MS is not only a physically disabling disease it also affects cognition. However, there is something you can do about it, which is why you need to use it or lose it.
Some years ago when she was on a course about brain function/deficits, my neuro physio was shown examples of MRI activity of people doing active language work - i.e. not practising a language they knew but engaged in new learning. She said it was astonishing - so many areas of the brain lit up. She was told that the only other activity producing this degree of effect was playing a musical instrument. In lockdown, I was recommended DUOLINGO. It's a free on-line language learning platform and offers around 20 languages, all the usual ones and some lesser known ones. It's very user-friendly, quite gimmicky but fun. You sign up to whatever time you want to give - I just commit to ten minutes a day, doing more when I feel like it. I've been going for 15 months.
There is good evidence from the general population that learning a new second or third language as an adult increases your cognitive reserve and delays the onset of dementia. I have little doubt the reason for this is that learning new things stimulates programmes for the brain to produce new synapses and connections which are neuroprotective. This will almost certainly apply to MS. So yes, learning a new language is a form of cognitive exercise.
I have just been made redundant and my immediate feeling was relief, I have been trying to keep up, and stay on top of things like the old me could, I was only diagnosed two years ago, but it seems MS has been around for me for at least 8years with many brain and spinal lesions. I am now in the situation of thinking what do I apply for? NHS jobs at my pay grade, or do I take a step down to lesser role that I might manage better, but will keep me active and ‘using it’…. I am fortunate to have protected my income with insurance prior to diagnosis, but I am 34 and not ready to ‘retire’ …. I think the cognitive element is really not addressed or spoke about enough. Thank you for your blog
I was in very similar boat when my consultancy work dwindled during Covid. Thank goodness for Critical Illness Insurance!
But its not just about money - my work informs my volunteering, gets me out of bed in the morning, gives me more to talk about etc
Check out my comment about Access to Work.
Bizarre as it may sound to somebody who is not on benefits (I am assuming) you CAN get help & support from the Disability Employment Adviser in your local job centre. They have just launched a scheme whereby we can give advise to disabled people even if they are not on Universal Credit. This is new so many people will have not heard of it but it sounds to me what you need to point you in the right direction of what is available in your area.
Thank you so much Prof G, you really have answered my concerns in this newsletter, cognition is my biggest MS problem. I can’t explain how much I appreciate your explanations, thank you, you’re a really a light in the darkness explaining all this mysterious stuff that’s happening to us. I would love to assess and track my cognition on the PASAT test and would initiate whatever rehab is recommended. On the outside I appear really well physically but I’ve lost a lot of my social stamina and work confidence since having MS because of the dementia symptoms. In fact I haven’t returned to work for various motherhood reasons but cognitive function is one of them. Conversations, retrieval of words, short term memory, multi tasking, reading, have all improved massively since my first relapses in 2014/15 but the residual ongoing deficit is still a serious knock to the confidence, and I experience a lot of my fatigue from having to really focus on those cognitive processes when I’m around others - it’s exhausting. It’s invisible to others and as non-medical people it’s really hard to define and explain and understand the discreet cognitive processes which we struggle with so oftentimes it’s much easier to not explain to others at all! In terms of self management, I think it would help me to have a specific medical name for some of these cognitive deficits, to build my own cognitive profile, so I can actually interrogate the internet and help myself to find the things I can work on to improve - otherwise it feels like a needle in a haystack. Incidentally my sister who has MS finds it cognitively too hard to process these newsletters 😭
When I started complaining of cognitive issues I had the PASAT test done and it was decided I had no issues. However, this was not suprising given my background
1) Cambridge maths graduate
2) I had been volunteering as maths support at my local primary school for several years.
As a result the speed with which I could add any 2 numbers was virtually instantaneous.
Having to add to the previous number was something I had to concentrate on, but was significantly easier than the vast majority of the population would find. It did not really count as multi tasking to me and unfortunately the results masked an ongoing issue.
All cognitive tests need to baseline against a persons background and ability or appropriate peer group, not just the general population.
