MK-based charity raising awareness in news-style programme

The programme was produced by ITN Business in partnership with The Brain Charity to highlight the positive efforts being made in healthcare and science to support people living with a neurological condition and their loved ones.

UK charity PSPA became involved in the production to help raise awareness of rare neuro-degenerative conditions; Progressive Supranuclear Palsy (PSP) and Corticobasal Degeneration (CBD).

The two conditions affect approximately 10,000 in the UK.

The programme features a couple the charity has supported, Bruce and Neda, who share their personal experience of living with CBD. PSPA’s Chief Executive, Rebecca Packwood, and Neurologist and PSPA Trustee Dr Boyd Ghosh, also feature to discuss delays in diagnosis and accessing essential support and care.

Milton Keynes based PSPA supporter, Lisa Rodriguez, identifies with the experiences shared, as she was diagnosed with CBD in 2017.

Lisa says: “Before I was diagnosed with CBD I was the life and soul of every party, often hosting dinner parties or barbecues and always being a bit of a devil especially where drinking and larking around was concerned.

I am a mother to four beautiful girls and also brought up my nephew until he was 23 years old. I worked full time at a nursery. So, life was busy.

Then I started falling off my step during my gym class, experiencing vertigo, and my right arm and hand seemed to be impaired somehow, I would hold onto cups or door handles and not be able to let go.

When I started choking on my food, I was sent to the speech and language therapist who referred me to a neurologist. It took three appointments and multiple investigations, including an MRI scan, to receive the diagnosis of CBD.

I am still working, albeit part-time, but socially I have retracted. I cannot cut up my own food and my word finding is a problem, so talking can be a slow process and I can say the wrong thing. I regularly attend physio appointments to help with my mobility. But it can be a challenge.

I’d love for more people to know about CBD, and understand the challenges I face.”

Rebecca Packwood, PSPA Chief Executive, said: “We’re excited to be involved in the creation of the programme Inside Neurology: Our Unique Brain.

As rare conditions, PSP & CBD are relatively unheard of even among the healthcare community. So, the programme is giving an amazing opportunity to not only highlight the conditions and how they can impact on family life. But also, the challenges people like Bruce and Neda, and Lisa, face in terms of getting a diagnosis and accessing relevant support and care.

We hope the programme helps raise awareness of the conditions and also how PSPA can help.”

You can watch the programme Inside Neurology: Our Unique Brain from 14 December on ITN Hub: https://business.itn.co.uk/programmes/inside-neurology-our-unique-brain