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.
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
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.
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.
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.
An all too real part of MS and one not often talked about. Not even from my past neurologists… I’ve had MS for 15+ years, have been complaining of brain fog for the last 3-4 years, and only learned this was part of my disease after starting with a new neurologist THIS year. It explained so much and is devastating.
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?
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?
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.
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
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.
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.
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.
An all too real part of MS and one not often talked about. Not even from my past neurologists… I’ve had MS for 15+ years, have been complaining of brain fog for the last 3-4 years, and only learned this was part of my disease after starting with a new neurologist THIS year. It explained so much and is devastating.
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?
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
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"?