I've had a similar experience. A lot of these cognitive tests seem to use addition and subtraction as their mental stress activity, so those of us who do lots of math regularly aren't very challenged, which can mask limitation in other areas. My understanding is the best use of these tests for measuring modest cognitive changes is to track your own performance over time, ideally started well before you have any decline. Unfortunately, the tests aren't easily available or regularly given, so usually we get tested the first time when we present to a neurologist with concerns, and never or infrequently after that. And then there's no relevant baseline or tracking.
Important topic as research shows MS often leads to people giving up work earlier than necessary. MS Society did comprehensive report on how MS thus creates poverty and Prof Gs work on "social capital" shows the effect of the resulting isolation. But that does NOT have to be the case. If you do want to work then there are solutions.
I have just been trained by DWP as a Disability Employment Adviser and I learnt about services such as Access to Work which can help PWMS. They can provide support - such as a support worker to help you with things you find difficult, equipment etc ...
Anyone with MS can apply regardless of your employment status (eg self employed or employed), regardless of your income, savings etc.
When I was self employed (pre covid) I claimed for several years and it enabled me me to keep working. I think it is one of the "best kept secrets".
Lots of us have been recruited & trained recently and are wanting to help ... so do check out Access to Work if your MS means you are having trouble keeping your job or finding work.
Thank you for this. I will def check it out. It gives me some hope!
Thank goodness for insurance is right, it certainly will keep the wolves from the door and it provides great peace of mind, but it is well below my earning capacity, I am highly skilled and experienced in my field and whilst I do know in my heart of hearts that I am slower and more forgetful and I do have to work twice as hard just to do what I used to do with ease… I also know I love the structure, the routine the excitement of getting stuck in to work, and the sense of efficacy it gives me, so I do not think I will give up just yet, but I will have to diversify or reduce hours or something 🙈🙈
Caregiver here. This possibly explains the troubling behaviors I see. Now I am informed and can encourage her neuro to test for this. >>> Prof G, you are covering all the right topics in these newsletters. I know it takes effort and precious time. 1000 thanks! You are essentially extending your care to 1000s more patients, empowering us, and enabling us to share vital info with our neuros and have further discussions.
Clearly, one of the mental tasks I do is check and read the posts and articles by Dr. G., Mouse Doctor and all the others. Sometimes they are long and drawn out, but if the topic interests me, I stay with it to see what there is. I'll look up many of the references too. I post a reply here and there, but they need to reviewed first. I do quite a bit that involves mental skills, from discussions with friends to researching antiques online and later selling them. Back 25 years ago, it did become evident that I had lost some of the ability to think and respond quickly (on my feet), with humor and insight, and to tie things together to make a point, when I was teaching PSY 101 in college. Now I see my cousin's (who also has MS) daughter, going down a similar career path and I spent much of the week thinking about how I would cleverly generate interest in Psychology, teaching my first day. Oh, the good old days!
Memory was a bit lacking and I had problems overseeing busy traffic situations so there was something there. These actually improved a lot. I did learned to play bridge online to improve my memory 2 years ago. Really love the game and got really good at it. Only positive thing that came from my DX is this new hobby. So far I have non active PPMS with 3 lesions in the spinalcord. I can not walk more than 300meters and everyday is filled with cramps. I guess I do need to be a bit more thankful for my working brain so far. Next appointment with my neurologist I will ask about BVL and SCVL and SELS and everything I learned here :) Might even ask if I can do a SDMT again, which I did 1.5 years ago see how they compare.
I've noticed cognitive decline over the years, but I'm finding it extremely challenging to sort out if it is MS, age, stress or something else. I talk to my neurologists about foggy headedness, memory challenges, and decision-making challenges ("analysis paralysis"), but even they aren't sure if it's MS or stress/anxiety. I've been considering trying anxiety meds so I can either confirm or rule that out as a cause. I've been wishing for a better way to sort out the sources of cognitive issues, so I'll check out these tests.
In the meantime, I play a lot of complex board games (now virtually) and have been watching Netflix shows in Spanish with English subtitles to try to use my brain in different ways.
