Grantham support group founder raises awareness of rare brain disorder

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A woman who supports people with heart problems in the Grantham area is raising awareness of another condition suffered by her father.

Gini Dellow, who is the founder of Beat-It Grantham, which supports people with heart arrythmia, is turning people’s attention this week to PSP.

This week is PSP Awareness week. PSP stands for Progressive Supranuclear Palsy, a little known brain disorder.

It affects a small proportion of the population and causes havoc with balance, movement, vision, speech and swallowing.

Gini says it’s a cruel disease that leaves sufferers fully aware of what they are going through and if that’s not enough very little research has been done and relatively little published, leaving professionals often insufficiently informed about the condition.

The PSP Association believes just 4000 people are suffering from this disease in the UK with the majority of cases hitting the over-60s. Worse still there is no cure.

Gini said: “It’s a beast of a condition. Being a rare condition, so little seems to be known and it breaks my heart to see Dad inflicted with it. He’s gone from being a healthy, active gentleman to a chap who can’t get out of his chair without assistance, let alone manage any of the everyday chores that you and I manage every single day without thinking about it. He chokes when he eats and drinks and has lost the ability to do any of the things he used to love doing.

“It’s maybe too late for him, but if this raises awareness in even one other person and challenges them to get involved to increase awareness, then in time, maybe, we will also start to increase understanding and who knows, even one day eliminate this beast of a condition. That would be a dream come true!”

Gini added: “When they say it’s progressive, they mean it. Slowly over time it eats away at its victims rendering them unable to do many things that the rest of us take for granted. Imagine having a book beneath your nose so that you have no downward vision. You can’t see your food, you can’t read, you can’t operate anything that requires that vertical movement of your eyes downwards.

“Or consider standing up and walking. This again, is another crippling effect of PSP. Try and stand and you run a high risk of toppling backwards. Or how about having your personality changed involuntarily. PSP changes the way the front of your brain operates (the pre-frontal cortex) so that you become irritable and apathetic. Furthermore, this condition, hits the centres of the brain responsible for speech so over time speech becomes so slurred that it’s frustratingly hard to express even the smallest things or answer questions in a way that anyone can understand.

“PSP is a horrid condition. Patients are also high risk for choking and can literally inhale their food or liquid into the airways further increasing the risk of pneumonia which can be a killer and there is a whole list of other symptoms that can be present. At the present time nothing can be done to stop it gradually worsening – it is a living hell and heart-breaking to witness.”

The PSP Association are asking people to raise awareness of this condition by downloading a copy of their PSP Red Flaps for GPs and sharing it with their own GPs when they next visit (not to book a visit specially to do this).

Additionally, you can use social media to spread the message by tweeting @PSPAssociation and using the #PSPredflags as well as e-mailing the organisation.

To find out more visit www.pspassociation.org.uk, email redflags@pspassociation.org.uk or find the PSP Association on Facebook and Twitter (@pspassociation).