Motor Neurone Disease – Simon’s story

Last year, Simon was diagnosed with Motor Neurone Disease (MND) at 40 years old. In May 2023, he started to notice twitching in his left shoulder and weakness in his left hand, which quickly progressed. Within a month, Simon had been clinically diagnosed with Motor Neurone Disease, which was supported by an EMG.

Following diagnosis, Simon has since been supported by Dorothy House. The Motor Neurone Disease (MND) Service is run jointly by the Hospice and the RUH. The service offers a single point of contact and ongoing support for patients with MND, their families and carers.

It also offers specialist information, sign-posting, support and guidance from diagnosis onwards. An MND specialist practitioner works within the RUH, Dorothy House and the community, and can visit patients in their homes.

Here, Simon he tells us about his MND journey so far:

How it began

Initially I didn’t think too much about it because we all get twitches once in a while. After it started spreading, I did the classic thing of googling my symptoms, which was obviously terrifying. From that point on I was convinced I had MND, even if no one else around me was. As it slowly got worse, I became more certain that I knew.

The day of diagnosis was probably the worst day of my life. It was a very difficult message to receive. I went into crisis mode; you think that you’ve got weeks to live.

How Dorothy House is supporting Simon

For six months or so I crashed, but a whole support team at Dorothy House swooped in to pick me up. Day by day, things started to improve mentally, even as my physical health was declining.

When the specialist practitioner came round, she mentioned she was from Dorothy House, I wasn’t interested because I thought a hospice was a place you go to die, and I didn’t want to die; I wasn’t planning to any time soon. But it turned out that the services offered at Dorothy House were hugely helpful to me and my family, and will remain so up until this disease has played out. It’s really an ‘in life’ service as much as an end of life one.

We’ve taken advantage of a number of the services they offer. My wife received counselling here and we’ve seen a child psychologist to help us work through the impact on our son. We’re making creative keepsakes together as a family, where we’re building something physical to store memories in of all the things we love to do.

I’m also doing Life Stories, which is another service which helps me record important moments from my life, for future generations. Some people store pictures or memorabilia in a box. For other people, it’s about music and playlists and recordings. I’m going to try and make a series of videos, particularly for my son, so that he learns more about me and my views on life in case he has questions later on.

For me, it’s been really helpful just to be around people who understand the condition, and have set up a gorgeous environment full of really fulfilling things to do to help me work through it.

Motor Neurone Disease awareness

It’s a strange disease because you think MND is very rare. In reality it’s not; about 1 in 300 of us will get it at some point in our lives. The problem is that there are not many of us around because it’s a quickly progressing disease.

I was lucky enough to go and see a neurologist privately who confirmed the diagnosis. So for better or worse, I didn’t have a long period of not knowing what was going on, whereas many people do. It’s really hard to be in limbo, where you’re thinking it might be MND, but it could be something else. To shorten that period of uncertainty would give people clarity on how to live the rest of their lives. There is definitely a lack of awareness about MND; what it does, how quickly it progresses, and the physical limitations it puts on its patients.

On average, people survive 2 to 3 years, but it can be months, even decades. I’m a sort of medium to slow progress. It’s really important for me to keep my independence for as long as I can, building memories with those that I love, while I still can. I want to keep planning exciting adventures that I can still do, trying to stay one step ahead of the progression, so that I’m not left stuck indoors and unable to get out or, unable to make those memories that are so important to me.

I think you have to hope for the best and to keep planning for the worst.

The practical part

The speed at which MND progresses means that you struggle mentally to prepare yourself for it. Dawn, the specialist practitioner, raises things early, like your will and your advance directives, decisions that need to be made around assistive technologies and interventions that can help prolong your life.

There is a lot of admin, there are a lot of decisions to make and lots of paperwork to complete. But I’d rather be doing it while I have time to think about it, rather than as an urgent issue which suddenly needs to be solved. That is what Dorothy House has helped us navigate.

I always feel better after having come to Dorothy House, no matter what it is for, and knowing that there is going to be support for my family afterwards.

Your initial thought is that it’s just an end of life service. Actually, it is a holistic journey to support me and everyone connected to me throughout, which is really wonderful.

Simon’s advice for others diagnosed with Motor Neurone Disease

There is no right or wrong way to go through an MND diagnosis and journey, but here are some of my tips:

• Don’t compare your journey to other people’s.
• Lean on the support that you are offered.
• Plan to do things that are not related because it does tend to take over your life once you receive the diagnosis.
• Do a few fun things every week if you can.

A tribute to Rob Burrow

Rob Burrow, a top-flight Rugby League player who was diagnosed with Motor Neurone Disease in 2019, sadly died on 2 June, 2024. He was 41 years old.

Together with his friend Kevin Sinfield, Rob raised millions of pounds for clinical research and patient support services. He waved the flag for all of us with MND, whilst going through the horrors of the disease himself.

From the moment I heard this poem in a film many years ago, it stayed with me. I thought it was breathtaking. I hope it’s a fitting tribute to the legend that is Rob Burrow.

The importance of hospice services for MND patients

Dorothy House is hugely important because it’s that sweet spot of the space between the medical professionals and a homely environment that’s caring and supportive. No one wants to end their lives in hospital, most of us would want to be at home, but that may not always be possible. So having a service that kicks in from the moment you get the diagnosis right through to the end is vital.

To find out more about the MND service run jointly by Dorothy House and the RUH, please click here.