All Posts By

Lucy Lintott

My Story

Getting Confident with MND

I wish I knew when it started, maybe I could have stopped it. Part of me is annoyed that I let it get so bad. Another part of me is scared that I’ll never find it again. Sitting here writing and I can’t pinpoint when I lost my confidence or my voice. Many of you will not understand and that’s okay, I’m not 100% sure I fully understand what’s happened. I wish I could say I woke up and knew that a part of me had gone, but it didn’t happen that way. Have you ever just known something is missing or that it’s not right. It’s the same feeling you get when you’re trying to remember a particular word or the name of a song when all you have is the tune. Well for a long time I’ve had that feeling just sitting there, I’ve been trying to remember.

Since being diagnosed I’ve thrown myself into everything, mostly because I’ve wanted too and I’ve loved every moment of it. Please don’t think I’m ungrateful because I’m extremely grateful. The other reason I’ve thrown myself into everything is because I was hiding from accepting the new path I was on. The path where I have MND, Where my situation won’t get any better unless a miracle happens. I’ll never stop hoping for the day a cure is found. It’s hope and dreaming of a future free from MND, that keeps me sane. However, at the end of last year I stopped avoiding my diagnosis and I started asking questions about my MND. Some of the answers were hard to hear and some even harder to imagine but I’m so glad that I was finally brave enough to ask them. It was the first step to concentrating on me.

‘Muting’ my voice.

It’s crazy to think that for so long I’ve been scared that MND will take away my ability to talk. That it would leave me unable to make a sound. Turns out there’s something worse for me. The ability to talk but the inability to use my voice. Maybe that’s why I haven’t written in three years.

There’s a saying ‘if you want something done right, do it yourself.’ Everyone has there way, of doing things from cleaning to cooking. I’m no different but what happens when you can’t do it yourself? I’d known for a while I’d been ‘muting’ myself. I’d know someone wasn’t doing something correctly and instead of commenting and telling them I don’t do it that way or that’s wrong. I’d just sit there and say what I wanted to say in my head. Hoping that if I think it and it doesn’t sound too demanding I’ll say it out loud. Most of the time I’d leave them to do it there way as I’m just grateful that it’s getting done and it’s easier. It’s exhausting constantly explaining how you like things done. I need help with everything from getting up in the morning to going to bed at night. There have been times in the past when I’ve thought that I was a burden. Looking back now, I get it. I felt that I took more than I gave. I now know that isn’t the case.

I wish that was the only time I’d be ‘muting’ myself. Going out is always risky for my mood. It just takes one ignorant person to put a grey cloud over a situation. It’s unbelievable how many people in the customer service industry won’t make eye contact with me or will keep asking whoever I’m with the questions, even though I’m answering the questions. My family and friends have actually had to say ’She’s right there ask her yourself.’ or ’She’s telling you, Listen.’ When so many people dismiss you, you begin to dismiss yourself.

Recently I went to a restaurant with my sister and her girlfriend. It was my turn to order and I had to relay everything I wanted to my sister because the waitress wouldn’t take the time to listen to what I wanted or even walk around the table to hear me better. Normally I’d just ask the waitress to walk round the table but I didn’t want to put up with the awkwardness. After all of that, mine was the only order she got wrong. Situations like that made me embarrassed of being in a wheelchair and it made me think that I was unapproachable. I had to remind myself that it’s got nothing to do with me, It’s because they don’t know any better. People I’m with get frustrated and angry, and I don’t blame them. It must be hard to watch. With everything in life you get the good with the bad. I’m always so grateful to the people who open doors and go out of there way to help me when I need it. I’m most thankful for the people who talk to me like the human I am, the people who see past the wheelchair. Those are the people who keep me smiling and make the biggest impact in my life. Being in a wheelchair has made me realise how much a stranger can impact someone’s day.

Self-Confidence.

Self-confidence ’The feeling of trust in one’s abilities, qualities, and judgement.’ I’ve always known that confidence is something you constantly need to work on. Maybe that’s why I’ve always struggled with self-confidence, even more so now that I’m in a wheelchair. For me, my wheelchair and I have a love/hate relationship. I love how it allows me to get out and about. I love that it makes me independent in my flat. That’s where the love ends, the dislikes on the other hand are endless. My biggest dislike is that it makes me feel insecure, which I know makes no sense. How can an inanimate object make you insecure? But for me I’m more confident and comfortable out of my wheelchair: Fact! Which isn’t good for someone who now spends around 10 hours a day in a wheelchair, there’s no wonder I lost my confidence. So I did the only thing that I could think of to stop me feeling insecure in my wheelchair. I embraced it. I stopped transferring out off it every opportunity I got. It took me a while but when I started working on me everything fell into place.

