My name is Dani and I’m 33 years old. This is my story of how I walked into the hospital only a couple of months ago, and how I now spend every day in a chair. These are the events that led me to be diagnosed with Motor Neurone Disease.  

At the end of August 2018, I started to feel strange sensations like twitches in my muscles. I didn’t think much of it, and just carried on as normal. The following month, I was crouching down one day and when I went to stand back up I realised I was struggling and I needed to hold on to something to pull myself up. I knew this wasn’t normal, and it hadn't happened before. I went out for my birthday and told my brother what had happened. He said I should go to the doctors. On 30th September I had my first appointment about this, and they did some blood tests and sent me on my way. When I went back for my blood test results, they didn’t show anything wrong, but by this point my muscles were getting weaker. The doctor ordered more blood tests and I was referred to Airedale Hospital to a neurologist. I was also booked in for an MRI scan on my brain.  

By this point I could feel myself getting a lot weaker so I went back to the doctor and explained my concerns and that I was still waiting for the neurologist appointment. The doctor managed to rush along my referral and I got an appointment later that week.  

I went for an MRI scan on my brain and also a scan on my hips and thighs. I had a total of 4 hospital appointments in that week alone. After more blood tests, it was noticed that my CK levels were raised. This is a biomarker in the bloodstream called creatine kinase and it is often measured to diagnose and evaluate muscle damage. Because of these results, the neurologist thought I may have Polymyositis. This is one of the inflammatory myopathies, a group of muscle diseases that involves inflammation of the muscles or associated tissues, such as the blood vessels that supply the muscles. 

As I was waiting for more results, my symptoms continued to get worse and I had to take myself back to the doctors again. By the end of October I was getting weaker and weaker and had to stop driving. I was still trying my best to go to work, but this was getting much harder.  

I went back to the hospital in November and was put on a course of steroids which I started at the beginning of December to treat the suspected Polymyositis. By 10th December my symptoms had become so bad that I had no choice but to stop working. I was taking a high does of steroids at 60mg and they made no difference at all, I just continued to get worse.  

I got to the point where I couldn’t get upstairs by myself, my husband, Lee, had to help me up. Just before Christmas 2018, I called the neurologist and explained what was happening and he suggested I was admitted to hospital. Unable to admit defeat, I refused and tried to soldier on. I thought I was managing at home – just. Over the festive period, me and Lee tried to enjoy Christmas as best we could, and we really tried to make the most of it.  

I had an appointment with the neurologist on New Years Eve, and he explained to me that because the steroids clearly weren't working, he wanted to admit me to keep an eye on me and do more tests. I still couldn’t bring myself to go in and wanted to power through at home.  Lee returned to work on 2nd January and I just about managed to take care of myself for that one day, but the day after I couldn’t physically get up off the sofa, and I knew I needed help, so I finally gave in and was admitted to hospital where I stayed for nine weeks.  

I had all the tests you can think of, blood tests, muscle biopsy, lumbar puncture, you name it, I had it, all the while my symptoms becoming more and more severe.  The doctors tried me on other medications but I didn’t respond to any of it.  

To my confusion, I was referred to the chest specialist and respiratory doctor. This really threw me as I wanted to know exactly what was going on. I started to have anxiety and panic attacks because I didn’t know what was happening or why I was being referred to these doctors. One night I had a particularly bad anxiety attack and so the doctor agreed to tell me why they were doing these referrals. He explained that he didn’t want to give me the diagnosis until they had a second opinion, but as it was causing me so much anxiousness and panic, he told me that he suspected it was Motor Neurone Disease.  

I was speechless.  

I had no words, I was completely and utterly shaken up.

 

I didn’t know what to expect, but it wasn’t that.

  

At that moment, I felt my whole life had come to an end.  

We did get the second opinion, and they confirmed the diagnosis. I was more prepared for the news this time so it didn't come as such a shock. The Doctor asked what I wanted to do and I said I just want to go home. So I was fast tracked home, and now here I am, in my chair, learning how to live with MND.  

My Husband Lee has supported me throughout all of this, and he has been and continues to be amazing. I couldn’t have asked for more.  

The staff on Ward 5 at Airedale Hospital were incredible also. They kept me together when Lee couldn’t be there and I met some amazing people who I now consider friends. One of the nurses stayed with me during my lumbar puncture and even came in on her day off while I had my PEG fitted in my stomach. I struggled to sleep alone with the oxygen mask on so someone sat with me every night until I fell asleep. The staff work so hard and they do a fantastic job.  

Since coming home its all been a bit surreal. Its always busy here with carers coming in twice a day and  district nurses three times a week. I also have a Hospice nurse once a week and a Macmillan nurse too. I thought that when I left hospital I would be forgotten about, but this clearly isn't the case.  

One thing this whole experience has shown me is how many people care. Family, friends, work colleagues, its been overwhelming the amount of support I have received, be it with a visit, a card or even a text to say someone is thinking about me. 

I want to share my story to raise awareness of this disease, and to show people that it can happen at any age, to anyone. I want to be able to raise money and give something back to the people that are helping me to live with my diagnosis and say a big thank you to everyone supporting me during this life changing time.