Dan's story - My Motor Neuron Disease journey

My name is Dan, I am 52 years old.  My Motor Neuron Disease journey started around 2015, with a relatively early diagnosis in September 2016. At this point, I had no real concept of how MND would affect my life, whether slowly or quickly, nor to the full extent of its consequences on me and my family. 

I was introduced to Dove House at the start of my diagnosis. I attended a small, monthly support group, offering the ability to meet with others affected by MND. At the time, I remember thinking that I was very distant from other sufferers, not able to accept that this would be my journey.  It is unfortunate to say, but members who attended this group came and went, however the care from the support and nursing staff remained constant. 

Since the early days, and the realisation that my MND journey is very personal, and, in my case, was relatively slow, myself and my family did the best we could to get on with life.  For several years, this was largely manageable on our own, though we had regular and helpful contact with our MND nurse. 


Fast forward to 2024, and we are now in a very different place.  MND has taken all of my movement and my ability to breathe without support, and as a consequence, I spend all my time either in bed or in a chair.  The amount of care needed for this level of disability, and the prolonged length of time we have been fighting, had left us all feeling exhausted and in need of help.  It was at this point that we talked to Dove House about our needs. They were immediately receptive and understanding, suggesting several possibilities for how they could help.

It had been a long time since the early days of the support group, and this time Dove House offered us the opportunity for some respite care, allowing myself a couple of nights where I was well cared for, and, equally importantly, my family got some well needed rest. My anxieties and concerns about going into respite care were fully understood, and I felt very reassured by the answers to my questions as to how it would work for me.
During this short stay, I took the opportunity to enjoy complementary massage therapy and was able to have a bath, rather than a shower, for the first time in years. For somebody who lives seated or in bed, the opportunity to float without pressure, to feel warm, safe and relaxed, was invaluable.  And I took the opportunity to have a bath on both days!  As a consequence, the benefits being overwhelmingly obvious, this has lead to me regularly visiting Dove House to recharge my batteries, soothe a battered and aching body, and spend some time truly relaxing. This is a time, just for a brief moment, when you can forget that your body doesn’t move anymore. Lying still and accessing these therapies makes you feel, in a small way, just like everyone else.  MND is not just a physical condition, it takes a huge toll on your mental health. The ability to access these therapies and achieve a state of mindfulness is absolutely essential.

Dove House is a hospice; for some that term means only one thing – end of life care.  But it is far more than this – it is a place where people can go to get real, person-centred care.  For family members to feel, for a short while, their loved ones are getting the specialist treatment they deserve, so that they can have some worry-free rest.  It is also a place that loved ones can access support for their own health and wellbeing. It is truly a happy and welcoming environment, with dedicated and experienced staff, who work hard to ensure time spent there is rewarding and valuable, and I look forward to returning.