Sorry me again! Just wanted to elaborate on the cognitive bit;
I feel that MS cognitive issues are often referred only as 'cognitive fog', which is assumed a relatively mild deficit or as a mild impairment across one's normal abilities, much like having a hangover or a poor nights sleep. But cognitive problems in MS are much more specific and can be devastating and very frightening. It really is not often described how different MS cognitive problems manifest and affects people, nor what pwMS can do about it if anything.
I think 'cognitive fog', as I think I'm interpreting, is something that can sometimes be assisted through holistic approaches such as HRT, B12, sleep and exercise. But what about other cognitive problems caused by MS (sorry I don't know the medical terms for these things...) but stuff like loss or difficulty with speech, word recall, reading problems and language recognition issues, severe short-term memory loss, sequencing problems....stuff that patients with stroke may also experience. I might be wrong, but it appears to me that there is a lot of relevant information, support, assessments and therapies which are offered to stroke patients to manage their cognitive difficulties, which MS patients simply don't have. Why is that?
I would like to add one to the three core symptoms that tend to be poorly managed- UTIs. I have had 7 months of back to back UTIs and 15 lots of antibiotics - I'm currently failing miserably to manage the interface between my GP practice, my urologist, neurologist, 2 different microbiology departments in 3 different areas - and they all seem incapable of talking to one another. I'm a bioscientist - god knows how Joe Blogs manages!
- I have always felt that people diagnosed with MS (and their carers/family) should have like an introductory education film on what MS really is and then provided with the information on MS selfie to drill down on areas of focus that might be relevant. Often pwMS are expected to educate themselves the minute they are diagnosed , they have tons of questions, a lot of wildly variable symptoms, choices they are expected to make on medication and it’s overwhelming. It’s also assumed that resources already out there can provide that education for MS patients - but they are often severely lacking and simply provide a stereotypical broad stroke without any of the practical detail of coping and managing with symptoms - which thankfully your MS Selfie really does extremely well. Thank you!
- it’s hard to articulate many of the weird symptoms of MS and these need to be described and detailed in one place (like MS Selfie) in order for pwMS to identify and recognise what these symptoms actually are and attribute them to MS in the first place. Without this, it’s incredibly easy to feel like your symptoms are imagined or a product of MH. It’s essential that pwMS have enough understanding of what can occur with MS in order to have the vocabulary and validation for seeking help - even self-help.
- yes agreed that cognitive fog is tied to sleep and fatigue. However cognitive problems can hit first and yet from most sources of information MS is still talked about as a mobility and physically disabling condition, even in yearly reviews. It’s assumed that dementia symptoms are more advanced MS rather than at onset and I personally found it therefore very hard to express how difficult I found my initial symptoms, as family and friends just didn’t recognise or anticipate my problems as MS!
- “my beautiful broken brain” was an amazing film I watched about a young woman who experienced a stroke. https://m.imdb.com/title/tt3815136/
It was the only thing I’ve found since having MS that resonated and described my cognitive problems. It was so powerful to have found it and I recommend watching!
Sleep would be a great starting point. I know that without effective treatment for nerve pain, my sleep is greatly diminished. Even when I am just uncomfortable and can ignore it in the day, it effects my sleep quality. That and a relaxation app to help with brain whirr. Night is when I am still and quiet enough to think.
As PJ said, UTI info would help too. Just had delivery of Cranberry extract to give that a try. Waiting for antibiotics as I write. Was in hospital with sepsis last year so I now know how important it is.
yes please, flow-charts and click-through algorithms are what I have always wanted since first diagnosed 10 years ago
- not because i want a solution prescribed to me, but so that i can carefully think through my self-care plan
- i want to be able to compare options and whole branches and drill down into each one
- even before my cognitive issues when i was at my best, i suspect that this would have been a too complex decision-tree for me to hold in my head all at once
- i would not (as suggested) print these out and show them to my Neurologist - they would be insulted if i tried this - but it would just be for me to get things clear in my own head
Good sleep is critical to functioning & maintaining a sensible weight. I suspect my sleep (insomnia) issues are more to do with peri menopause (lovely can of worms) than MS, (although the MS affected bowel and bladder play their part too). Looking forward to anything you can do to help here.
Cognition - I am still struggling to learn to pace my brain, and when I get it wrong, it basically shuts now all cognitive functions and I just need to lie down & rest with my eyes closed. This does not usually mean sleep, it’s just my brain needing to stop being stimulated.
Would love not to have to pace my brain, or have tools & tips for identifying when I need to.
I’d like more help with pain management- how many of us have heard “MS doesn’t cause pain” ... well mine does, so I wish it was better understood so I don’t risk being labelled a drug-seeker in my attempts to get help.
