CurePSP-Jodie Avis-Smith Story

Jodie’s Story.

When I was just 6 years old my Nan was diagnosed with PSP. None of my family had any idea what this was, if it would affect her and how. There was hardly any information on it anywhere including the internet and as a result we were struggling to cope with the lack of understanding what was happening. We ended up picking things up and understanding more as things happened and her condition got progressively worse. We didn’t know how she’d be the next time we saw her, if she’d be better or worse… My parents had tried to explain to me so many times what was happening and why my nan wasn’t like my friends grandparents- taking me out for the day or taking me on nice long holidays, and me being so young I just couldn’t understand…

I think it all started when we all went to Ireland for a family holiday… we went to the beach for the day and me being so young i was in the sea all day so my mum, Nan and step grandad were standing together in the shore of the sea keeping an eye on me. My Nan was standing next to my mum and then she lost her balance slightly and kept going in circles around my mum and step granddad, then eventually she just lost her balance completely and fell over. Throughout the rest of this holiday my Nan’s balance was all over the place, she was falling over at least 3 or 4 times a day and I remember my mum saying to my step granddad that it wasn’t normal. I don’t really remember what happened with my Nan after this holiday I just remember being told she had PSP. I had no idea what it was so I was constantly asking my mum questions, despite having it all explained properly to me before.

I remember asking my mum why my Nan wasn’t like all my other friends grandparents and why she wasn’t ‘normal’.. There was nothing that I could do about it so I just started to accept it and stop asking questions. As I was getting older I was starting to understand it a bit more and be more accepting to the fact that she wasn’t getting better, she was getting progressively worse. I remember so clearly the day she said to me ‘Jodie, I can’t take you anywhere by car anymore.. We’ll have to get the bus.. I’m sorry I’m too ill.’ I remember thinking ‘why? What’s wrong with you?’ but I never said anything in-case I upset her. Over the years she was getting worse and worse and eventually she couldn’t walk un-aided until needed to be with someone all day, every day. It was so horrible to see her going in and out of hospital, having all these tests when there was nothing any of us could do for her. Eventually her sight was lost and she was unable see. Along with this she lost the ability to speak and write which made communicating difficult.

One evening after school when I was 12, my mum had a phone call from my step granddad saying he was struggling to lift my Nan into bed.. That she was all floppy and wasn’t responding all the time. So we went up there and helped my Nan into bed, had dinner and said goodbye. Little did we know that was the last goodbye we gave her… 4 o’clock the next morning there was another phone call from my granddad.. My Nan had passed away in her sleep…

3, almost 4 years on we all miss her like mad and wish she was still with us now. If there was more awareness of PSP then maybe there could have been something that could have been done to keep her here longer. Awareness needs to be spread about PSP! Yes it’s rare, but even still that shouldn’t stop people raising awareness! If anyone took the time to read this to the end, thank you so much 🙂 and please try and spread as much awareness as you possibly can! I loved my Nan so much and only had a limited amount of time with her and I don’t want this to happen to anyone else because I know exactly how it feels..

 I loved my Nan once, still love her now, and always will ♥

Battle of the Lashes asks you to join us in raising awareness of PSP. Help us reach 2000 New Followers on Twitter and Facebook to show your support as well as commemorate the life of Jodie’s Nan.

For more information on PSP, click here