I play poker to keep my mind sharp and build up cognitive reserve to help defend against this. Also reading. While there have been no clinical trials yet I remain firmly convinced that playing poker helps as it forces you to do quick mental math in your head and think through on multiple strategic levels simultaneously. Highly recommend as a fun way to protect your brain!
Neurologists need to do their part on this. I am a member of several large support groups for caregivers of people with MS - as my spouse has advanced MS that’s both very physical, and cognitive - and no one who comes to our group as a new member knows that MS can cause cognitive deficits approximating dementia in up to 40% of patients. Doctors don’t want to have this conversation with young patients.
I have had MS for over 40 years and have significant cognitive deterioration and found your latest news letter very interesting. What is the relationship between medication for treating symptoms, e.g. Baclofen and loss of cognition especially short term memory loss?
Yes, baclofen and other sedating symptomatic treatments make cognitive problems worse. This is why when pwMS stop oral baclofen and other antispasticity agents when they have a baclofen pump put in their heads clear.
Please note that intrathecal (into the CSF space around the spinal cord) baclofen via a baclofen pump only targets the spinal cord and does not affect the brain.
I have a job that's similar to software development, and it's very based in puzzle solving, so I've never understood the advice that I should do puzzles in my free time so I will be able to keep doing my job. Do you think it's job dependent i.e most people don't have puzzle solving jobs, or have they pinpointed something in particular about sudoku, etc that makes the difference?
I am 18 years in but unfortunately started to have these issues 4-5 years after diagnosis. I wish there were more we could do and better ways to document and treat this clinically. I am glad the newly diagnosed have so many options now. They will struggle with fewer of these things due to better treatment options. 🙂
I have just done a google search and there are some online offerings, but I am not sure if they have been validated or not. We have developed an online cognitive test that we are validating. I will let you know about it in the future.
Some years ago when she was on a course about brain function/deficits, my neuro physio was shown examples of MRI activity of people doing active language work - i.e. not practising a language they knew but engaged in new learning. She said it was astonishing - so many areas of the brain lit up. She was told that the only other activity producing this degree of effect was playing a musical instrument. In lockdown, I was recommended DUOLINGO. It's a free on-line language learning platform and offers around 20 languages, all the usual ones and some lesser known ones. It's very user-friendly, quite gimmicky but fun. You sign up to whatever time you want to give - I just commit to ten minutes a day, doing more when I feel like it. I've been going for 15 months.
There is good evidence from the general population that learning a new second or third language as an adult increases your cognitive reserve and delays the onset of dementia. I have little doubt the reason for this is that learning new things stimulates programmes for the brain to produce new synapses and connections which are neuroprotective. This will almost certainly apply to MS. So yes, learning a new language is a form of cognitive exercise.
I have just been made redundant and my immediate feeling was relief, I have been trying to keep up, and stay on top of things like the old me could, I was only diagnosed two years ago, but it seems MS has been around for me for at least 8years with many brain and spinal lesions. I am now in the situation of thinking what do I apply for? NHS jobs at my pay grade, or do I take a step down to lesser role that I might manage better, but will keep me active and ‘using it’…. I am fortunate to have protected my income with insurance prior to diagnosis, but I am 34 and not ready to ‘retire’ …. I think the cognitive element is really not addressed or spoke about enough. Thank you for your blog
I was in very similar boat when my consultancy work dwindled during Covid. Thank goodness for Critical Illness Insurance!
But its not just about money - my work informs my volunteering, gets me out of bed in the morning, gives me more to talk about etc
Check out my comment about Access to Work.
Bizarre as it may sound to somebody who is not on benefits (I am assuming) you CAN get help & support from the Disability Employment Adviser in your local job centre. They have just launched a scheme whereby we can give advise to disabled people even if they are not on Universal Credit. This is new so many people will have not heard of it but it sounds to me what you need to point you in the right direction of what is available in your area.
