A Milton Keynes mum-of-five who is gradually losing the ability to walk, talk, eat and see is still campaigning to help others with neurological conditions.
Lisa Rodriguez 48, was diagnosed last year with Corticobasal Degeneration (CBD), a rare disorder that causes nerve cells to die in the brain.
A nursery manager, former town councillor and school governor, Lisa has vowed to fight for as long as she is able.
The Bletchley mum said: “I know CBD is life limiting and I will progressively get worse. All I can do now is stay positive and make the most of my life. I am also determined to do as much as I can to raise awareness of CBD and help push forward research into the condition.”
This month she opened the new national headquarters of national charity PSPA at Margaret Powell House in Midsummer Boulevard, Central Milton Keynes.
The charity, which picked MK because of its excellent strong infrastructure and economic growth, is dedicated to supporting people living with two rare neurological conditions, Progressive Supranuclear Palsy (PSP) and (CBD).
It also raises cash to fund funding world-class research into PSP & CBD in the hope of eventually finding a cure.
Lisa said: “Having the national charity now on my doorstep makes me even more focused to do as much as I can.”
There are no effective treatments for PSP & CBD, but there are many therapies that can help manage symptoms .
The average life expectancy is around seven years from onset.
Lisa is already having to scale down her day to day activities as her disease progresses.
“But I remain determined to fight the condition and use my experience to help improve NHS care for others affected,” she said.
As the nerve cells in the brain deteriorate and eventually die, patients experience difficulties in leading to difficulty with balance, movement, vision, speech and swallowing.
Around 5,000 people are known to be living with the conditions in the UK, but this number could be doubled as many are misdiagnosed with other diseases, says the PSPA, which is the only charity offering support and information.
For more about PSPA visit www.pspassociation.org.uk