Your stories

Hydrocephalus Awareness Week 2022 - Jacqueline's Story

7th March 2022


Jacqueline's Story...

"I cannot say how grateful I was to have someone who understood what I was going through."

What was life like before you received support from Shine?

"In 2013 I had a routine GP appointment and mentioned headaches which I had had for some time, but put down to stress. I was a qualified nurse, social worker and practice teacher and my job as deputy manager of an adult mental health team was demanding.

I was sent for a scan and was shocked to be told I had chiari malformation and hydrocephalus. I was packed off to the Walton Centre and had ETV surgery. I was going through leaflets some weeks later and the neuro support centre in Liverpool put me in touch with Shine."

How has Shine supported you?

"I cannot say how grateful I was to have someone who understood what I was going through. A Shine Support and Development Worker supported me through occupational therapy appointments and was a great help with my PIP application. Debi has helped more recently with a supporting letter in support of my recent health change for my PIP claim. I have since had further surgery and now have a shunt. I enjoy the social Zoom activities the Shine Support and Development Worker Debi has organised especially throughout the last 2 years and during lockdowns. It is hard for everyone but knowing that there are people there who care and understand is super."

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