If there were treatments (treatments to address smouldering MS + the underlying EBV infection) which stopped the unrelenting worsening (not just stopping relapses), then most MS issues would improve eg better sleep, more incentive to exercise, better chance of staying in employment (good for cognitive function / self esteem etc). Much more difficult to “self-manage” when faced with a future of ever increasing disability. My friend in her late 50s operates her electric wheelchair with the one finger which still works. Her husband is drained from 30 years of MS. Self management shouldn’t be the way for them. They need proactive support from the health care system. I can understand the concept of self management with T2D, but advanced MS is a totally different ball game. Patients don’t need fancy graphics or route maps. They need one phone number (or an Amazon type page) so they can request anti-biotics for a UTI, a physio appointment or visit, CBT, appointment with a continence adviser….
Hello, the path of care has been very difficult and now I’m living in a care home with people with dementia etc. The transition has been heartbreaking but necessary.
For me, I think better than flowcharts would just be education "campaigns" for pwMS that insomnia/fatigue/cognition are worth trying to treat. If you're trying to do your own research on say, fatigue, what you tend to learn is "80% of pwMS have it, we don't know what causes it, the medications are very hit or miss" whereas the reality is that there are a lot of NPIs that can help, and there are other causes to rule out! I spent a year going "well it sucks that I have fatigue forever now" and it turned out it was a B12 deficiency that could have been addressed much earlier if I had proactively sought to "treat" my fatigue. I get a newsletter from the Accelerated Cure Project (https://www.acceleratedcure.org/pastnewsletters) that has a great (not being facetious) format of "this is a bad thing that can happen to you with MS" followed by "it has been quite successfully treated with X/Y/Z for most people".
Gavin I think the idea of a self management flowchart is a really good idea. However, I wonder whether the cognitive issues might be addressed as a priority? It seems there is no advice offered in this subject and I tell people that I am 50% of the wife I want to be. It is because I can no longer multi-task, a one word interruption to a task renders me having to start from the beginning, an inability to recall movies/books/conversations leaves me like appearing ignorant and dumb. But there is no MS assessment around the severity and because my ‘old’ (natural/pre cognitive decline) levels were rather high achieving ... or so I am told ... apparently nobody would notice my difficulties and nothing is being offered.
Yet as I read the comments from others it seems there are treatments out there.
The impact on life of cognitive challenges is so wide ranging - from relationships to employment possibilities to self esteem issues. I really hope it might be possible for cognitive issues and treatments to become priorities within your flowchart work.
Thankyou for your ongoing writing, research and help with our MS lives.
As a marketer I agree you should focus one one thing for patients but I disagree with sleep. Awith the point that it’s important but to a patient already overwhelmed with a diagnosis telling them to improve sleep when they probably are already trying is demoralizing and will create a feeling of futility vs empowerment.
In talking to patients the number one keeping me up at night is dmd choice. All the sleep in the world doesn’t matter if you have highly active ms but are treating it with glatimer because “it’s safe”.
I want to stop hearing things like
“I prefer a pill” (in WHAT other category is it acceptable to prioritize form over efficacy when there is a meaningful difference “
“I don’t know how to choose between 10 options “ (no one needs that many options- amongst the highest efficacy there are less)
Or
“I don’t want side effects “ (ok does anyone talk about the long term side effect of NOT treating? Like you know blindness incontinence cognitive changes, anything impacted by undertreated ms)?
I think the idea of self management options like sleep and exercise (could argue exercise should be first) should be reserved only for those already on a high efficacy treatment but first we have much communications work to do so patient peer advisors no longer hear these most frequent comments at diagnosis.
Once a patient is on am effective treatment they willl also naturally educate them on other optimizations it’s a snowball effect.
First everyone has to feel urgency and take it more seriously.
Sleep was, and still is to some extent, a major issue for me over the past year. I found some excellent information from the podcast The Huberman Lab with Dr. Andrew Huberman. He has a few episodes dedicated specifically to optimizing sleep. The episode from August 8, 2022 was most helpful for me.
Thank you for addressing this. I find your work and information so helpful.
Can only agree with the self management approach. I’ve long had the view that you need to be your own doctor. It really is a team effort though, working with your GP to Neurologist etc when they hold the keys to vital medications. However time is where you have the big advantage. Reading, learning etc. For me the Mind, Exercise, Diet, Sleep or MEDS approach has been particularly beneficial overall but it did take me a long time to get there. The use of Cladribine was certainly the game changer for me though. Just a pity it took so long to get it.
Yes, and I have researched the area myself. However at my last consultant appt I was told "I'd have to just put up with it"! Where are these specialist neuro-urology units you refer to in your newsletter? Do they exist in the UK?
Is there a need for MS self-management flowcharts or algorithms?
