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Cognitive problems

Hi all,

My husband has PPMS and in the last year his cognitive problems have worsened.

If I was to ask him what he had for dinner 2 minutes after eating it he would find it very hard without being prompted to recall.

A year ago for 15 minutes he didn’t recall who I was, it was the worse 15 minutes of my life. The MS consultant said if you imagine a piece of cheese with holes in it then that is my husbands brain. The holes being the lesions.

Has anyone else noticed how their memory is getting worse?

Caz

Yes Caz unfortunately. Sorry about the distress with your husband, he must be very frustrated as well. My memory problems have prompted me having OCD as well, because I can’t remember what I have done, I have to either redo or check if I have. I was having a horrible time with my meds, forgetting what I had taken, what they are etc & ended up in A&E after taking an accidental overdose, my family sort them now, upsetting really, but I can’t trust myself anymore, I even have to write down when & what painkillers I have taken otherwise I would take them too often. Have worried it might be more than MS, but I have passed that test. Wish I could give you some comfort, but it seems to be the nature of the beast Tracey x

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Hi Caz

It’s a particularly horrible part of MS. My cognitive problems drive me and OH crazy. I can’t remember what’s been said to me. I have to use his brain as a kind of ‘external hard drive’ because my memory is so faulty. I read a lot and can’t remember the plot of a book I read last week. I can’t watch a TV series because I can’t keep track of the plot, even complex films are a bit beyond me.

I saw a Neuro-psychologist last year. She did a load of testing, basically said I had a ‘typical MS brain’, being slow to process information. She didn’t think there was much wrong with my memory, but then she doesn’t have to live with it. (And I not only thought she was wrong at the time, it’s got much worse in the last year.)

I don’t remember what I’ve got to do without calendars, reminders and diary notes. I can’t remember what someone’s told me or what I’ve told them. I don’t remember what I’ve written on here, sometimes I come across a post and utterly forget that I’d written it. I don’t remember symptoms or when things have happened, unless I use a diary.

I went to an appointment with Wheelchair Services the other day. The therapist said something about a questionnaire I’d completed a couple of months earlier. I said, no I didn’t, maybe the physiotherapist completed it? She then said, but you’ve written about typing your answers because you can’t write. I then looked at it and had absolutely no memory of having written it. It was two pages long. It was clearly written by me. All the answers were as I’d write them today. But I didn’t and still don’t, remember writing it.

Perhaps your husband could be referred to a neuro-psychologist? There might be some things he can do to improve his Swiss cheese brain? My experience could have been improved upon, but it might help?

Sue

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Mine has got particularly worst since my last relapse, to the point where my kids and The Man have started affectionately calling me Dory! (from Finding Nemo!).

What has started happening a lot is I will literally stop dead in the middle of conversation because I completely forget what we’re talking about, or I will be stood at the fridge, door wide open with no clue as to why I’m there… and my particular favourite (clue: it isn’t!) is when I’m attempting to walk and my legs just stop and won’t move, as if they’ve forgotten what to do!

Its all very frustrating, not to mention annoying but we try to laugh it off mostly… seeing as it is showing no sign of changing I’m guessing its just another thing I’ll have to get used to!

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Er, I would ‘like’ this post, only I can’t… but I completely relate, and as I said to a family member on the phone, I can forget the beginning of a sentence by the time you’ve got to the end of it! Makes you feel like a complete plonker. I couldn’t be without my diary, to record stuff that I have to remember day to day - if I’ve taken the correct pills (Vit D being the main one), and where to do my injections, so I rotate the sites properly, and what I need for work tomorrow. And post-it notes all over the place at work to remind me of stuff that I started yesterday that needs to be finished…

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Yes it sounds like something a lot of people with MS are going through. Someone referred him to a dementia group last year for testing and his MS consultant went mad. He said it is NOT the same as dementia although symptoms are similar.

I have contacted his MS nurse to ask if there is anything that can be done.

He has already phoned me 3 times today to ask where I am and I have spoken to him each time to tell him at work and it is only 8:56am so I guess more calls of reassurance to come.

For me it is very worrying and really not so frustrating for him as he does not realise he is confused.

Thanks

Caz

Hubby’s MS has progressed a lot to the point he is almost bed bound.

We do go out and about but close to home and for me it is a must he gets into the community even if its with me to the shops.

We try playing pairs on his ipad to keep the brain active however he has tremors in both hands and this is not easy without my guidance.

~He has now been registered partially sighted on top of everything else and so reading books is a no no now but i get him talking books from the RNIB. He can still watch and listen to the TV and music.

This MS is a nasty disease for all involved.

Thanks for replying everyone.

Caz

I have similar problems, Tracey. I’m OK with Gilenya as it’s only one tablet once a day, but I need help with painkillers because I can’t always remember what I’ve taken or when I took it.

My memory has got really bad my dr sent me to a memory clinic even though i said its ms related i failed all the tests and in the end they did say it was due to the ms and would only get worse and just keep the brain working by doing puzzles…i used to forget if i had took my meds so would end up taking double my wife now takes control…i would put things on to cook and totally forget sbout it so now im not allowed to cook,which us a bummer seeing as i was a chef…i go up to bed and ask my wife what we had for tea as dnt remember having it.cnt drive anymore as my concentration is crap…oh the joys

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