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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 into the already full mix and it is difficult to know just what is due to real life and what is due to 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 more formal name to encompass the mental processes relating to accumulating, storing and retrieving information – more informally referred to as memory and thinking. As with everything to do with MS, no two people will have exactly the same cognition issues and some people with MS don’t ever notice any cognitive concerns. Sometimes cognition can be affected by an MS relapse and may only be a temporary symptom that resolves itself over time or may be a symptom that is experienced during times of tiredness or stress. If symptoms are persisting, interfering with day-to-day function or study/work, or getting worse, it is always a good idea to talk to the MS health care team and neurologist about how you are feeling. It is important that they know about the issues and assess what they can do to help. Sometimes a simple assessment in clinic can be a valuable tool to let the healthcare team know some basic information. If needed, a referral to a neuropsychologist can be organised for more extensive testing and the development of a plan of action to address specific issues with cognition, tailored to individual needs.
Cognition issues in people living with MS can present in different areas including social, emotional, executive function, memory, and attention. These are some of the ways you may notice that cognition is affected and some simple and practical ways to help.
Everyone forgets where they put their 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 important goes. Keep a folder for household bills and important documents 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. These simple tips can free up much time and energy that you use for things you enjoy.
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, not just in MS. 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, take a deep breath, 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 your partner can help you out. If you are making a speech or a work-related talk, try using cards and notes to jog your memory. Having a sense of humour also helps in these situations.
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, the carefully made plans 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 special journal or book with important tasks clearly outlined. Talk to friends and family about important decisions you need to make, sometimes this may involve choices about your MS treatment and wellbeing. Before any health-related appointments, write out a list of what is important to you and what you need to ask the doctor or other health care professional and take this list with you. Don’t be frightened to ask for help or to have something repeated, especially for important decisions or things you don’t quite understand. It is better to be up-front so that you get the most value out of every appointment.
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. Smart phones and tablets are commonly used as reminders by many people and can be an excellent way to keep on top of things.
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, such as early in the morning or after an afternoon rest 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. 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. Cognition issues can impact many other areas of your life, so it is so important to address issues early so that strategies can be put in place to help you live your best life. There are many websites and books which can help you with practical tips to manage cognition, some of the best are the Staying Smart brochures and website by the UK MS Trust and the Can Do MS resources.
Other resources from MS Australia can be found [here]. [Link to Cognition Symptoms Sheet]
Don’t forget that the state and territory based MS organisations provide care and support services to people living with MS:
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.
