Since being diagnosed, I’ve been visited by multiple health professionals. It’s incredible how many people are involved with my care, to make my life easier as my illness progresses.
Firstly, I have an MND specialist nurse – she has a wide knowledge of MND patients, which allows her to have a more informed idea of where my illness could take me. She is paid by the MND Scotland charity, and without her, my care wouldn’t be as efficient.
Next there’s an Occupational Therapist who helps me with my life around the house, to make tasks easier and maintain my independence for as long as possible.
My Speech and language therapist keeps track of my speech and swallowing, as the majority of MND patients lose the ability to speak. Because of this, I need to learn to use a speaking aid before it gets to that stage…if it gets to that stage, but due to the weakness of my hands, I’m learning to use the eye gaze for my speech. Eye gaze is a devise that is programmed into a laptop and allows me to communicate by looking at the letters to spell out words on the screen. When first using the eye gaze, it felt like I was giving up with my speech, but once I started I couldn’t be more grateful to my speech therapist for introducing the technique to me, as it makes me less upset and anxious about losing the ability to talk. However, it’s frustrating to use, as it’s a lot slower to reply and I feel like I could be finished the conversation already. On the bright side it’s teaching me to be more patient!
I also have a Physiotherapist. Her aim is to keep me on my feet for as long as possible bygiving me walking aids, such as my splint, which sits in my shoe and ties around my calf to keep my foot at a 90 degree angle. When I first got my splint I was overjoyed, I was overjoyed, I was walking more naturally and it felt as if my leg was all fixed. I suppose it gave me confidence and hope. Now it’s a conversation starter as people will ask what happened to my leg.
At some point I’ll also have a Dietitian, but as I’m still able to eat everything I haven’t met mine yet. There is also my Welfare and Benefits Officer who has taken care of applying for anything I need and that I’m entailed to throughout my illness.
I chose to move home soon after the 25th January when I realised I wasn’t as independent as I originally thought. Walking back to my flat after having lunch with my mother I was starting to feel tired, and as a result I fell over and managed to split my chin wide open. I started crying with the pain and couldn’t stop because I was in so much shock. Falling over for me is very confusing as one moment I’m walking and the next minute I’m on the floor injured and I can’t remember how or why I fell because it all happens so fast. After being picked off the floor by my mother and a passer-by, who happened to be a medical student, Mum went back toget the car to take me to the hospital. I was holding my chin with paper tissues to try and stop the bleeding.
Being in hospital made me uneasy as the professionals always seem to feel the need to mention that I’m young to have MND…as if I already didn’t know this! I try to hold it together as the doctor came into check my wound, but I found it difficult as I was petrified and in pain, so before they could clean me up I had to go to the toilet. Looking in the mirror trying to see my cut was difficult all I could see was the length of it. Back in my cubicle, the Doctor comes in to tell me what she’s going to do. Firstly, she started off by cleaning the wound, which wasn’t pleasant to say the least. Then onto the local anaesthetic and, to be honest, from there it all went downhill! I’m not the biggest fan of needles but normally I just pluck up the courage, however, when the needle came towards my face I just started to freak out and moved my face while pushing away her hand. After calming down and asking for my phone and headphones I just closed my eyes and we tried again while I listened to some music. I cried throughout having the 6 injections, and once they were done I started howling uncontrollably, I hated it. The doctor then started to put glue in the wound and I could feel her pulling on my cut. I pulled away again. By this point the doctor obviously had had enough and called another nurse in who you wouldn’t mess with! She took over gluing and put on butterfly stitches and a plaster, even though the doctor mentioned earlier that I’d need proper stitches…I think they just wanted me out, and I definitely wanted the same!
Back at my flat I decided that I wanted to come home with my mum. Sleeping that night was uncomfortable, as lay on my side normally but couldn’t as it hurt my chin. We woke up in the morning and headed straight home, not speaking in the car as it still hurt far too much. The next couple of days I just slept as I was so tired, then one night I was woken by an awful smell and I knew the cut on my chin had opened itself as it was damp, both the butterfly stitches and the glue had come off! In a panic I called mum and told her what had happened. She came home from work straight away and patched me up until we could get to the doctors in the morning, but as soon as I moved my head I felt my chin open again!
We visited the doctors on Tuesday morning and I was sent straight to A&E as my wound was infected and I had a high temperature. I felt so weak as if I could faint and all I wanted to do was sleep! After being examined and having an x-ray to see if there was any stones in my wound the doctor gave me two options, as he couldn’t stitch it up until Friday as he needed to give the antibiotic chance to clear up the infection: I could come back on Friday and get it stitched, or let it heal naturally and my scar would be thicker. I choose the less emotional of the naturally healing process knowing that once it was healed it wouldn’t be so obvious.
By the end of January I knew I had give up my flat in Glasgow and complete my college work from home, which made me incredibly upset! I had loved having my own flat with my friends. My future was meant to be in Glasgow, I had had the next four years of my life all planned out, but after my fall, I was scared to walk on concrete in case I hurt myself again, which is inevitable for someone with MND. My walk to college also involved a twenty minute walk on uneven concrete, ten minutes on the subway and a lot of stairs (which aren’t my forte)…not to mention having to face the journey on the way home too after a full days work! I was falling over more often, and when you fall over on a busy street no-one stops to help you up. At the end of February I went down to clear my things out of the flat.
Moving home also meant I had to change Neurologists, which meant another examination and explaining my symptoms all over again! After a while though it becomes second-nature, as I have to tell each health professional the same things as they all have separate notes. During the examination she mentioned that, by the way I walk she thought that I’d have weak leg muscles,when in-fact they’re strong. However, if I didn’t take my medication for my muscles they’d tense right up and vibrate ferociously, which makes it difficult to walk. She also wanted me to go for further tests to double check the diagnosis due to the disease being so unusual at my age. This gave me false hope, as a few blood tests and another round of electrolysis later, the diagnosis was still the same.
In April, after trying to catch up with college, it had just got too much and I was so behind that I felt as though I was never going to catch up, and with the exams being only next month, that I’d never get the grades I wanted. The next day I sent an email to the course director to inform him of my decision to leave the course. I felt disheartened as, in my eyes, I was giving up on my future, but I knew it was the right decision. Now I’m looking at studying online.
Since my first initial symptoms, my speech is getting worse (especially when I’m tired). The right side of my jaw dislocates everyday, which happens when I yawn. Its uncomfortable more than it is painful. Somedays I can’t finish a meal as it hurts to bite down and gets more painful the more I eat. My moods are changing, and I’m finding that I’m laughing at inappropriate times. Fighting MND is a mental battle as well as a physical one. I can’t describe how it feels to know your body is betraying you!