Working on me

Once I realised I’d lost my confidence I started working on me and who I was now. I started to find myself again, my only goal was to get happy and healthy. So I went back to basic’s, I started to concentrate on what made me the happiest. Many of you will know my biggest love…food. Ever since I can remember, I’ve loved cooking and eating food, especially eating it. I always enjoy food more, when my family, friends or I have made it. For me there’s something so satisfying about cooking and eating food you’ve made. At this point I knew three things, firstly I was moving out in the near future, secondly I was a vegetarian and lastly I wanted to be body confident. I began by concentrating on eating healthy by cooking healthy lunches. I started off by cooking a spicy lentil and tomato soup, what a lot of you don’t know is that I’m a bit of a spice freak. I’ll put chilli flakes on anything and everything from poached eggs at breakfast to vanilla ice cream. After I made a big batch of the soup, I started to get up in the morning excited for lunch. To some people this will seem silly, but I hadn’t cooked in over 3 years and something so simple as getting to eat the soup that I made for lunch made me so happy. It felt as if I’d achieved something big. Straight away I knew I was on the right track and started to make more spicy lunches.

A year on and I’m tracking my macronutrients, cooking all my meals from scratch and meal prepping like a pro. I know what agrees with my body and what doesn’t. Turns out meat doesn’t, which is why I’m a vegetarian. I’m so much happier knowing what’s going into my body. Now in my flat, meal prep and planning my food for the week is now one of my favourite things to do every week. It makes me so excited for the week ahead. It also saves me a lot of time and means I can do more.

The next love of my life is exercise. At the start of 2017, when I started going to the gym, it helped me get out of my head. I’d put my country music on and cycle my little legs off. When I started going to the gym, I thought that people would just know I didn’t belong. I soon realised that no one cared. They’re all the there to get fit and happy too. The more I went to the gym, the more confident I became at the gym, so I started weight lifting and fell in love with it. After a year I’d seen a huge change in the amount I was lifting and some of the machines that I couldn’t do a year ago I can do now. So in January I decided that I’d start pushing myself more at the gym. I went from spending most of my time doing cardio to spending all of my time weight lifting. I’m now able to lift more than my own body weight with my legs. For a girl who can’t walk unaided, it’s pretty impressive. I’m now able to lift a third of my body weight with my arms. My goal is to be able to lift twice my body weight with my legs and lift my body weight with my arms. I have no idea if it will be possible but I’m going to have lots of fun trying. The stronger I get in the gym the more empowered I feel outside. For me the gym is my happy place, on a bad day I go to the gym and if I can’t leave the gym feeling happier, I know that it’s a bed day. I’ll do everything I need to do and curl up in bed and watch movies. Before the gym I’d have a lot of bed days in a week, since moving out I’ve had one.

Moving out!

I began to see the biggest change in my confidence when I started the process to move out. I absolutely love my parents. They’ve spent the last 4 years taking care of me and driving me around the country. My mum used to take care of me all by herself, it now takes the equivalent of three people to do what she used to do. When I decided that I needed to move out, I started the paperwork and knowing that at anytime I could back out made it less scary. I knew I wouldn’t back out as this was my next adventure. A way to get my independence back. It was a way back to my parents independence too. A way for my parents to be my parents again. In February I got an email off my social worker telling me that she’d possibly found somewhere in Elgin for me. Later on that week I was offered the place. Four months later and I moved into my new place. When I moved into my flat, something clicked in me and everything changed. I had a future, for the first time in 4 years I was looking forward. I was excited about what the future has to hold for me. Don’t get me wrong, at the start I was a bit lost, I had no idea what to do and I found the weekends when I didn’t have Zeus (My dog) really hard. Once I got into a routine and found the most amazing dog walker, everything changed. I love my new place and everything that comes with it. I love having games night with my friends every Tuesday. Every morning I wake up excited, especially on a Monday! I must be one of the few people who loves Mondays. I get to plan my meals for the week and get to go food shopping. Every week day I get to go to the gym and get to take Zeus on his walks. I know I find the little things that many people take for granted so exciting and I’m okay with that. It’s probably because I don’t have a job to go to, but then again I’ve loved every job I’ve had. I love the freedom my own place gives me.

Reflecting!

Looking back now I can’t believe I lost my voice or my confidence, but I get it now. At the time I was so lost and unsure of who I was and what I wanted, that I had nothing to say. Working on me has allowed me to start believing in myself again, which has given me back my confidence and my voice. I even feel confident in my wheelchair something I never thought would happen. Don’t get me wrong it still makes me feel insecure in certain social situations but even then I can talk myself round. I have a new happier lifestyle where I keep fit, eat healthy and laugh with my friends in my new flat. You never know I might even start dating…

Smile more and laugh always!

Lucy x

No Comments
My Dad's Story

Never in a Million Years

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!

No Comments
Travel

Going Down Under

On 20th August I started the 36 hour journey to the country that I said I’d never go to.

