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Flavia’s Story

“Corso and I couldn’t live together, but we also couldn’t live apart either.”

Flavia is a carer for her husband, Corso, who is living with PSP. Flavia shares her experiences of being a carer and how PSP has affected them both.

Flavia said:

 “Corso and I couldn’t live together, but we also couldn’t live apart either. We have been romantically involved, off and on for most of our lives. I met Corso in New York when we were both 25. We fell in love, but soon realised we wanted to live life very differently.

“Corso moved to South America where he married and had three children. Year later we decided to give things another go and he moved to London to be with me. Not long after moving, he’d tell me that he occasionally felt dizzy in the street. He also complained that he couldn’t see very well.

She said:

“Corso was often tired and would spend the afternoon in bed. His family all experience issues with their ears so I took him to an ear specialist, thinking that may be the cause of the dizziness. It was a visit to the ophthalmologist with a detached retina that led to us to see a neurologist. Corso was finally diagnosed with PSP in November 2016. It was a slow process made harder by the fact that Corso didn’t trust doctors. Looking back there were changes to his character long before he moved to London, but we didn’t realise the significance back then.

“It is a cruel twist of fate that now we are finally together Corso has this cruel disease. But I love the guy, and I’m happy to care for him with love and affection. Every day I say to myself to just focus on getting through the day and not look too far ahead

“He can still walk and go up and down stairs with help but he is most definitely progressing. He sleeps a lot now and can be difficult to understand. We do have days when, for two or three hours he seems okay, but it never lasts. Other days he can seem like a zombie and we have to wake him up for all his meals. Generally I let him to whatever pleases him. I am determined to give him the best life I can.

“When he was diagnosed he didn’t want to accept it. I don’t think he really believed it. Sadly now he knows he will not get better. Thankfully we have good support from carers. Alongside the carers we have someone who comes three times a week to make him do exercises and two ladies who massage him. So, he is well entertained. He also knows I am here and that I supervise everything.

“At the same time, this level of support means I can go out shopping and not feel I have to rush back, because I know Corso is being well cared for.

“Corso’s sons are also wonderful and they take turns to come over. I am extremely thankful for this support. It gives me so much more than some time to myself, it gives me serenity and peace of mind, and that in turn makes me a better carer. We share caring for Corso so it doesn’t just fall on my shoulders.

“Corso has a big team around him and he is taken care of on and off by ten ladies, including myself and my little dog (who is a girl). I tell him never in your life did you think you’d have this! Ten women at his complete disposal, lucky man! While we take each day as it comes, I have also made sure to link into all local services and if I ever have a question I call PSPA’s Helpline. They are wonderful and know far more than the doctors. I have also linked in with the local hospice and Macmillan nurses. With PSP you do need to plan ahead, legally as well as medically in terms of recording a do not resuscitate order and sorting out Power of Attorney.

“I make sure Corso gets all the nutrition he needs. He has lots of fruit and porridge for his breakfast, followed by soup and a sandwich for lunch. For dinner I cook him cod or chicken with vegetables and a little sweet for afterwards. He is on very little medicine, so I make sure he gets all the vitamins he needs every day.

“I care for Corso with much love and affection. I do whatever I can to make his life as nice and comfortable as possible, but at the same time I don’t prevent myself from doing things. I also have equipment ready that we don’t need yet, but someday will. It is just about being prepared for the future. There is a team of us caring for Corso and after all these years I’m happy we are finally together, despite PSP.”