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Meet Rowena Coote, who was diagnosed with Normal Pressure Hydrocephalus (NPH) in 2020. We asked Rowena to share her NPH journey… strength didn’t let me give up. You’re stronger than you think you are.

What was the journey to diagnosis like?

It started with symptoms of loss of balance and falling, short term memory, headaches, and nausea. I booked an appointment with my GP, explained my symptoms and she examined my gait. With NPH suspected I was referred to Derriford.

In 2020 after several scans, the Neurologist diagnosed me with NPH. 18 - 24 months later, I had a shunt fitted.

How did you feel about getting the diagnosis?

Initially terrified, thinking the worst, but after the diagnosis, I felt some relief. Anything to do with my brain feels terrifying. What will they do? How will they do it? I didn’t want anyone messing around with my brain, but Mr. Jeffrey and his team were amazing, and I had total faith in them. I surrendered and gave my body over to them. I thought, it’s got to be done and that’s that.

My partner was anxious following my diagnosis, so I kept my worries and fears to myself, and in some ways, it helped as I just had to get on with it. I had to be strong, as I have been my whole life and I am proud of my resilience.

How has Shine supported you?

I joined the NPH group – being able to speak to others going through the same thing as me helped. Others don’t really understand, so being able to share this with people that get it really helped.

I’ve joined some Zoom events. I enjoy being part of this group. Shine joined me up with another member with NPH, who is a little older and not tech savvy, so it was nice to be of help to somebody else.

More info & get involved

Shine provides support and information to people awaiting diagnosis, or having had a diagnosis, of NPH.

Click or scan this code to learn more

Shine also offers

1 1-2-1 support for individuals on an NPH journey and for their for carers/families

2 Access to a NPH WhatsApp group - a place to ask questions, share and support each other.

3 NPH Zoom events. Join us to listen to guest speakers, and gain insight and advice from the Shine team. A welcoming place to develop friendships. https://www.shinecharity.org.uk/ national-events/shine-events

4 Links to other members for peer support

Contact us on 01733 555988 or firstcontact@shinecharity.org.uk to find out more.

Challenges of living with NPH?

My short-term memory. I have occasional headaches, but nothing compares to what it once was.

Have things improved since you had your diagnosis? Yes- everything has!

Any message for others newly diagnosed with NPH? Try not to be afraid. There is light at the end of the tunnel. I didn’t know I could do this, but my inner

What is NPH?

Normal Pressure Hydrocephalus (NPH) occurs with a build-up of cerebrospinal fluid (CSF) in the brain’s ventricles. It is a condition which mainly affects people over 60.

NPH is associated with several symptoms, including difficulty walking, cognitive impairment/ dementia, and urinary incontinence.