MND is a rapidly progressing terminal illness, which stops signals from the brain reaching the muscles. The news of the diagnosis left Ruth, her husband Scott and their family devastated. Here, Ruth shares her story:
"In under five years, I’ve gone from being a busy, active new mum who loved doing things with my husband and daughter to being completely paralysed. It’s very lonely being trapped in my body with a fully functioning brain but the Hospice has become my safe place – somewhere with incredible staff where I can go and get support and be ill without people staring.
"The most difficult thing about having MND is knowing that I can’t walk my little girl to school, hug her, do her hair, read to her, the list goes on and on. Anna is five now and mentally, not having that interaction leaves me with a sense of pure guilt that she has to have a mum like me, it’s so painful and utterly heart-breaking.
"...the Hospice has become my safe place – somewhere with incredible staff where I can go and get support and be ill without people staring."
"I was terrified when I first heard of the Hospice through my MND nurse, but was overwhelmed by what a beautiful place it is and how unbelievably supportive, kind and genuine the staff are. I had a week stay when our bathroom was altered to a wet room and found that a very positive experience. I now do regular physio, mindfulness and complementary therapy sessions through the wellbeing service, all have helped me enormously.
"The Hospice has been so inviting to my family and been extremely helpful if my mum or Scott have rung for reassurance on anything. Scott has also had a positive experience through the counselling. We all depend on the service more than anyone or anywhere else.
"I wanted to share my story because I want more people to know how the Hospice has helped me to live rather than anything about death. I seriously can't say anything negative but just how it has helped me to live for as long as possible. All you need sometimes is to get away from the pressures of life. It’s a truly wonderful place."
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I didn’t for one minute think the kind of support I’ve had would ever be in place. People know about the care for patients, but nobody realises what’s available to the people left behind