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Thanks for the memory: forgetting things and MS

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elephant looking forgetful

Memory is one of those things we all tend to take for granted until it’s not working as well as it was.

Problems remembering things are common in multiple sclerosis and can affect many aspects of everyday life.

This blog provides tips and tricks to get round them as well as suggesting ways that others can be supportive

We all forget things!

Has this been said to you? What was your reaction? Did it feel like they just didn’t understand?

It’s true that we all forget things sometimes but some people forget things more often than others. Difficulties with memory affect most people as they get older, also anyone who isn’t sleeping well and those on some medicines, for example. It also affects people with certain medical conditions including MS.

The science bit

Memories are grouped into three categories:

  • immediate memories such as sounds, which are only stored for a few seconds
  • short-term or recent memories such as telephone numbers, which stay in your memory for 15 to 20 seconds. The brain can store about seven chunks of short-term information at any time
  • long-term or remote memories which are more permanent memories that have been reinforced because you've repeatedly gone over them in your mind

You can watch this short video to get an excellent overview of how memory works in just 2mins 40secs.

MS and memory

Memory difficulties is one of a group of symptoms that affect thinking in some people with multiple sclerosis. They are known as cognitive symptoms. It’s estimated that about half of everyone with MS has some difficulties at some point with some aspect of thinking. For most people the symptoms are relatively mild and, like other symptoms, can fluctuate from day to day or from morning to evening.

At first, you may not realise that your memory is not as sharp as it used to be and wonder why others get irritated with you. On the other hand, you may know that you have some difficulty but don’t know of anything that can help.

Memory difficulties in MS are mostly about not recalling recent events or things you’ve been told or it could be forgetting to do something you’d planned to do. They usually affect getting everyday tasks done. Some people worry that they will have total memory loss but this is extremely unlikely because of MS. Memory difficulties either stay the same over several years or get worse only slowly. This gives you time to get good strategies in place to deal with the effects.

Causes of memory difficulties in MS

Committing something to memory is a complex process involving several regions of the brain. Recalling something from memory is equally complex. If MS lesions interrupt these pathways, memory will be impaired.

Sometimes what seems like forgetfulness is really because someone didn’t notice something in the first place due to poor concentration or lack of interest.

Some medicines can affect concentration and remembering things. You might like to check the leaflets for all your medicines and see if this is mentioned. If you are on a wide range of meds, small effects from several drugs can add up to a large effect. It can be worth asking your health professionals for a medicines review to see if the benefits of all your treatments still outweigh the side effects.

Sleeping problems and fatigue often make memory difficulties worse so anything you can do to help you sleep or to tackle fatigue will be helpful. Anxiety, depression or having a relapse can affect memory. So can heat or cold if they make your symptoms worse. Take steps to deal with these stressors so that your cognitive abilities improve as much as possible.

Examples of forgetting things

More often than not, it’s things that should be in your short term memory that don’t come back to mind, for example:

  • Where you put something like the car keys
  • What you went out for eg to buy a pint of milk
  • What you’ve done recently eg already bought a pint of milk this morning so you didn’t need to go out again
  • What someone told you recently eg it’s your turn to fetch the kids
  • To take medication
  • The way to somewhere, sometimes including the way home
  • The right word for an everyday object

Knock on effects

Having difficulties with memory can affect your confidence. You could be more reluctant to go out or to strike up a conversation. You may be embarrassed to discover that you’d already bought a pint of milk this morning and then went out to buy another, convinced that this still needed doing. You may laugh it off but be upset inside.

However, it can be good to alert others to these symptoms so that they understand that it is part of your MS. This way, they can support you in dealing with it. You might like to tell friends and family as well as work colleagues so that any forgetfulness is not mistaken for being inefficient or difficult.

Tips and tricks for you

We can all learn from how well-organised people do things. Often they don’t have naturally good memories, they just have systems in place to remind them what they need to do and to record what they’ve already done. Here are a few tips:

  • Keep everyday items, such as car keys, in the same place then you will always know where they are (and train your family or housemates to do the same if you share)
  • Write information down. Keep pen and paper near the phone and in your handbag or jacket
  • Use an alarm to remind you to do something, such as take something out of the oven or catch a bus
  • Repeat information back to someone to check it’s right and to help commit it to memory
  • Encourage others to email or text you so that you have instructions or directions written down
  • Follow a routine so you know what usually happens next
  • Write lists, use a diary, sticky notes or the memo function on your phone
  • Tick things off your list as soon as you’ve done them. This can give you a sense of achievement as well as making sure you don’t do something twice
  • Picture something, like the way to the cinema, rather than just the directions to get there. Sometimes using a more visual way of remembering makes all the difference
  • Prioritise tasks and only do one thing at a time
  • Remove distractions, like background noise or the TV, so you can concentrate better
  • Avoid doing physical and mental tasks at the same time, like walking and holding a conversation
  • Use word associations as an aide memoir but choose something that appeals to your mind so will hopefully stick. If the new nurse is called Victoria, think of a plum (Victoria plum tree) or Victoria bus station or Queen Victoria or your Auntie Vicki.

But don’t beat yourself up. No system is perfect and most of them rely on you remembering to do something, like check a list, which is a bit of a tall order if remembering is the problem you are trying to tackle in the first place!

Professional support

Although there is a lot you can do yourself, you may find it helpful to discuss your symptoms with your MS nurse or neurologist. They may refer you to a psychologist, speech and language therapist or occupational therapist for support with different aspects of memory.

How can others help?

If you are the friend, family or colleague of someone with MS, you could make a difference by:

  • Being supportive. It’s the MS causing the difficulty not the person. Memory issues can be annoying to people with MS not just you…..
  • Doing a note or sending a text or email, with directions or arrangements to meet up. That way the person with MS won’t have to remember it all.
  • Reading the tips and tricks section above. Be prepared for lists, lists and more lists in your life as well as alarms, sticky notes and being told to always put the car keys in the same place. This is a good thing……….

And remember!

Most of us will have these sorts of difficulties at some point in our lives so we should get prepared too!

Jane

MS Trust Information Team

MS is complex, life-long and unpredictable, without a known cause or cure. Our Information Team take away some of the uncertainty such a diagnosis can bring and help people living with MS to see a way forward.

They provide bespoke, practical, evidence-based information, receiving over 3,000 enquiries and sending out over 60,000 publications, researched and written by the team, every year.

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