April 7, 2019

Progressive Supra Nuclear Palsy (PSP): Life with PSP

Welcome to this honest, heart warming blog post from a follower called Rachel, who has written about her Dad, who suffers from PSP.

I sit writing this as I watch my dad sleep. He sleeps a lot now.

The effort and routine of the morning routine and breakfast takes so much out of him that he will sleep for two hours soon after rising. Soft music plays, and he sits cosy under his blanket. I can smell the coffee I have brewed, and the house is warm.

At times I am overwhelmed by how much I miss my dad. Even though he is never far away from me. So much of him has already gone. Over the last two years his condition has gradually and insidiously taken his mobility and increasingly his voice. For so long his physically instability was at odds with what was going in his head. He still had the same sense of humour and knew exactly what was going on. But now even that is eroding. Our hearts are breaking. 

As a child psychologist I have worked with so many children who have had to endure horrendous childhoods and live through appalling situations. I always knew I got lucky with my dad. From humble beginnings his intelligence, warmth and kindness led him to live a successful and full life.  He was gentle and hilarious in equal measure – always the first up dancing,  first to put his hand in his pocket and the first to help if he could. As a grandad, no-one came close – just ask his five adoring grandkids. He could always be found with toy cars or paints, playing on the floor with them (even when he struggled to get back up). They are the apple of his eye and his pride for them still shines out of him like a sunbeam whenever they’re around – which they are, often. Because how can you not be around someone who brings people together the way he always has.

There are so many things I admire about my dad. One of the things I admire most is the way he manages the challenges he has faced in his life. And there have been many. In many respects what those challenges were does not matter – what is important to know is that he has faced each challenge with humility. He is always humble and curious about what he is learning. In the past he would pour over books or the internet; trying to understand and to learn. Being reflective and seeking out discussions to understand your point of view. And unlike many men of his generation he was always willing to change his view, or admit he was wrong. Shaping him into the person he became and who we all loved and respected beyond measure.

Life with PSP is becoming unbearable for him. And for all of us too. It has gradually taken away his freedom. He now cannot move independently, eating is becoming a struggle and we have watched him stop breathing more than once. He doesn’t talk much now and PSP I know, only has more cruel blows which he must endure. So little is known about this disease and research in terms of treatments or prevention is beyond slow.

But every time we feel we cannot bear any more, we keep going. There is no other choice and we will not let him down. We love him and treasure every moment we have with him so we will continue to create more happy memories. Bring the fun to him. Share another family meal. Sit in the garden and feel the sun on our skin. Share a funny story and laugh ‘til we cry. We do what we have always done.

As you may be able to tell, when I started writing this I wanted to talk  about PSP. To raise awareness of what is. In reality, PSP is only part of my dad’s story.  He has PSP but he is not, PSP.  Like so many cruel progressive illnesses PSP may be pushing him, and my family to the limits – but we will not be broken.  

If you want to know more about PSP and need support, please contact PSPA.

Visit their website: https://pspassociation.org.uk/

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