Sorry me again! Just wanted to elaborate on the cognitive bit;
I feel that MS cognitive issues are often referred only as 'cognitive fog', which is assumed a relatively mild deficit or as a mild impairment across one's normal abilities, much like having a hangover or a poor nights sleep. But cognitive problems in MS are much more specific and can be devastating and very frightening. It really is not often described how different MS cognitive problems manifest and affects people, nor what pwMS can do about it if anything.
I think 'cognitive fog', as I think I'm interpreting, is something that can sometimes be assisted through holistic approaches such as HRT, B12, sleep and exercise. But what about other cognitive problems caused by MS (sorry I don't know the medical terms for these things...) but stuff like loss or difficulty with speech, word recall, reading problems and language recognition issues, severe short-term memory loss, sequencing problems....stuff that patients with stroke may also experience. I might be wrong, but it appears to me that there is a lot of relevant information, support, assessments and therapies which are offered to stroke patients to manage their cognitive difficulties, which MS patients simply don't have. Why is that?
I would like to add one to the three core symptoms that tend to be poorly managed- UTIs. I have had 7 months of back to back UTIs and 15 lots of antibiotics - I'm currently failing miserably to manage the interface between my GP practice, my urologist, neurologist, 2 different microbiology departments in 3 different areas - and they all seem incapable of talking to one another. I'm a bioscientist - god knows how Joe Blogs manages!
Thank you prof G!
- I have always felt that people diagnosed with MS (and their carers/family) should have like an introductory education film on what MS really is and then provided with the information on MS selfie to drill down on areas of focus that might be relevant. Often pwMS are expected to educate themselves the minute they are diagnosed , they have tons of questions, a lot of wildly variable symptoms, choices they are expected to make on medication and it’s overwhelming. It’s also assumed that resources already out there can provide that education for MS patients - but they are often severely lacking and simply provide a stereotypical broad stroke without any of the practical detail of coping and managing with symptoms - which thankfully your MS Selfie really does extremely well. Thank you!
- it’s hard to articulate many of the weird symptoms of MS and these need to be described and detailed in one place (like MS Selfie) in order for pwMS to identify and recognise what these symptoms actually are and attribute them to MS in the first place. Without this, it’s incredibly easy to feel like your symptoms are imagined or a product of MH. It’s essential that pwMS have enough understanding of what can occur with MS in order to have the vocabulary and validation for seeking help - even self-help.
- yes agreed that cognitive fog is tied to sleep and fatigue. However cognitive problems can hit first and yet from most sources of information MS is still talked about as a mobility and physically disabling condition, even in yearly reviews. It’s assumed that dementia symptoms are more advanced MS rather than at onset and I personally found it therefore very hard to express how difficult I found my initial symptoms, as family and friends just didn’t recognise or anticipate my problems as MS!
- “my beautiful broken brain” was an amazing film I watched about a young woman who experienced a stroke. https://m.imdb.com/title/tt3815136/
It was the only thing I’ve found since having MS that resonated and described my cognitive problems. It was so powerful to have found it and I recommend watching!
Sleep would be a great starting point. I know that without effective treatment for nerve pain, my sleep is greatly diminished. Even when I am just uncomfortable and can ignore it in the day, it effects my sleep quality. That and a relaxation app to help with brain whirr. Night is when I am still and quiet enough to think.
As PJ said, UTI info would help too. Just had delivery of Cranberry extract to give that a try. Waiting for antibiotics as I write. Was in hospital with sepsis last year so I now know how important it is.
yes please, flow-charts and click-through algorithms are what I have always wanted since first diagnosed 10 years ago
- not because i want a solution prescribed to me, but so that i can carefully think through my self-care plan
- i want to be able to compare options and whole branches and drill down into each one
- even before my cognitive issues when i was at my best, i suspect that this would have been a too complex decision-tree for me to hold in my head all at once
- i would not (as suggested) print these out and show them to my Neurologist - they would be insulted if i tried this - but it would just be for me to get things clear in my own head
I 💗the holiday photo. You really must switch off more and take some lighter reading on holiday.
Self care first for all of us . Great News letter all the same. 😁
Good sleep is critical to functioning & maintaining a sensible weight. I suspect my sleep (insomnia) issues are more to do with peri menopause (lovely can of worms) than MS, (although the MS affected bowel and bladder play their part too). Looking forward to anything you can do to help here.
Cognition - I am still struggling to learn to pace my brain, and when I get it wrong, it basically shuts now all cognitive functions and I just need to lie down & rest with my eyes closed. This does not usually mean sleep, it’s just my brain needing to stop being stimulated.
Would love not to have to pace my brain, or have tools & tips for identifying when I need to.
I’d like more help with pain management- how many of us have heard “MS doesn’t cause pain” ... well mine does, so I wish it was better understood so I don’t risk being labelled a drug-seeker in my attempts to get help.
