Dr Therese Burke has been working as a Clinical Nurse Consultant in MS for over 15 years and as a researcher in the MS field for over 20 years, setting up and managing the clinical and research MS unit at Westmead Hospital/The University of Sydney until 2017. Therese was awarded a PhD for her study on the lived experience of Relapsing Remitting MS by the University of Notre Dame Australia (UNDA) in 2019, followed by post-doctoral research into the role of the MS Nurse in Australasia 2020-2021. Therese currently continues her own research as a Senior Research Fellow in the School of Nursing at UNDA, as well as managing the clinical trials platform at MS Research Australia. Therese has a passion for educating people and families living with MS, particularly at the start of the journey and has co-authored an international paper on the evolving role of the MS Nurse. Therese has been a Board member of the International Organisation of MS Nurses for many years, a Board member and President of the credentialling body for MS Nurses and a past President of MS Nurses Australasia. More recently, Therese was awarded an international “ Nightingale award” in the International Year of the Nurse and Midwife (2020) to continue research into improving the lives of people living with MS.
What was I doing? Oh … that’s right … I remember now … sort of
By Therese Burke
How many times have you heard yourself mutter those words? Our lives are so busy now, and with kids, work, study, family, caring for parents and grandparents, seeing friends and other responsibilities stretching us more than ever, add MS in to the already full mix and it is difficult to know what is just real life and what is due to the MS. The thing is…MS can play havoc with your memory, concentration, decision-making and the way you process information, but the good news is that there are strategies you can use to lessen the impact and improve your day-to-day function.
Cognition is the medical name, which refers to memory and thinking. As with everything to do with MS, no two people will have exactly the same memory or cognition issues and some people with MS don’t have any issues in this area whatsoever. Sometimes cognition can be affected by a relapse and may only be a temporary symptom that resolves itself over time, or only a symptom that you have when you are particularly tired or stressed. If you find that your symptoms are persisting, interfering with your day to day function or study/work, or getting worse, it is always a good idea to talk to your MS Nurse and Neurologist about how you are feeling. It is important that they know what is going on and check what they can do to help. A neuropsychologist is an important resource to perform assessments on cognition and detail strategies to assist, and is a valuable member of the MS health care team.
Cognition issues in people living with MS can present in a variety of ways and these are just some of them:
Everyone forgets where they put the keys sometimes, however if this is something that happens commonly for you, try having a special place for important things such as keys, wallet, handbags and always put your items there, or have a big basket near the front door where everything goes. Keep a folder for household bills so that everything is together and goes in to be paid and out to another folder later for safekeeping. You can also keep a list on the fridge of where everything is kept. The trick here is to always adhere to your plan and to check things at night before bed to make sure you have put things in their set place, ready to find the next day.
You know that feeling …when it is just on the tip of your tongue but you can’t quite get it out! This issue also happens to everybody at different times. The important thing is not to beat yourself up about it too much- people around you may not even notice that you are having trouble and stress can make it even harder to find the right word, so relax and try using another word for what you mean to say. If remembering names is tricky for you, try practicing the names of people you will meet before events or get your partner to help you out. If you are making a speech or a work related talk, try using cards and notes to jog your memory.
Planning and organising
Sometimes these areas can be a challenge, and like the other cognition issues, can happen suddenly or for short periods of time, or you may notice more long lasting symptoms. When you are particularly busy or stressed, these things can often fall apart. It is important to plan as much as possible in advance, write yourself notes or post-its, ensure you are not rushed and leave more time to get places or deal with changes in your daily schedule. If learning new tasks at work or school, allow yourself plenty of time and takes notes as you go to refer back to. Keep a journal or book with important tasks clearly outlined. Talk to friends and family about important decisions you need to make, sometimes this may involves choices about your MS treatment and well-being. Don’t be frightened to ask for help or to have something repeated, especially for important decisions.
Our memory is important for us to communicate, and difficulties in this area can be especially frustrating. Tips include using pictures in your mind to help remember things, such as people and events (visualisation and imagery) and using prompts such as diaries and planners to jot down things you need to remember for later. List important events, appointments, birthdays and other reminders in your diary and review the diary daily so that you keep up to date. These days smart phones and tablets are very common and can be an excellent way to keep on top of things and set reminders.
Concentrating can be a major hurdle for people living with MS and can vary from day to day, depending on other factors in your life. Planning important discussions and meetings at a time when you are not so tired can be a big help, as well as enlisting your family and friends to help with scheduling and respecting rest periods if you are particularly fatigued. In conversations, try to stay on track by repeating or summarising what has been said to stay focused and interested in your conversations. Minimising distractions at work and ensuring a quieter workplace if possible may also be helpful.
Your local MS Nurse and Neurologist can also be a valuable source for referrals to neuropsychologists if needed for further assessment and to outline strategies to help you stay at your best. And finally, don’t hesitate to ask for help. There are many websites and books which can help you with practical tips to manage cognition, and one of the best is the Staying Smart brochures and website by the UK MS Trust at https://www.mstrust.org.uk/news/views-and-comments/staying-smart-research-ms-and-memory
Other resources from MS Australia can be found here https://www.msaustralia.org.au/publications/changes-memory-and-thinking