Losing my voice to MND

In the early days of my diagnosis I hated going to the Motor Neurone Disease (MND/ALS) clinic and witnessing all the other patients with varying degrees of war wounds from their battle with this cruel disease. See, I was still in denial and somehow closing my eyes was my pathetic attempt to protect myself from my hopeless future. Unable to block my ears, I was forced to hear the frightening tones of a patient who was losing their voice to MND. Something about the pitch of their groaning muffled voice used to make me feel nauseous with fear. It was a voice you would never forget, an unpleasant sound, it felt uncomfortable in my ear. Without knowing, you could sense behind this ugly sound there was a serious problem.

My voice has been the hardest thing I’ve lost to MND. So much of your identity and personality is contained in your voice. It’s your means of engaging and immediately interacting with the world around you. I didn’t lose my voice overnight, it eroded over a year and a half. At the beginning I was slurring certain words, eventually all my words sounded drunk. Then the tone and pitch altered, the horrible groaning muffled tone made itself more prominent. The sound attracted curious ears, it was impossible to ignore. No matter how hard I tried to enunciate words, my mouth muscles just wouldn’t play along. Everybody tried really hard to understand my attempt at every word. Countless frustrating moments were experienced by us all – my tears were never far away as I struggled to come to terms with my latest MND crisis.

When I first got my Eye Gaze Computer I was excited and couldn’t wait to use it. By the second day, I hated it. It was just so hard to use. I ignored it for a few months until I eventually lost the power in my hand and could no longer use the communication app on my iPad. Until I had no means of communication except nodding my head I was forced to work with my nemesis.

The early days were tough, with lots of teething problems. You have to train your eyes to focus on the letters and turn off your peripheral vision. Sounds simple but it takes weeks of practice. Position and distance from screen, glare from sun and lights, medication, other people’s eyes and even wearing glasses all affect the Eye Gaze performance. [I eventually had to ditch my glasses, I’m short-sighted so can see the screen but everything beyond is a blur.] These obstacles are all equally annoying in their own right.

I like to prepare people in advance of what to expect with the Eye Gaze. It’s an unnatural and unsociable means of having a conversation:

* It’s slow, it takes me time to type out a response, I’m always a conversation behind.
* The eye trackers at the bottom of the screen that read my eye movements are extremely sensitive; if I look away they lose my eyes and can take up to 30 seconds to reconnect. In the mean time, I get frustrated, throw my head back and close my eyes, trying to re-establish connection. This happens numerous times a day.
* I have to concentrate on typing so I keep focused on the screen; consequently I don’t make as much eye contact and people presume I’m not listening. To make matters worse my neck muscles are weakening so I can’t even nod to acknowledge anymore.
* People stand beside me and read while I type, it’s a natural reaction but the eye trackers are so sensitive they pick up the other eyes and throw me off course, forcing me to reconnect again.

Those issues aside; once I sorted out the teething problems and everyone around me got used to the Eye Gaze, I began to love it. Now, I couldn’t imagine life without it. It’s an extraordinary piece of technology which gets many wows and looks of amazement. It has allowed my brain run free from my paralysed self. Without it I would be trapped inside my own body, unable to express myself, unable to talk to my little boy, my husband or my family and friends. I firmly believe I would be gone by now if it wasn’t for my Eye Gaze; it’s my portal to having a life.

Sharon x