Please help anybody who suffers memory problems. I am beginning to forget even the everyday things like taking my pills. I have just started setting alarms and writing lists. This is causing me great anxiety as used to have a good memory. The neurologist is changing me from gabapentin to epilim not sure if it’s the change in meds or ms or a bit of both.
Cognitive problems, especially including forgetfulness are very common for MSers. I use the following tools:
- A calendar, this is held online, on my iPad, iphone and also on my husbands phone etc.
- A diary, this is an online app, again accessed by iphone and iPad. I use it to keep records of health issues, it’s helpful as I can put tabs on different types of health issue (eg relapses, bowels, bladder etc) so I can check progress of things. I’ve been keeping it for about 4 years now, not daily but fairly frequent. Originally this was a written diary but my writing’s pretty iffy now.
- A notes app, I write down what I need to ask eg the GP or neuro. I also have a list of usernames and some password hints (just things like the number of letters and numbers required).
- A shopping list app, so as I think of something I need it goes on the list.
- I read on a kindle, so I have loads of wish lists of books I want to read. I also use a website called price drop tracker, this not only tells me when books go down in price, it also has a list of authors who’s books I’ve read and liked. Without it, I’d never remember their names.
I don’t really use my phone as a phone, apart from the odd text. It’s much more about organising my life and helping my memory.
I’m being referred to a psychologist to assess my cognitive problems. I particularly started getting worried because I was forgetting the plot of books I’d read only recently. I have always read a huge amount and to find that I’d read numbers one and two of a series (& liked them) earlier this year, only to realise I’d completely forgotten them, so much that I’ve re-read books that I only read in March this year.
It’s odd, until I started writing this post, I hadn’t realised quite how reliant I have become on my technological memory aids. I think I forget!!!
I don’t forget to take pills because if I do, I suffer the consequences. When I was taking Tecfidera, my husband reminded me midway through each meal to take one. Without his reminder, I’d often forget.
that is great advice I will use some of those and I am sure they will definitely help. As for forgetting plots in books, that happens to me too and recently most worryingly forgetting what is happening in television programmes that may only be an hour long. My poor long suffering husband has to explain the stories to me! But I have always been a bit like that and used to think it’s because I am blonde! I have written up a list of my daily chores and would forget them if I didn’t check them off daily. I am on tecfidera too do you think it is anything to do with that drug?
I’d forgotten about the TV. I’m finding it almost impossible to follow a series. It’s OK if I save up about 3 episodes to watch at once, but one hour per week is just impossible. My lovely husband has to explain the plot to me too.
I don’t think my cognitive problems are related to Tecfidera, I’ve had varying degrees of these problems for several years and was only on Tec for about 8 months. It’s not improved in the month since I stopped either.
I remember (hah it can be done!) when I started to take Avonex way back about 13/14 years ago, it gave me terrible cognitive problems. I couldn’t remember anything. On one occasion I was staring at the controls on my cooker trying to figure out which little diagram was for the grill and which the oven. I also spent one whole day writing a training course, that when I read it back the next day was total nonsense. Eventually, when I explained what was happening, my neurologist at the time (lovely Dr Giovannoni) explained that occasionally a beta interferon can exacerbate existing symptoms. At the time I had no idea I even had any cognitive problems. I was horrified, the trouble I now have has insidiously snuck up on me gradually over years.
My memory and cognitive problems now are nowhere near as bad as that. I really hope they don’t ever get to be that bad full time. But at least it gave me an insight into what can happen.
At least I still get some of the answers right on University Challenge. (Only some of the history/literature ones, my poor brain shuts up shop on the maths and science!)
Hi Emma, I recently came off of Gabapentin and went on to pregabalin. My memory has worsened since my MS took hold but really declined when I came off gabapentin. I have gone back to gabapentin and have seen a slight improvement. May not be the answer for you but worth checking with ur Neuro or GP.
Hi Emma, like Ssssue my mobile phone has become invaluable as a reminder gadget in my pocket, i have twice forgotten where i’ve parked my car and had to call the Police to help me find it i currently use a Windows smart phone which has a brilliant personal assistant thingy called Cortana (much like the i-phones Siri) but i can set reminders which will use my phones GPS system, for instance - pick up milk - bread etc when i pass a supermarket, and the phones GPS will alert me when i’m close to a supermarket and flash the reminder up on the screen, and when i park my car i use the map app to drop a pin of that location and if i forget where i’ve parked i just use the mapping app to guide me to where it is (i must look really silly in my wheelchair with a sat nav lol)
Totally relating to this! I used to have a pretty good memory, but these days… not so much. I keep a small diary in my bag (A6 size) and all my drugs, injection sites etc are written down in it, and passwords for websites which I visit regularly - not in plain text, I should emphasise, but hints (that only I understand) plus numbers. And Post-It notes everywhere…
It does have advantages the loosing T.V plots. I can do a re run of my favorite shows now, and have forgotten the plots so its like watching them all over again lol.
Although with me, mine is not just MS, I was diagnosed with Transient Epileptic Amnesia, and this takes some of my auto biography, and silly things.
So i never know when MS starts and the TEA finishes lol.
MERRY XMAS. xx
Morning Emma-Lisa, try not to stress, as the more you do the worse the memory thing gets.
Its a vicious cycle.
I find mine is so much worse when i am stressed, hot or anxious.
Cognitivie issues in MS is normal sadly, although to be fair a lot of people without MS have the same issues.
I have even now got saved documents on my laptop with dates and venues as the saved name, so when i turn my computer on, I can see all my meetings etc lol. I also set the calander within outlook, which pops up alarm when i have to go somewhere.
I have a system with my tablets, as I was forgetting to take them or forgot i took them.
Take a deep breath hun. Try not to get stressed over it. The way i helped mine was silly really i started to play games on facebook, like farming and stuff, and had to do things or all my crops would die etc, and after a year it really worked lol…my memory sharpened up. I still have issues but thats a whole new thing.
Remember anxiety and stress makes it worse. Work with your memory restraints and it will come out right in the end. My daughter is 42 and doesnt have MS, and she has the worse memory ever lol… big hugs. xxx
MERRY XMAS. XX
Thank you all so much for your words it is so useful to have your input on this and it certainly gives me some ideas for coping strategies and where to move forward from here. I wish you all a very merry Xmas and happy new year I hope 2016 is a suitably good one!
I don’t think forgetting pills is so weird or concerning. Ironically, the more I’ve got used to them, the more easily I forget.
When it was all new and unusual, I never forgot. But now it’s become a habit to chuck a couple down my throat a few times a day, I’m more inclined to forget, because I don’t consciously think about it anymore.
It’s not unusual that the first hint I get I may have missed some is that symptoms seem unusually bad, and I fear I’m starting a relapse. Then I discover the missed pills somewhere - all set out, ready to take, but something has distracted me at the crucial moment, and I never completed the operation.
I’ve never actually thought of this as a “symptom”. It’s just that pill-taking has become so routine to me, it doesn’t stand out in my mind whether I’ve done it or not.
Generally, I’ve started OK, and even made a coffee to wash the pills down, but a phone call or knock at the door, or even just the ping of the email, and I might finish the cup without taking them.
An hour or two later, and: “Woe is me, I don’t feel well! Something’s wrong!”
I had to buy a pill box from the chemist and make up pills at the weekend as this is the only way I can be sure I’ve takin them at the moment. Hoping things calm down over the school holidays, although got a neuro appointment on 31st so that’s at the back of my mind…