Lynn’s Story– “Living with PSP

Lynn – “Living for the Day”

A deterioration in her hand writing was the first indication for Lynn Barlow that there was something wrong with her. That was five years ago. Today Lynn (65), from Manchester, is battling the neurological condition PSP (Progressive Supranuclear Palsy). PSP is a degenerative brain disease which affects eye movement, balance, mobility, speech and swallowing. Over time it can rob people of the ability to walk, talk, feed themselves or communicate effectively, though they usually remain mentally alert.

Lynn’s first diagnosis was for Parkinson’s Disease, a common occurrence for people with PSP as initial symptoms are very similar. Lynn was prescribed medication for Parkinson’s but felt her condition deteriorate further. It was two years later before she received the diagnosis of PSP.

“When I was told this it was a shattering blow to find out I had a disease for which there is no medication or cure,” said Lynn. “I was also told I would probably be in a wheelchair within two years.” Prior to her diagnosis, Lynn had been a very active mother of two, who regularly visited the gym, did yoga and Pilates and was the financial director for the family business.

Unfortunately PSP has slowly deprived her of her fitness and her independence, and she can no longer drive, visit the gym or go shopping. But ever the fighter, Lynn did complete the Women’s 5K Hyde park Challenge in London last August with her daughter Sian (33).

“I look at my mother with great admiration. I can’t believe how brave she is and how much of a fighter she is, “said Sian, who lives and works in London. “She does a really great job of living for today.” Sian and her father and brother have had to learn to adapt as PSP has taken over Lynn’s life. Sian’s father is Lynn’s main carer, but Lynn is hanging on to as much independence as she can.

“Even though I have this terrible disease I still try to keep as fit as I can with walks and some personal home gym equipment,” said Lynn.  “For the future I just try not to think about it and try to stay positive and live for today. I am still resisting that wheelchair with a stubborn desire to prove the doctor wrong!”

Information Courtesy of The PSP Association