Thank you so much Prof G, you really have answered my concerns in this newsletter, cognition is my biggest MS problem. I can’t explain how much I appreciate your explanations, thank you, you’re a really a light in the darkness explaining all this mysterious stuff that’s happening to us. I would love to assess and track my cognition on the PASAT test and would initiate whatever rehab is recommended. On the outside I appear really well physically but I’ve lost a lot of my social stamina and work confidence since having MS because of the dementia symptoms. In fact I haven’t returned to work for various motherhood reasons but cognitive function is one of them. Conversations, retrieval of words, short term memory, multi tasking, reading, have all improved massively since my first relapses in 2014/15 but the residual ongoing deficit is still a serious knock to the confidence, and I experience a lot of my fatigue from having to really focus on those cognitive processes when I’m around others - it’s exhausting. It’s invisible to others and as non-medical people it’s really hard to define and explain and understand the discreet cognitive processes which we struggle with so oftentimes it’s much easier to not explain to others at all! In terms of self management, I think it would help me to have a specific medical name for some of these cognitive deficits, to build my own cognitive profile, so I can actually interrogate the internet and help myself to find the things I can work on to improve - otherwise it feels like a needle in a haystack. Incidentally my sister who has MS finds it cognitively too hard to process these newsletters 😭
When I started complaining of cognitive issues I had the PASAT test done and it was decided I had no issues. However, this was not suprising given my background
1) Cambridge maths graduate
2) I had been volunteering as maths support at my local primary school for several years.
As a result the speed with which I could add any 2 numbers was virtually instantaneous.
Having to add to the previous number was something I had to concentrate on, but was significantly easier than the vast majority of the population would find. It did not really count as multi tasking to me and unfortunately the results masked an ongoing issue.
All cognitive tests need to baseline against a persons background and ability or appropriate peer group, not just the general population.
I've had a similar experience. A lot of these cognitive tests seem to use addition and subtraction as their mental stress activity, so those of us who do lots of math regularly aren't very challenged, which can mask limitation in other areas. My understanding is the best use of these tests for measuring modest cognitive changes is to track your own performance over time, ideally started well before you have any decline. Unfortunately, the tests aren't easily available or regularly given, so usually we get tested the first time when we present to a neurologist with concerns, and never or infrequently after that. And then there's no relevant baseline or tracking.
Important topic as research shows MS often leads to people giving up work earlier than necessary. MS Society did comprehensive report on how MS thus creates poverty and Prof Gs work on "social capital" shows the effect of the resulting isolation. But that does NOT have to be the case. If you do want to work then there are solutions.
I have just been trained by DWP as a Disability Employment Adviser and I learnt about services such as Access to Work which can help PWMS. They can provide support - such as a support worker to help you with things you find difficult, equipment etc ...
Anyone with MS can apply regardless of your employment status (eg self employed or employed), regardless of your income, savings etc.
When I was self employed (pre covid) I claimed for several years and it enabled me me to keep working. I think it is one of the "best kept secrets".
Lots of us have been recruited & trained recently and are wanting to help ... so do check out Access to Work if your MS means you are having trouble keeping your job or finding work.
Thank you for this. I will def check it out. It gives me some hope!
Thank goodness for insurance is right, it certainly will keep the wolves from the door and it provides great peace of mind, but it is well below my earning capacity, I am highly skilled and experienced in my field and whilst I do know in my heart of hearts that I am slower and more forgetful and I do have to work twice as hard just to do what I used to do with ease… I also know I love the structure, the routine the excitement of getting stuck in to work, and the sense of efficacy it gives me, so I do not think I will give up just yet, but I will have to diversify or reduce hours or something 🙈🙈
I’m an artist, do you think they would agree to give me a support worker, to do the things I can’t do, like needing two hands?
Not sure. Ask your GP to refer you for a community OT (occupational therapy) assessment and they will determine what is needed.
Caregiver here. This possibly explains the troubling behaviors I see. Now I am informed and can encourage her neuro to test for this. >>> Prof G, you are covering all the right topics in these newsletters. I know it takes effort and precious time. 1000 thanks! You are essentially extending your care to 1000s more patients, empowering us, and enabling us to share vital info with our neuros and have further discussions.
