Introducing Staying Smart

Ever forget where you've put your keys? Struggle to find the word that's on the tip of your tongue? Can't concentrate when there are lots of people talking around you? You're not alone. Thinking and memory problems affect more than half of all people with MS and can have a big impact on your day to day life. The MS Trust has launched a new web zone to provide everyday tips and tricks to help lift the 'cog fog'. Claire Winchester, Head of Information and Engagement at the MS Trust, tells us more.

We are excited to introduce to you a new zone on our website. Staying Smart is for people who want to learn more about how MS affects their thinking and memory, and take action to reduce the impact that cognition problems have on everyday life. The new web zone, which builds on the work done by Professor Dawn Langdon and her team at Royal Holloway University, combines research evidence, expert advice, and peer support. We've designed it to be easy for people to read and we've ensured that it is accessible on all devices.

Cognition is the general word that covers all aspects of thinking. It includes memory, concentration, and planning. Research suggests around half of all people with MS will have cognition problems at some time, although these may be more prevalent in black people with MS. Cognitive difficulties can impact on all kinds of activities. They can affect how you feel about your abilities to work, your relationships with others, and your hobbies and other interests. Having memory problems can make it harder to manage your MS, for instance, if you forget to take medication or get to appointments. If you have trouble concentrating, you might find making decisions about your health care harder. Route finding problems can affect road safety and lead to falls. Cognition problems in everyday life generally fall into one of six categories, so we've used these to help you navigate quickly to the right information. You can work out which type of thinking is tricky for you, and click on one of the everyday problems to take you directly to the expert advice, hints and tips you can use yourself.

The most important new feature of Staying Smart is you! The new web zone gives you the opportunity to learn from other people with MS facing similar issues. On each of the six key information pages, you'll find a pop-up box with a prompt for you to share a piece of advice that works for you. You can click the box closed if you don't wish to add anything, but if you have a genius tip that has made all the difference to you, share it here! It might be just the nudge that someone else needs to help them. The Information Team will check and moderate the tips and upload them to the site. There might be duplication, so we can't promise that every suggestion will be uploaded. But we are looking forward to reading every one, and learning from the real experts in MS, the people living with it every day!

• Be kind to yourself and look after your mental health. Anxiety and depression can make your thinking and memory seem worse by taking up 'head space' with worry or intrusive thoughts.
• Stop smoking. Research shows that heavy smokers tend to have worse problems with thinking and memory.
• Review your medications with your MS team. Some drugs can make cognition problems worse, and so you might want to discuss alternative options.
• Take a break. Fatigue can affect your concentration and thinking skills. Can you complete your tasks at a time when you have more energy?
• Train your brain. Learning a new skill can help keep your thinking limber. A cognitive psychologist can help identify mental exercises tailored for any particular problems you have, or you can investigate some of the brain-training apps and games out there for yourself.

When I was diagnosed with MS I didn't know much about cognitive problems. In fact, when I first read about them, I just ignored them. I didn't tell my neurologist about my symptoms. Forgetting words I blamed on fatigue and speaking two languages (I am from Sweden originally). The lack of concentration I tried not to think or talk about. Words and communication are my job, and reading is one of my favourite ways to relax. Somehow the idea of losing out on these things, that I always used to be so good at, scared me more than the idea of ending up in a wheelchair.

But it got to the point where I had to admit to myself that I did have a problem, and it wasn't going away. I was sitting smack bang in the middle of an open-plan office, just by the telephones that rang all day. It was all very busy around me. I started feeling like I needed blinkers, there was so much going on, I lost my train of thought constantly. But I didn't want to say anything as it wasn't anybody else's fault, it was me losing concentration, it was me who started to fidget or talk to anyone that would walk past. My work started to suffer, so I realised I just had to admit defeat and 'come out' about my cognitive struggles.

During a one-to-one with my manager I told her that I found it really hard to concentrate, everything was taking too long to complete, and that I felt really bad about it. I felt like a failure and I never wanted special treatment because of my MS, but my manager was very understanding. I am still in the same open-plan office, but now I sit on my own with a wall on one side that blocks out the sound a bit. I don't notice the phones ringing as much, or hear people talking or walking. There are still days when I struggle, so at these times I tend to go and sit alone in a meeting room, or ask if I could work from home, if I know I am going to need to concentrate.