that prior to surgery it wasn’t the same. I guess it was because prior to surgery I was just living through life whereas after DBS I was actually living it. In those two weeks I had time to reflect and realised just how much of a difference DBS had made to me. Without it I struggled with everything – and although I still did the things I did before, it was definitely more difficult, frustrating, emotional and exhausting. I ended up having to stop work because I was so physically and emotionally drained that I just couldn’t do it.
I realise now that Dystonia is very complicated. People say to you ‘just be positive’, ‘make the most of your life’, and all the rest that goes with it, but it is not about that with Dystonia. Dystonia is a problem because it makes you physically and emotionally drained. It’s not the stares you get or the spasms and awkward movements that bother you; it is the impact it has on your body. When you’re physically and emotionally drained how can you expect your body and your mind to be healthy consistently? So the next time I am a bit down and feeling sorry for myself, I’m not going to punish myself or feel bad for feeling like that because sometimes our bodies just can’t do it and that’s ok. From the moment my stimulator stopped to the time I had a replacement I did a full circle. My energy levels were lower than usual but still ok, my attitude to life and my confidence was still intact and although my movements were crazy I was still able to work. It wasn’t until two weeks later that I became exhausted from the constant movements and physical challenges I endured.
From that experience I could really see just how much the DBS had a positive impact on my life and how lucky I was to be reminded of what it was like without it. Without it my physical and mental being is just living through life but with the DBS, physically and mentally, I am living it.
Life has been so full on. I am still working for the Education Department and I am in my second year at Creaney Education Support Centre where I teach children with special needs and diverse abilities. Currently, I have taken on a new role at the school as the Early Intervention Teacher. It is a government trial that has been introduced in schools and Creaney is in its first year of practice. My role is to deliver a fast paced, highly structured intense program to kindy and pre-primary aged children with Autism and/or Global Delay in hopes to provide them with the necessary skills and knowledge to be able to cope in a mainstream year one classroom. I have 5 students and 4 staff that I work with daily so the responsibilities and roles I have are very demanding. It is definitely stressful but I absolutely love it. Our school recently won the best school in the West Coast Metropolitan area (Perth, Western Australia) for 2007. We won over high schools, primary schools and we were the first Education Support Centre to ever take it out. I never thought I would be a part of something like that and I never believed I would be as successful as I have become.
A month ago I had my stimulator adjusted. They changed the area of the brain which the stimulator hits (this is done in a regular check up just the same as when they change the frequency/voltages and turn it off and on). When I left the clinic I was fine and when I was driving home I had a twitch in my right leg. By the time I got home my mouth was twitching and my right arm was making involuntary movements. My jaw was tight making it hard to speak but my torticollis was fantastic. It was bazaar! The next day it had settled a bit and my movements in those areas were not as volatile. So we decided to leave it for another few days and then review it. After a few days I was a lot better and it was only my right arm that appeared to be affected. Strangely enough the movements were not my regular Dystonia movements prior to DBS, and, after some consideration, we decided to leave it to see if it would settle. We did this because my neck had remarkably improved. It was as if the spasms were working their way out through my body.
I am so glad we did decide to leave it because a month later I am the best I have ever been. My neck spasms are 99% gone. My hand tremor is barely there and I have no head tremor. The only thing left is a spasm in my right thumb which is quite strange and was hard to get used to but it’s not visible to anyone. It is bazaar but I don’t feel as though I live with a movement disorder anymore. I know it’s there, but it is as if I am the only one that knows….
I have never in my life been so driven, content and confident in what I do, in who I am and how I present to others. I love going out meeting new people and I even love to go dating now! Just being out there, talking to people and learning about the world is fabulous and I love every minute of it. I am so lucky I had the opportunity to have the DBS. I know it isn’t the answer for everyone but it is definitely worthwhile if you do have the opportunity. I have read some articles in the past where people have not had as positive outcomes as I have, but I believe everything takes time, whether DBS is the right choice or not. You have to be willing to try new things if you want something to change. If the DBS hadn’t have worked for me it wouldn’t have been the end of the world because I would have tried something else. I would have kept trying in hope to find the right treatment for me. It turns out the DBS was the right choice for me – and it has taken all this time – five years down the track I am only now seeing it’s true benefits. Just be patient and give things time. Everything happens for a reason…..xoxo
4 Discovery Circuit
Iluka, Perth, Western Australia
My mom and I wanted to thank you for hosting such a great symposium this year. This was our third year and we are looking forward to next years. E. Mathews