Clearly, one of the mental tasks I do is check and read the posts and articles by Dr. G., Mouse Doctor and all the others. Sometimes they are long and drawn out, but if the topic interests me, I stay with it to see what there is. I'll look up many of the references too. I post a reply here and there, but they need to reviewed first. I do quite a bit that involves mental skills, from discussions with friends to researching antiques online and later selling them. Back 25 years ago, it did become evident that I had lost some of the ability to think and respond quickly (on my feet), with humor and insight, and to tie things together to make a point, when I was teaching PSY 101 in college. Now I see my cousin's (who also has MS) daughter, going down a similar career path and I spent much of the week thinking about how I would cleverly generate interest in Psychology, teaching my first day. Oh, the good old days!
Memory was a bit lacking and I had problems overseeing busy traffic situations so there was something there. These actually improved a lot. I did learned to play bridge online to improve my memory 2 years ago. Really love the game and got really good at it. Only positive thing that came from my DX is this new hobby. So far I have non active PPMS with 3 lesions in the spinalcord. I can not walk more than 300meters and everyday is filled with cramps. I guess I do need to be a bit more thankful for my working brain so far. Next appointment with my neurologist I will ask about BVL and SCVL and SELS and everything I learned here :) Might even ask if I can do a SDMT again, which I did 1.5 years ago see how they compare.
I've noticed cognitive decline over the years, but I'm finding it extremely challenging to sort out if it is MS, age, stress or something else. I talk to my neurologists about foggy headedness, memory challenges, and decision-making challenges ("analysis paralysis"), but even they aren't sure if it's MS or stress/anxiety. I've been considering trying anxiety meds so I can either confirm or rule that out as a cause. I've been wishing for a better way to sort out the sources of cognitive issues, so I'll check out these tests.
In the meantime, I play a lot of complex board games (now virtually) and have been watching Netflix shows in Spanish with English subtitles to try to use my brain in different ways.
I play poker to keep my mind sharp and build up cognitive reserve to help defend against this. Also reading. While there have been no clinical trials yet I remain firmly convinced that playing poker helps as it forces you to do quick mental math in your head and think through on multiple strategic levels simultaneously. Highly recommend as a fun way to protect your brain!
Neurologists need to do their part on this. I am a member of several large support groups for caregivers of people with MS - as my spouse has advanced MS that’s both very physical, and cognitive - and no one who comes to our group as a new member knows that MS can cause cognitive deficits approximating dementia in up to 40% of patients. Doctors don’t want to have this conversation with young patients.
I have had MS for over 40 years and have significant cognitive deterioration and found your latest news letter very interesting. What is the relationship between medication for treating symptoms, e.g. Baclofen and loss of cognition especially short term memory loss?
Yes, baclofen and other sedating symptomatic treatments make cognitive problems worse. This is why when pwMS stop oral baclofen and other antispasticity agents when they have a baclofen pump put in their heads clear.
Please note that intrathecal (into the CSF space around the spinal cord) baclofen via a baclofen pump only targets the spinal cord and does not affect the brain.
It’s been a busy morning, registered for French and bridge online. This brain of mine needs exercising. Thank you Prof G, wonderful as usual.xx
And I’ve just apply for support worker through DWP. Fingers crossed.
I have a job that's similar to software development, and it's very based in puzzle solving, so I've never understood the advice that I should do puzzles in my free time so I will be able to keep doing my job. Do you think it's job dependent i.e most people don't have puzzle solving jobs, or have they pinpointed something in particular about sudoku, etc that makes the difference?
Late to the party. What is "pwMS"?
People with MS. This used to be called MSers on the blog but some people apparently found this offensive.
Felicity, many thanks! Yes, I have cognitive issues after 50+ years with MS.
I am 18 years in but unfortunately started to have these issues 4-5 years after diagnosis. I wish there were more we could do and better ways to document and treat this clinically. I am glad the newly diagnosed have so many options now. They will struggle with fewer of these things due to better treatment options. 🙂
Hi Prof G, where can I find PASAT to test myself online?
I have just done a google search and there are some online offerings, but I am not sure if they have been validated or not. We have developed an online cognitive test that we are validating. I will let you know about it in the future.
Hi what has come of this? Can international pwms access online testing now? Thanks