Why does it happen?
Memory Loss and Multiple Sclerosis
By Lori Kostich M.S. CCC-SLP
Mandell Center for Multiple Sclerosis
Have you been thinking these things to yourself lately?
"What happened to my memory!?"
“My family said they told me that already- 3 times”
“My friend said I asked that question already”
“I know I heard him say something- but I only
remember part of it”
Then keep reading! There are changes happening in your brain. That’s what MS does, it changes your brain.
By Lori Kostich M.S. CCC-SLP
Mandell Center for Multiple Sclerosis
Have you been thinking these things to yourself lately?
"What happened to my memory!?"
“My family said they told me that already- 3 times”
“My friend said I asked that question already”
“I know I heard him say something- but I only
remember part of it”
Then keep reading! There are changes happening in your brain. That’s what MS does, it changes your brain.
How can I manage it?
A frequent complaint is “my short term memory is horrible” followed by “Is there anything you can do about that?” YES THERE IS!
The first thing I talk about with my patient’s is the concept that memory is not a thing, it is a process. The “act of remembering” is how I often phrase it. And, this “remembering” has the following steps:
1. Paying Attention- To remember something, you have to be looking at it, listening to it, or holding it.
2. You then need to Make A Decision- are you or aren’t you going to try to remember this for later?
3. After you’ve paid attention and made the decision to remember it you need to DO SOMETHING with the information so you will remember it later:
Memory Has Three Parts – Encoding, Storage and Retrieval
1. Encoding- This is the first part of “remembering”. This is where you’ve decided what you are going to remember, you are paying attention to it, and you are working to remember the information. It is also called “New Learning” (think about it for a second, this makes sense- when you have to remember something new you are “learning” new information). This is where you need to stop and think. Should this be written down? Should you tell someone else to help you remember? Can you use a memory strategy – like visualization – to hang on to that information long term?
I’m sure some of you are thinking “That’s a lot of work! Why do I have to do all of that?” Well, there is a growing body of research that says that this is the part of memory where there is the biggest potential for breakdown. Meaning, that there are researchers (and I agree with them) who say that memory issues in pwMS are due to difficulty at this point- difficulty “Encoding”. Difficulty getting the information put away in the first place.
For example-
You and a friend are talking about what to do this weekend, and your friend says “Let’s go to the lake, at 7 o’clock on Saturday. You bring some sandwiches and drinks. I’ll bring chairs and desert”. An hour later you realize that you remember you are going to the lake on Saturday and you are bringing sandwiches. And you know there was more- but you are not quite sure what it was. This is most likely due to a deficit in encoding. Your brain couldn’t manage the information quick enough to “remember” it. So your brain could handle part of the message, but not the whole thing- you didn’t forget what your friend said- your brain never encoded it the first time. You didn’t forget the information; your brain never learned it.
This is through no intent of yours. You are not doing this on purpose. This is one of the (many) rotten things about MS, the speed at which your brain is working may be slowing down. MS is not like a stroke, where a part of the brain is suddenly not available for use. In MS, the signals in your brain are basically going the correct direction, but because of the demyelinating process, some of the signal escapes. So to get the thought to the correct place, it takes more signal- and more time. Also, when the scars form, this signals in your brain may not be able to get through those places efficiently. It’s sort of like squishing from a 3 lane highway down to 1 lane- the signal goes through, but it takes more time. So to ENCODE new information, it takes more time.
Again- you are not doing this on purpose. But, the home you live in, the job you have and the rate of speech of your loved ones are still going at the same pace.
2. Storage – the current thinking (and I agree with this also) is that storage in people with MS is basically intact. Again, this is not like a stroke where suddenly part of your brain is unavailable for use. I can argue effectively that everything you know- you still know. It just may take a little longer to get the information out.
3. Retrieval – This is the part of “remembering” where you actually go and access the information that was “encoded”. And it is frustrating when you can’t get it out “when you want it out”. There are strategies that you can use to find that word or the memory, such as describing what you are trying to recall (to yourself or someone you are talking to) or just waiting it out until the word comes out.
You can also let people help you with the retrieval part of memory, but everyone has different preferences on this. Some people don’t want help at all, they want to remember on their own. Others are willing to accept help with “retrieval” from strangers but not from family. For some it is the other way around. Think about it a little- what’s your preference?
So memory is not a “thing”, it is a “process”. It takes time to happen. And it has parts (encoding, storage and recall). Will you remember that?
(If not that’s OK- it will still be written here tomorrow)
So What Can You Do To Improve Your Memory?
Here are some ideas:
- Stop. Think. Let the information sink in. You are still capable of remembering new information, but because of the changes in how fast your brain is managing information, it is going to take a little bit longer. Give yourself that time.
- Stop. Listen. Are there distractions around you that might make it difficult to “encode” what you need to (T.V., radio, background noise)? Can you get rid of those distractions? If you can hear it your brain is working on processing that noise- and not on remembering what you need to remember.
- Stop. Decide. What do I need to remember? This is a conscious decision, don’t expect any information to just “sink in”.
- Choose a strategy that works for you in that moment. Do you need to write in down? Then find a piece of paper and write it down. Do you need an appointment card? Should tell someone to help you remember (the two heads are better than one strategy)? Do you need to repeat the information so you can remember it long enough to write it down? Can you generate a crazy image in your head to help you remember? Can you associate the new information to something you already know? Can you group things you need to remember so you can remember more?
- Technology. Many smart phones have voice recording. Figure that out. Go ahead and do it now. When you have a thought and you don’t want to lose it, speak it into your phone. Send yourself a text. Take a picture of what you need to remember (like the number you parked next to in that huge lot). Leave yourself a message on voice mail. Set the alarms and timers to send you reminders to start (and complete) tasks.
Lori Kostich M.S. CCC-SLP, MSCS
Mandell Center for Multiple Sclerosis
#multiplesclerosis #memory #cognition #MS
