Hi, the biggest issue I have with my MS is my memory/brain function. I’m a reasonably intelligent mid 40s bloke and I’ve worked in banking/finance for 25 years. I now seem to struggle to remember people’s names, forget things I need to do and permanently have a bad headache. I can’t stand noise now and I do not feel in control of myself. It’s started to affect my work as I’m not confident in my own ability at the moment and being the main bread winner it’s rather scary. Has anyone any thoughts as to how I can improve this? I play memory games and keep a notebook but I still seem to be worsening.
Hey Pops,
I would like advice on this too. My confidence has been knocked at work through poor memory and brain function…I was in a meeting the other week and I was asked a basic question…“what is the general consensus of the team?” I was sat there and I did not recognise the word ‘consensus’, yet it being a word I am very familiar with and fully understood the context it was in. I was embarrassed as I asked him to repeat himself and I still didn’t get it so I finally had to ask “What do you mean?”. Anyway, totally embarrassing. Sorry I can’t help, I think you are probably doing the right thing though with the games/notebook.
Nikki
Hi
I don’t work anymore so can’t help with your exact situation(s), but I can tell you what I do to help my memory problems. Sorry if I’m telling you what you already do.
I use a smart phone (iphone) and its various apps are a real boon to the challenged of memory:
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the calendar, it’s shared by my husband and me so appears on both our phones and iPad etc
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a diary app. I use this for health type stuff, but there’s no reason why you shouldn’t start using one for everyday use
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reminders, with dates and times so I don’t forget to do things
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a shopping app (shopshop) is great. You can use it for all kinds of things, not just a shopping list
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notes, to remind me of lists of things, phone numbers, usernames and hints to myself for passwords etc
I’m also waiting for an appointment with a neuro psychologist to see what can be done to help.
Recently I read about what can be called ‘inattentive deafness’. It’s when you are busy with one thing, your brain just can’t cope with a second thing, so you just don’t hear the start of whatever someone is saying. This might be what you’re finding in meetings, you’re writing a note or an action and someone says something else, you miss the beginning of their sentence so the rest doesn’t make any sense. In a way it’s suddenly being incapable of multi-tasking or at least, multiple thinking. For me it’s a minor inconvenience; if I was still working, I’d find the meetings I’d have to attend a total nightmare. I have no solution to this, but maybe becoming aware of a problem might make it easier to deal with?
Possibly all useless information, if so, apologies.
Sue
It was MS turning me stupid that did for me at work, so I feel your pain. I limped on for years, the last few part-time, and it would have been better for all concerned if they had shown me the door years before they did (I had a very long-suffering and tolerant employer) but that’s another story.
I am not going to suggest memory tricks. I am going to suggest that you sit down and think long, hard and coolly about long term financial support for your household (if you have not already done so) and plan accordingly. Are you in a job in which you will be provided for half-reasonably if your health breaks down to the extent that you can’t do it any more? If so, clasp that employer to your bosom with hoops of steel. If not, think about how you could manoeuvre yourself into that position while you are well enough to do so.
It is tough, this stuff, and not for cissies. But some brutally realistic planning ahead can really help. Regard it as a work problem - which is what it is, when you think about it. Just another boring-but-important long-term risk to plan for. ‘Plan for the worst and hope for the best’ is usually a good strategy.
Alison
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Pops,
Just a few notes to add to what has been said by Alison.
Although 20 years older than you, I did find my concentration waning when I was still working full time and I often had headaches. As you no doubt know, your employer has to make reasonable adjustments for you under employment legislation. Have you been referred to your OH department for an assessment to see what might be done to help you? If you are in an union make sure you get them on board for support and advice. Last year I reduced my hours to 20 spread over four mornings. This did help for a long time although I did take a financial hit, of course. That may not suit your circumstances as you say you are the main breadwinner. I finally took early medical retirement on 5 December.
I could have slogged on for a while, perhaps a year, but I was giving up my best time to work. I was a zombie in the afternoons and evenings on the days I did work. Are you working too many hours, plus travel, in a stressful environment? Could you work some days from home?
As I am sure you are aware, there are so many factors to consider and I cannot offer any other advice than to reiterate that you and your family must review your circumstances and see what can be done. My first port of call would be your union and then your OH department. They were both extremely supportive in my case, and you may be surprised at what they might offer you.
Best wishes
Alun
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Bloody hell, its scary.
I’m a project manager/zookeeper, I love my job but I am struggling so much with it, the physical side of the zookeeping and the mental side of the project work (though this does give me time to sit in the office).
I feel like I am losing my best time to work, so totally understand what you are saying Alun. Yet it is part of my identity too, I don’t want to lose that.
Financially I’m so stressed, I have a mortgage (until 2039!!!), I am scared as my ability to do do my job is getting harder and I’m not sure where I’m going to end up in the next year or two. My employer is local government and is very supportive, they reduced my hours without batting an eyelid following my diagnosis.
The only way round it that I can see is if I move into my lounge and rent out both my rooms and rely on disability benefits (of which I receive none at the moment). I have seen another thread on the forum about benefits.
Nikki
Would CBT help?
pollx
Bloody hell, its scary.
I’m a project manager/zookeeper, I love my job but I am struggling so much with it, the physical side of the zookeeping and the mental side of the project work (though this does give me time to sit in the office).
I feel like I am losing my best time to work, so totally understand what you are saying Alun. Yet it is part of my identity too, I don’t want to lose that.
Financially I’m so stressed, I have a mortgage (until 2039!!!), I am scared as my ability to do do my job is getting harder and I’m not sure where I’m going to end up in the next year or two. My employer is local government and is very supportive, they reduced my hours without batting an eyelid following my diagnosis.
The only way round it that I can see is if I move into my lounge and rent out both my rooms and rely on disability benefits (of which I receive none at the moment). I have seen another thread on the forum about benefits.
Nikki
Hello Pops,
If you’re under the care of a Neurologist or MS Nurse, it may be worth asking for a referral for an assessment with a Clinical Neuropsychologist. I did this myself several years ago when I noticed problems with processing numbers, but also memory problems. The outcome was that he took into account my family situation, also work situation and between us, developed coping strategies to deal with it all.
Fast forward to the current state of things - I asked my MS Nurse last Sept if I could have another referral because I’d noticed a decline, not so much in memory but the way I read or perceive things and often misinterpret what I read and what people say to me. I discounted CBT for my own reasons but that too might be an option for you.
Most important though is that you ask for help with this because there’s no shame in it.
Eiona
If I was in this position, I’d try Modafinil. The doctors will only prescribe it for excessive sleepiness but it does amazing things for ability to concentrate and memory.
Sounds like you could do with a high regular dose of B12 - and all the other B Vits. Just google B Vits and memory/brain function.Look up B12 deficiency MS as well lts best to take B12 Cobalamin - look for the 5,000mcg ones that dissolve under the tongue - sublingual. lt works for us with MS and also will help prevent Altziemers.
Some years ago, l was talking to a friend who is a nurse in a old folks home. She said they dose them all up with B12 to keep the brain active- and also Vitd3 to prevent broken bones.
Reading and word search games will also keep the brain active - but you will definitely need the B12 to help.
l take it with B complex - and a high dose Biotin and Thiamine [for energy.
‘‘Could it be B12’’ A epidemic of misdiagnosis - is a good read - look it up online.
B Vits are water-soluble - so you cannot overdose - as you just pee out any that is not utilised.
Best of luck Pops - l am sure you will be back to your old self soon.
LDN - also helps me with brain function.
Thanks everyone. Lots to think about and ponder. I’m just getting right p****d off with MS now!
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