Does your neurologist walk the talk?

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Thanks to Daniel Kahneman and Amos Tversky behavioural psychology and behavioural economics have become very sexy. Kahneman & Tversky have spawned an industry of nudge theorists; people who devise ways of getting populations of people to do things that are good for them.

People with MS are no different from the general population when it comes to doing what they are told to do. We have major issues getting MSers to adhere to lifestyle interventions.

In this long-term follow-up study below MSers who report higher levels of health promotion activities and greater functional ability tend to experience lower levels of fatigue, pain and sleep disturbance and higher levels of cognitive abilities in subsequent years.

Is this the chicken or the egg; i.e. did MSers who were simply doing better more likely to engage in healthy activities compared to those doing less well? The only way to sort this out is to do a randomised controlled trial, which is virtually impossible for lifestyle interventions. What we need are ways of getting MSers to adopt a Brain Healthy lifestyle as part of their routine management plan. The following is the list of things to do:

  1. Smoking – if you are a smoker stop smoking.
  2. Exercise – try and do 5x 30 min aerobic sessions per week. If this is too hard and you are not too disabled you can try HIIT (high-intensity interval training) instead.
  3. Diet – eat a healthy diet. My philosophy is to eat ‘real-food’ that is culturally compatible with your family and friends. Avoid ‘fad diets’ and processed foods, particularly processed carbohydrates.
  4. Alcohol – don’t consume too much alcohol, it is neurotoxic even in relatively small amounts.
  5. Sleep – please make sure you don’t have a sleep disorder and make sure you get good quality sleep.
  6. Comorbidities – make sure you are screened for co-morbidities (hypertension, diabetes, impaired glucose tolerance, high cholesterol levels and dyslipidaemia) and get them treated.
  7. Infections – try and make sure you don’t get recurrent avoidable infections. The big one in MSers is UTIs.
  8. Concomitant medications – review your medications and try and reduce your anti-cholinergic burden as much as possible.
  9. Stress, depression and anxiety –  if you suffer from these get them treated and managed actively. If you haven’t tried mindfulness therapy it is worth giving it a go.
  10. Social capital – work on your social networks. Make sure you have time for friends and family.
  11. Menopause – if you are menopausal you may want to consider hormone replacement therapy. The evidence on whether HRT makes a difference to MS outcomes is weak but interesting enough to consider it if you are a woman.
  12. Wellness – this not only refers to your lifestyle but how it relates to the environment and your spirituality. Many argue you need to live in harmony with the environment to be truly well. I tend to agree. For example, my problem is my carbon footprint, which is impacting on my wellness.

If you have any suggestions to help other MSers with adhering to these principles, or you have any other to add to the list, please feel free to comment. Don’t be shy.

I also think you need to find yourself a neurologist and/or HCP who walks the talk. It is difficult to take a neurologist who is obese, smokes and clearly does not look after himself or herself, seriously when they tell you to improve your lifestyle. Or maybe I am wrong?

Becker et al.  Functional and health promotion predictors of PROMIS® scores in people with multiple sclerosis. Health Psychol. 2019 May;38(5):431-434.

OBJECTIVE: The purpose of this study was to examine the impact of perceived functional abilities and health promotion activities on subsequent symptom experience among those who have lived with multiple sclerosis (MS) for many years.

METHODS: This longitudinal mailed survey study examined Health Promoting Lifestyle Profile II (HPLP) scores and MOS SF 36 scores as predictors of PROMIS® Pain Interference, Pain Intensity, Fatigue, Sleep Disturbance, and Applied Cognition Abilities Scoresamong 260 adults with MS. The community-dwelling sample was initially recruited from the mailing list of the MS Society in a large southwestern state. Respondents were predominantly female, with an average age of 67 years. They had been diagnosed an average of 30 years. Forty per cent reported relapsing-remitting MS, and 41% have the more severe progressive form of the disease.

RESULTS: HPLP and SF 36 Role Physical, Role Emotional, and Social Function scores assessed in 2013 were moderately correlated (r > .30) with PROMIS® Fatigue and PROMIS® Cognitive Abilities scores measured in 2014 and were somewhat predictive of PROMIS® Pain and Sleep Disturbance scores (r > .20). These results were replicated in an analysis using data from Years 2016 and 2017.

CONCLUSIONS: Findings suggest that those who report higher levels of health promotion activities and greater functional ability may experience lower levels of fatigue, pain, and sleep disturbance and higher levels of cognitive abilities in the subsequent year.

About the author

Gavin

Professor of Neurology, Barts & The London. MS & Preventive Neurology thinker, blogger, runner, vegetable gardener, husband, father, cook and wine & food lover.

