My name is Ayomi and I’m sharing Pauline’s story on her behalf. Pauline and her husband John have been a part of my life since childhood, I hope you can take a few moments to read her story. Any donations, no matter how small, would mean so much.

Pauline was born in 1947 and in 1995 she was diagnosed with an incredibly rare neurological condition called Primary Orthostatic Tremor. This condition means she cannot stand still for extended periods as her legs begin to shake violently as soon as she stands, causing her to fall within seconds. To move from one place to another she must always hold onto something. Her home has been adapted with grab bars to support her movement and she is unable to go out alone without assistance.

After numerous tests, Pauline finally received her diagnosis in Oxford. Even the specialist who diagnosed her had only seen one other case in his entire career. Sadly, she was told there is no cure and she would have to adapt to life with a condition that affects nearly every nerve and muscle in her body (except her face). She also lives with constant, severe back pain due to the ongoing tremor.

Outwardly, when seated, Pauline appears well. Unlike conditions such as Parkinson’s, where tremors are visible, Pauline’s tremor is internal and significantly faster, making it less noticeable but no less debilitating.

Although doctors have described her as “unique,” Pauline does not want to be unique. She simply wants to live a normal life, to stand at the sink and brush her teeth, to cook, to hang out the washing, to go shopping or even to stand in a queue. These are things she has not been able to do independently for over 30 years.

Recently, Pauline suffered a fall while trying to get in and out of the bath, landing painfully on her coccyx. Even with assistance, bathing has become unsafe.

We are now hoping to raise funds for a walk-in shower with a seat, which would make a huge difference to her safety and independence. While this may seem like a small change, it would have a life-changing impact for Pauline.

After living with this rare condition for so many years, Pauline hopes that by sharing her story, she can raise awareness and perhaps help others facing similar challenges.

Thank you so much for taking the time to read her story and for any support you are able to give - all money will go towards a wet room for Pauline!