Caroline Hughes

That changed when she came to Rocky Bay, a change she says feels like “night and day”.

What stands out most to her is the coordinated, team-based approach. Rocky Bay’s ‘Team Caroline’ is made up of speech therapists, physiotherapists, occupational therapists, allied health assistants and support workers, all working towards the same goals and sharing an understanding of what really matters to her.

That includes being able to safely get herself up off the floor if she falls. Working with her physiotherapist and occupational therapist, she has built strength in her arms and legs, learned safer recovery strategies and, perhaps most importantly, reduced some of her fear of falling. She can now recover from a fall in around a minute. The work has also had the added benefit of helping her walk further, something that had previously become difficult.

But the most meaningful impact her team has had on Caroline is their approach to helping her future-proof for a time when she is no longer able to do the things she currently can.

“For my disease, it’s really important that they future proof me so that I’ve got the best life I can have now, but I’m also prepared for the life I’ll have when I’m unable to do a lot of the things I can do now. They’ve been so good at working out plans and different ways around fixing things for me for the future.”

One of those initiatives has been working with a speech therapist to record Caroline’s voice while she is still able to, because of the progressive effect PSP has on her ability to speak. This means that when she eventually needs an AAC (Augmentative and Alternative Communication) device, she will still be able to communicate using her own voice, just in a different way. Caroline is also recording stories for her grandchildren, so that even if she loses her natural speech, they will still be able to hear her voice.

Importantly for Caroline, the support she has received from the team around her has helped to ease some of the mental load of living with a progressive disease, and she appreciates that they not only understand her physical disability but also the impact her PTSD has on her and how both conditions can affect her mental health. Sometimes that means recognising when her energy is low, checking in gently, or supporting her without judgement. To Caroline, that understanding matters as much as any therapy.

“What I will say about the Rocky Bay people is that they understand that I also have a mental disability as well,” she explains. “They are very understanding of the fact that sometimes my mood is not good because of that as well. Sometimes I might not have eaten because I don’t want to, and they’re very good at checking up on me and making sure I do eat. It just helps me to have someone asking about me.”

That support has also helped her with her independence at home. Recently, with the assistance of her support worker Emily, Caroline was able to invite friends over for a meal, which she says is a big step. A passionate chef before her diagnosis, cooking was something she had not done in more than three years. On the menu: chicken stuffed with cream cheese and cranberries, wrapped in prosciutto, with paprika-spiced smashed new potatoes and broccoli.