Tuesday 19th November 2013 is the day I will never forget, it changed my family’s life forever.
We knew that there was something wrong with Lucy, but never imagined the enormity of what was coming our way. The problems Lu was showing had us worried, we speculated and googled what could possibly be wrong with her.
When the appointment for Lu to go for tests at the Glasgow southern general hospital came through to see the consulting Dr Stuart Webb, Lydia googled him. She wanted to find out about him, his speciality was Multiple Sclerosis. Now MS was added to our list of conditions to worry about.
The first appointment I joined with Lu was on the Monday morning for some tests, scans and lumber puncture. By the early afternoon we where told we could go home, but to come back the next morning for some more tests. We where worried but we where in good spirits laughing and joking, while watching The Big Bang Theory on Lu’s laptop between the test. Thinking that whatever it was could be cured with some pills or a routine operation and Lu would soon return to her new life in Glasgow.
We came back to the hospital the next morning with Lu’s laptop and the next series of The Big Bang Theory to watch between appointments. After seeing a physiotherapist and a speech therapist, Dr Webb entered the room. Flanked by a female and a male nurse, they brought in chairs and sat down. They then began to tell us that they had done all their test’s. Dr Webb asked me if I thought I knew what the problem might be, at this point I started to feel nervous. I told him that we had discussed the symptoms and thought it could be multiply scleroses, a brain tumour, or some kind of stroke. He paused for a second and then said its none of them. It’s Motor Neurone Disease. I felt physically sick and my heart started to pound. Lu didn’t know what it was, but I knew exactly what it was from reading Fernando Ricksen’s story a couple of weeks earlier. Dr Webb then proceeded to tell Lu that, it is incurable, there is no effective medicine to help control it. 90% of people die within the first 3 years. These facts kept ringing in my ears also with the sound and vision of Lu crying, I have never felt so helpless. The doctor just delivered a death sentence to my youngest daughter. You have no idea what I would of done to swap places with Lu. I never felt so numb, I started to think that they must have made a mistake but was told that all other possible illnesses had been ruled out, it was in MND.
We where asked to return to the hospital the following day, with all of our family to meet with Dr Gorrie who specialises in MND. He’d explain and answer any of the questions we had about MND. We where free to go, as we left the hospital I felt that this can’t be right. Our Lu’s only 19, I wanted to go somewhere and appeal this injustice, complain or get the decision reversed. The truth of it was that’s life, there’s nothing that can be done.
I found it hard to look at Lu without my eyes filling with tears. There was nothing I could say or do to comfort her. Nothing to make this go away. Nothing to make things better. We made the journey back to Lu’s flat to break the news to the rest of the family. After we called my wife, Lydia and told her the news. She agreed to pick up Ross & Laura and come to Glasgow the next day.
Still in a state of shock we tried to compose ourselves and strangely enough Lu felt hungry. Food was the last thing on my mind, we set off down the street in search of a place to eat. We ended up in the ubiquitous Chip. It was late afternoon and we were the only customer in the place which I was grateful for. We ordered our food and I stared at my cutlery, with the events of the day raging through my head. The doctor’s words 90% of MND sufferers don’t make it past 3 years just kept sounding in my head, over and over again. How could this be possible? Our Lu may only have 3 years to live and will end up totally paralysed.
What happened next will stay with me for the rest of my life. Lu looked up at me with a smile on her face and said ‘I wish I had MS now’ and laughed. I was absolutely amazed at her strength. That she could make a joke of her situation. Although I really wanted to cry, I couldn’t help but laugh with her. From then on, I was to look for the positives, to help and support Lu. The last thing she needed to see was her Dad filling up with tears every time he looked at her. I knew I had to show the strength that she had shown me. It’s her strength and determination to make the most of the time she has left that has been the inspiration for our family, to be positive and enjoy the time we have left with our Lu.
The fact is no one should have to suffer such a cruel and debilitating disease such as MND. It devastates family’s and leaves sufferers no chance of survival. No matter how hard they fight against it. Positive mental attitude can help a lot of people get better and recover from life threatening conditions. Whereas when you have MND you just have to make the most of what time you have left. That’s why it’s so important to understand the disease, and find a cure. It doesn’t discriminate against anyone. Never in a million years would I have thought that someone I love would become ill with such a horrible condition. Let alone our Lu!