This is me, not MND (Motor Neurone Disease)

Yvonne shares her journey of being diagnosed and living with Motor Neurone Disease

My life changed forever on 13/05/2021, and I never saw it coming. 

Although 2020 was the year of lockdown, it was a glorious summer for me. I had some soul-searching to do; I had separated from my husband, I was close to completing my degree in Health and Social Care, and I was ready to step out of my comfort zone and make a career change. I decided to travel for a few weeks while lockdown had been lifted and before looking for a new job after taking voluntary redundancy from my job of 22 years in 2019.

Covid made it challenging to find work. A friend of mine told me there was a temporary position available in the organisation I recently left. I was reluctant, but I knew I could do the job well. I was in the post for about one month when I noticed a change in my speech. Sometimes it would feel like a big effort to pronounce certain words. I ignored it for a couple of weeks until I went out for a meal with work colleagues who said they said they could hear it too. 

I made an appointment with my GP, who sent me to A&E immediately as she wanted to rule out a stroke. A&E gave me a brain scan and sent me home when everything seemed normal. I had two more rounds of tests with different professionals, but everything came back clear. I needed answers; I was preparing to embark on a new career, a mother of three young adults, and finally ready to live my life after six years of studying part-time around a full-time job. 

I became very anxious that I would lose my job as my speech started to affect my work. My anxiety turned into despair and depression, so I begged my GP to contact the neurologist to speed things up. I needed to make everything okay.

I finally got the call I was waiting for eight months. They asked me to go into the city to the National Hospital for one final examination. “Absolutely”, I said with excitement as I would finally get some answers and could get on with my life. “Is there anyone you would like to bring with you?”, “Nah, I’ll be fine”, I honestly thought. Off I went to my appointment the next day.

I was not nervous in the slightest. A smartly-dressed consultant called me into a room, making me feel comfortable. She began examining me while talking to me at the same time. When she finished, she sat down and told me in the nicest possible way that I had bulbar-predominant motor neuron disease. I felt like she was suddenly speaking in a different language, so I asked if I could record her while she explained everything.

I was in total shock. My friend called after the appointment and booked me an Uber to her house. By the time I got there, I had become quite pragmatic and decided I would not tell my husband or children until I finished my degree and celebrated my 54th birthday two weeks later.

I went to bed and drifted into a deep sleep but woke up at about 3 am to face my worst nightmare, the reality of my diagnosis. I became very angry and began speaking to God, asking him why he could let this happen. I cried into my pillow so my son would not hear me, and before I knew it, it was time to get ready for work. 

I logged on but could not stop crying. By midday, I called my manager and said I had a terrible migraine and needed to rest. But I was not about to rest; I called the hospital to get some questions answered. I rang the nurse practitioner and questioned her very sternly. “I don’t understand how the doctor made such a diagnosis by examining me. She can’t be right. She doesn’t even know me. She can’t expect me to change my life just like that.” They told me the doctor was a specialist and that it was highly unlikely that she was wrong. I slammed the phone down and cried into my pillow until 4 pm. I was exhausted, but something within me told me to stop crying and go for a walk.

I was somehow at peace. The sun was shining, and I felt in control again. I walked into a shop and suddenly bumped into my husband. I was helping him find something when I fell apart. “What’s wrong, Yve?” he asked me, but I couldn’t talk [because I was] crying so much. I finally told him about my diagnosis, and he hugged me and said, “you are still Yvonne. This disease does not define you. You are going to be just fine. I got you”. At that moment, I felt liberated, like I had a purpose. My life was not over. 

When I was diagnosed, I didn’t see anyone that looked like me, so my purpose now is to raise awareness, especially amongst people of colour. I will continue to live. I will choose to be happy, I will choose to enjoy life, and I will continue to be me. Yes, I have the odd down day, but who doesn’t? 

Since my diagnosis, I have worked with global technology giants on new inventions that will make a difference for people living with MND. The first of these projects was called I will always be me, the world’s first e-book that banks your voice, and more recently, I have worked with Google to test their brand-new product Relate, launching in Beta on 2 December 2022. Now, I’m sharing my story with you. My diagnosis does not define me. My name is Yvonne, and this is me, not MND.