Its the home of the worlds most deadly animals and being the scaredy cat I am, before becoming ill I had no intention of tempting fate. The animals were no longer my biggest fear, leaving my parents and travelling half way across the world was. Leaving my safe haven was what was worrying me, In my house I can move about freely I know where to hold on to and where I can let go and walk freely. So whenever I go and stay anywhere, I hate it cause I lose that freedom of getting up and going where I’d like to.

No Comments
Travel

Italy in a Wheelchair.

I’d first like to say a massive thank you to Dani and Pippa for being strong and courageous enough to go on holiday with me!

I’d first like to say a massive thank you to Dani and Pippa for being strong and courageous enough to go on holiday with me! Especially to cobble central! I’m so blessed to have great friends like you guys and there’s no one else I’d rather have gone with. I know I’m not the easiest patient and I’m a lot of hard work, so I suppose thank you so much for putting up with me haha. I’m sure my Mum and Dad thank you too for bring me home safe and in one piece, although my Mum will probably make a joke along the lines of that you should’ve left me there, but she loves me really…

No Comments
My Story

Fear and Relationships

Each time I write I have to be willing to open myself up and with every post that I write I cry without fail, and I’m sure this one will be no different!

The best time for me to write is usually at night because I know no one will walk in on me crying and I can fully concentrate on my thoughts and feelings. It’s less painful for me if I write it in one go too, as I don’t want to dwell on certain parts, I’d just prefer to get it over and done with. That sounds like I don’t enjoy writing my blog, but I love it. Each post I learn something new about myself. I gain clarity once I’ve written it down and tried to explain it.

No Comments
My Sister's Story

My Ickle Sister

Hi! I’m Laura, Lucy’s sister. I just wanted to share my experience of Lucy’s diagnosis with you all.

I still remember the pain I felt when my mum finally told me what was wrong with Lucy. I remember it like it was yesterday. My mum had text me to say that she was coming to visit me in Dundee for the night, which I was really excited about, but I had to go to the cinema with my college class to see one of the worst films I have ever seen! It was so bad a bunch of us walked out half way through! Anyway, I finally got home after waiting for a bus that never came and having to call a taxi.

No Comments
My Story

Feelings Revealed

Recently I went to see a Maxillofacial Specialist about my jaw dislocating. Before every appointment I have been getting extremely nervous, but this was the worst one by far as I knew that the news wasn’t going to be good.

Sitting in the examination chair, I explained what happens to my jaw when it dislocates and how I get it back into place. The doctor had a feel around my jaw line before asking me to open and close my mouth repeatedly. He explained to me briefly how the jaw works normally before describing what was happening to mine. Apparently my ligaments and cartilage are stretched and that surgery is required to fix this, by either taking away bone or making dislocation harder my increasing the size of the bone already there. Wherever possible I shoot down the idea of surgery before I start to get upset, I’m determined to stay out of hospital beds and theatre until I really need to. If I felt my quality of life would be better, then I’d have no option, but I don’t feel that I’m at this stage yet. My jaw doesn’t cause me a great deal of pain and if it does, which isn’t often, it doesn’t last long. Surgery is a different ball game that I’m not ready for just now.

No Comments
My Story

People Involved

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…

No Comments
My Story

Telling People

The taxi ride to the flat was an emotional one, I spent the ride looking out of the window while trying to fight back my tears with a few escaping now and then.

Finally back in my room, I told my dad that I just wanted to go to sleep because I didn’t want to talk about my feelings or the diagnoses. At that moment in time I didn’t fully understand the seriousness of my illness, all I wanted to do was research what MND entailed but with my dad by my side I couldn’t do it. I thought it would be selfish and inappropriate, as I wasn’t too sure if he wanted to learn that information just yet. I texted my best friend Kim Goodchild to get her to give me a ring when she was free and as she was in a lecture we just texted back and forth for a while as soon as she got out of the lecture I told her I had MND. Kim knew that I’d visited the doctors several times as well as the neurologist and been in hospital, but I hid the majority of my symptoms from her too.

1 Comment
My Story

Diagnosis

I, Lucy Lintott was diagnosed with the incurable terminal illness known as Motor Neuron Disease (MND).

I’d known for a while that something wasn’t right, as I started losing strength in my left hand, and then my balance and co-ordination started to deteriorate. I was walking into things and falling over easily and more often. I knew I needed to see the doctor, but I was also aware that if I was diagnosed with anything before going to work in America for the summer, that my chances of being able to go would be minimised.

After coming home from America, I realised that I was having difficulty opening my left hand for long periods of time, walking on my toes on my left foot instead of using my whole foot, my muscles would vibrate viciously when I was seated or standing, I started to just fall over randomly even when I was on flat ground, my bladder functions were becoming urgent and my walk was becoming slow and stubbling.

No Comments