Katie was diagnosed with MS in 2008. Here she tells us how Gilly Burdon, an MS specialist occupational therapist helped her.
Katie: I first met Gilly through work. I was working as a dietician and I was having a few problems so I contacted Del the MS nurse.
Gilly: Del referred Katie to me because she was struggling with high levels of fatigue. We did an initial assessment where I got lots of info about Katie’s MS. We made a list of what the issues were. Fatigue was one of them, but there were also work-related issues. We worked out that some of Katie’s main problems were due to cognitive changes.
Katie: I would talk to friends and they’d say, “Do you remember what we were talking about last night?” And I’d be like, “I know we were talking about something... But no I don’t.”
Gilly: I referred Katie to the neuropsyschological team, and they carried out an assessment.
Katie: It was nerve-wracking, to begin with. They test your memory and ask you lots of questions.
Gilly: It looks at all of your cognitive abilities, not just memory. The results showed that Katie’s cognitive problems were a result of her MS. Once that was established, we could look at strategies for managing these issues and it was clear that memory was the biggest issue for her.
Katie: Initially I struggled with going to bed. I’d lie down and think: have I locked the door, have I done this, have I done that, is everything ready for tomorrow? All night, back and forth. So Gilly helped me make a little checklist. If I got to the bottom I’d know everything’s done and I can go and count sheep.
Gilly: When I first met Katie she used to have so many lists: lists of lists of lists. It was all quite overwhelming. So we looked at trying to eliminate all the masses of paper and just use one strategy - which is now Katie’s diary.
Katie: I put in there what I’ve eaten, who I’ve seen, where I’ve been, my appointments and how they went
Gilly: We’ve also worked on making plans realistic and achievable. Instead of trying to do five things, Katie now focuses on doing one or two things really well.
Katie: I really wanted to get involved in the local carnival last summer. But instead of trying to enter all the baking and craft competions, I decided to just focus on the fancy dress competition. And I won first prize!
Gilly: With regard to the carnival, by scaling down her aspirations she won it, which was fantastic! Katie had a reassessment of her cognition about 18 months after the first assessment. That was really positive. It highlighted that Katie’s made some great improvements as a result of our work together.
The MS Trust publishes guides to managing many common MS symptoms, including fatigue.
To find out if an occupational therapist could help you, speak to your MS nurse or GP. You can visit our Map of MS services to find out what's available near you.
This story is part of the May 2016 issue of Open Door.