Jo's Story - Awareness Week 2017

Jo Pugh has a full on life. At 38, she is a Project Manager in the NHS, teaches Spanish privately, has a busy social life and is also a Shine volunteer.

Jo was born with spina bifida. Her parents were told that she was unlikely to walk and was likely to be ‘very dependent’ on them.

Jo has a degree in Hispanic Studies. She spent a year teaching in Spain and teaches Spanish privately. I love teaching and the year in Spain was the best year of my life. I lived with four Spanish girls and was fluent by the time I left! I’ve taught 6 year olds to people in their mid 70s looking to retire in Spain - it’s all about helping people.

About volunteering

Jo has volunteered for Shine for nearly 11 years in a variety of roles, latterly with the admin / information services, signposting people to helpful information.

‘I love it - no two days are the same. It was important to me to volunteer for something closely linked with my personal experience. I’m keen to help people. I enjoy variety and have gained and used different skills. I’ve made good friends too. I think Shine’s plans to develop a structured volunteer programme sound very beneficial - to attract and retain good people and encourage more people to get involved It’s a nice way of giving back too. I’ve had a lot of medical intervention in my life, so I can give a bit of myself back.

I think Shine is an exceptional charity, with a great vision, values and ethos.

Jo has extensive project management experience in the NHS.

‘The aim of my work is to relieve pressure on the system, whether it’s GP primary care, maternity, or A&E... I also set up a helpline to provide information and support. It’s all about how we provide alternative care so that people get the support they need without having to come here in person. Managing patient flow to prevent bed blocking, and reducing hospital admissions. I’ve also worked with care homes to train carers in better management to reduce the number of falls, UTIs, pressure sores and respiration problems (the four main reasons residents are admitted to hospital) to reduce the number of hospital admissions.

I’m also working on a falls pilot - I chuckle that they couldn’t have picked a better person! SB affects my balance, so I can’t stand upright on my own - I have to hold onto something.

I’m an expert as I fall over a lot - I’ve learnt how to fall so I don’t hurt myself.

I have a really active social life. It’s hard to balance tiredness and pain with all I want to do, but I have amazing friends - they are pivotal to my life.

I live in a bungalow in Stamford. I used to live in a Victorian terrace, with no allocated parking so I had a long walk from the car to home. Mobility issues caught up with me and I had to make the move. That was a big life change and took some getting used to; I used to be surrounded by upwardly mobile thirty somethings - now, at 38, I’m surrounded by people in their 80s. But it was a practical step and important for my whole life balance.

I had very supportive and positive parents. They had a positive mindset, saying: ‘It’s not what Jo can’t do but what she can do…’ I owe them a lot; they laid positive foundations very early on. I can find it hard to stop thinking I can do everything, but I wouldn’t have it any other way!

My parents were pushed to put me in a special school but fought hard and I went to a normal primary and secondary school and to university. I had a support teacher to help out with physical stuff at primary, such as continence and swimming, and at university I chose a room with a bathroom (these days they tend to be ensuite anyway) but didn’t really need any other support. I was so determined nothing would stand in my way!

My God-daughter, Frances, is my role model. She is seven, has muscular dystrophy and is so positive. I can see a lot of me in her. I also really respect the Queen. At 90 she still walks down the steps on Remembrance Day; her commitment and dedication are amazing.

A message to Shine members?

Never give up. Remember that your spina bifida / hydrocephalus is part of who you are. As challenging as my life is, I cannot imagine my life without spina bifida. Somehow it’s made me who I am. I think that if you can reach a place of acceptance about your condition that’s helpful. It’s good to expose yourself to new experiences and new people too - I’ve gained so much from volunteering. It’s all about balance.

A message to the public?

There have been huge steps forwards in disability awareness, but we still need to change attitudes. Sometimes parents physically drag their children away when they see me approaching in a supermarket. I can hear the children asking ‘why is that lady walking like that?’ but the parents pretend it’s not happening. With my family and friends I make a point of being very open and explaining that my legs work in a different way - the children accept that.

We need straightforward conversations to change mindsets.