If there were treatments (treatments to address smouldering MS + the underlying EBV infection) which stopped the unrelenting worsening (not just stopping relapses), then most MS issues would improve eg better sleep, more incentive to exercise, better chance of staying in employment (good for cognitive function / self esteem etc). Much more difficult to “self-manage” when faced with a future of ever increasing disability. My friend in her late 50s operates her electric wheelchair with the one finger which still works. Her husband is drained from 30 years of MS. Self management shouldn’t be the way for them. They need proactive support from the health care system. I can understand the concept of self management with T2D, but advanced MS is a totally different ball game. Patients don’t need fancy graphics or route maps. They need one phone number (or an Amazon type page) so they can request anti-biotics for a UTI, a physio appointment or visit, CBT, appointment with a continence adviser….
Hello, the path of care has been very difficult and now I’m living in a care home with people with dementia etc. The transition has been heartbreaking but necessary.
For me, I think better than flowcharts would just be education "campaigns" for pwMS that insomnia/fatigue/cognition are worth trying to treat. If you're trying to do your own research on say, fatigue, what you tend to learn is "80% of pwMS have it, we don't know what causes it, the medications are very hit or miss" whereas the reality is that there are a lot of NPIs that can help, and there are other causes to rule out! I spent a year going "well it sucks that I have fatigue forever now" and it turned out it was a B12 deficiency that could have been addressed much earlier if I had proactively sought to "treat" my fatigue. I get a newsletter from the Accelerated Cure Project (https://www.acceleratedcure.org/pastnewsletters) that has a great (not being facetious) format of "this is a bad thing that can happen to you with MS" followed by "it has been quite successfully treated with X/Y/Z for most people".
Gavin I think the idea of a self management flowchart is a really good idea. However, I wonder whether the cognitive issues might be addressed as a priority? It seems there is no advice offered in this subject and I tell people that I am 50% of the wife I want to be. It is because I can no longer multi-task, a one word interruption to a task renders me having to start from the beginning, an inability to recall movies/books/conversations leaves me like appearing ignorant and dumb. But there is no MS assessment around the severity and because my ‘old’ (natural/pre cognitive decline) levels were rather high achieving ... or so I am told ... apparently nobody would notice my difficulties and nothing is being offered.
Yet as I read the comments from others it seems there are treatments out there.
The impact on life of cognitive challenges is so wide ranging - from relationships to employment possibilities to self esteem issues. I really hope it might be possible for cognitive issues and treatments to become priorities within your flowchart work.
Thankyou for your ongoing writing, research and help with our MS lives.
As a marketer I agree you should focus one one thing for patients but I disagree with sleep. Awith the point that it’s important but to a patient already overwhelmed with a diagnosis telling them to improve sleep when they probably are already trying is demoralizing and will create a feeling of futility vs empowerment.
In talking to patients the number one keeping me up at night is dmd choice. All the sleep in the world doesn’t matter if you have highly active ms but are treating it with glatimer because “it’s safe”.
I want to stop hearing things like
“I prefer a pill” (in WHAT other category is it acceptable to prioritize form over efficacy when there is a meaningful difference “
“I don’t know how to choose between 10 options “ (no one needs that many options- amongst the highest efficacy there are less)
Or
“I don’t want side effects “ (ok does anyone talk about the long term side effect of NOT treating? Like you know blindness incontinence cognitive changes, anything impacted by undertreated ms)?
I think the idea of self management options like sleep and exercise (could argue exercise should be first) should be reserved only for those already on a high efficacy treatment but first we have much communications work to do so patient peer advisors no longer hear these most frequent comments at diagnosis.
Once a patient is on am effective treatment they willl also naturally educate them on other optimizations it’s a snowball effect.
First everyone has to feel urgency and take it more seriously.
Thanks for reading my sopabox :)
Sleep was, and still is to some extent, a major issue for me over the past year. I found some excellent information from the podcast The Huberman Lab with Dr. Andrew Huberman. He has a few episodes dedicated specifically to optimizing sleep. The episode from August 8, 2022 was most helpful for me.
Thank you for addressing this. I find your work and information so helpful.
Can only agree with the self management approach. I’ve long had the view that you need to be your own doctor. It really is a team effort though, working with your GP to Neurologist etc when they hold the keys to vital medications. However time is where you have the big advantage. Reading, learning etc. For me the Mind, Exercise, Diet, Sleep or MEDS approach has been particularly beneficial overall but it did take me a long time to get there. The use of Cladribine was certainly the game changer for me though. Just a pity it took so long to get it.
Yes, and I have researched the area myself. However at my last consultant appt I was told "I'd have to just put up with it"! Where are these specialist neuro-urology units you refer to in your newsletter? Do they exist in the UK?