Motor Neurone Disease care – Simon’s story

Motor Neurone Disease Service at Dorothy House

Our Motor Neurone Disease (MND) Service is jointly run by the Hospice and the RUH.

The Motor Neurone Disease care service offers a single point of contact and ongoing support for patients with MND, their families and carers. Our MND Specialist works mainly in patients’ homes, but also at the RUH and the Dorothy House Winsley site.

Simon was diagnosed with MND at the age of 40 and this is his story.

Receiving diagnosis

"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. When Dawn came round and 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.

Family Services at Dorothy House

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” with a Dorothy House volunteer, 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 the speed at which MND progresses means that you struggle mentally to prepare yourself for it.

Planning ahead and writing a will

Dawn, the specialist practitioner, has raised things like my will and advance directives early - 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, 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."

Read more about our Motor Neurone Disease care service here.