Your stories

Awareness Week 2018 - Ray's Story

25th October 2018


Ray's Story...

How long have you been a member of Shine?

Just over two years ago, i left hospital in Jan 2016 with the diagnosis of Hydrocephalus.  I visited my local library and the librarian helped me on the computer to understand what it was and see if there was any support out there.  I was relieved to find Shine charity and registered straight away. At the time i wasn't functioning well at all, i could hardly talk or walk.

What was your main reason for becoming a member?

I really didn't understand Normal Pressure Hydrocephalus (NPH), i had a piece of paper confirming NPH and was talked to about fluid...that was as much info i i needed to know more... when I came across was a lifeline to print out the info, keep and learn from the beginning of a life changing journey.  I wanted to meet others with the same thing as me, i attended a pub lunch in Birmingham in January 18 and met a Shine worker and another lady which was nice.  I've since chatted on line to someone who also has NPH. I've printed all the shine leaflets out and given them to my family, GP and employer at the time to help them understand and help raise awareness of the condition.  

In what way/s has Shine been able to help you since becoming a member?

I learnt what NPH was, and feel if i need support its there.., its provided info for me to share with others to help raise awareness.  Safe little island that i can learn from people. Local services like the Citizens Advice Bureau doors were shut - i was alone.

Do you feel that Shine has offered a service which has met your expectations? has exceeded them

Do you value your Shine membership and if so, why?

Yes i do because you appear to be the only organisation that represents us....your website was invaluable to my family, my GP and ex employer

Can you see Shine being ‘by your side’ for the foreseeable future?

I would like to think so...although i understand the commercial, financial problems

In one or two words how would you sum up Shine’s services?



If you've been affected or inspired by Ray's story, you can help Shine to support more people just like him by donating £5. Simply text DOIT05 £5 to 70070, your donation will help pay for an information pack containing vital information for new members at a crucial stage in their lives.

Shine welcomed 772 new members in 2016, that's a total of £3860 before we've even began to deliver services. Your small donation could make a big difference.


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