45 comments

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  • Not directly relating to the spirit of your post, but worthwhile asking:

    Do you have a view on Lipoic Acid supplementation? (educated guess on the benefit/downside at this stage).

      • Precisely why I am asking the question – and why I am referring to “educated guess” at this stage.

        What would be the downside of supplementing over the counter whilst awaiting more trial results?

  • In think an obese and smoking neurologist is might better understand how hard it is to endure the pain of those changes. I gained a normal weight and stopped smoking when diagnosed, but I still (7 years later) resent how a couple of ultra fit consultants talked to me.

    • Just playing Devil’s advocate. I am aware of an MS HCP who is a smoker who avoids giving patients advice about stopping smoking. Why? I suspect this person feels a bit hypocritical when dishing out advice on not smoking.

      • Yes, I know of this person and have had the urge to ask why they smoke. But the job can be stressful, so I can predict the answer and its none of my business really.

        • Another reasonable position to take is a liberal one, i.e. it is up to the individual to live their life the way that want to, provided it does not impact on anyone else. Therefore, who are we to tell patients to stop smoking and to exercise, etc.?

          • It’s definitely okay to present the facts about outcomes of smokers with MS compared to nonsmokers, (as is done on this blog). If it said with a tone of compassion and empathy not the usual shame and blame.

            On the surface, it sounds like the doctor trying to avoid being a hypocrite, could make some progress by starting the conversation with an acknowledgment a little bit of listening and understanding. But yeah, NHS don’t allow enough time for that.

  • “If you have any suggestions to help other MSers”

    Fasting and/or exercise

    “Food scarcity has been a driving force for the evolution of nervous systems”

    IMS (Intermittent metabolic switching) and optimization of brain health

    It has become clear that sedentary overindulgent lifestyles in which IMS is lacking preclude optimal brain health. The rapid increase in overweight and obese individuals, including children, during the past 40 years is contributing to an emerging ‘epidemic’ of cognitive impairment and dementia that will intensify in coming decades. As reviewed elsewhere, evidence supporting the latter two statements is strong, and the mechanisms by which lack of IMS adversely affects neuroplasticity and risk of major brain disorders are becoming understood176,177. When rodents are maintained on an obesogenic diet (high fat and sugar) or are genetically defective in leptin signalling and therefore eat excessively, they perform more poorly on learning and memory tests than nonobese control animals178–180. Studies of the hippocampus have shown that deleterious effects of obesity on cognition involve impaired synaptic plasticity and neurogenesis, reduced expression of BDNF and local neuroinflammation176–180. IMS, triggered with running-wheel exercise and/or IF, can counteract the adverse effects of excessive energy intake on hippocampal plasticity6. Although a chronic positive energy balance is not optimal for brain health and may increase the risk of neurological disorders, including anxiety, depression, AD and PD, a chronic negative energy balance (starvation and/or excessive exercise) is also detrimental for health and survival. It therefore becomes important to establish parameters of IMS (frequency, duration and ‘intensity’) that promote optimal brain function and disease resistance.

    Intermittent metabolic switching, neuroplasticity and brain health

    Mark P. Mattson1,2, Keelin Moehl1, Nathaniel Ghena1, Maggie Schmaedick1, and Aiwu Cheng1

    1Laboratory of Neurosciences, National Institute on Aging Intramural Research Program, Baltimore, Maryland 21224, USA

    2Department of Neuroscience, Johns Hopkins University School of Medicine, Baltimore, Maryland 21205, USA

    doi:10.1038/nrn.2017.156.

  • Menzies Institute for Medical Research

    https://ms.mooc.utas.edu.au/

    Has a course about understanding ms in it they say :

    Disease management is a group effort

    Effective disease management is done by a group or a team.

    The person with MS is the team captain. They recruit other people onto their team for the expertise and advice they can contribute.

    Just like with any other team, an MS disease management team works best when there is open, honest communication and a good plan.

    This is where disease management plans come in.

    I think every pwms and every neuro sould read this

    Obrigado

    • Spot on, which is why we have launched our social capital initiative and had our 3rd meeting today. We want to reconfigure MS services around this model.

    • I couldn’t agree more. I am a true believer that I need to be in charge of managing my healthcare and that I need several people on my team for optimal health outcomes. Always a work in progress, though, this is how I go about managing my MS – I am the team leader, and my team is comprised of various doctors & specialists who have been chosen by me. The core group is my neurologist, psychologist, PCP, infusion nurses, gynecologist, neuro-ophthalmologist & trainer. They are not a part of the same medical group or system, though – I am in the U.S. & have a lot of options, but as I live in a rural area, my neurologist is near a major city, my neuro-ophthalmologist is in a suburban area, and many of my other specialists are local. Communication of necessary information is usually made via fax, but my neurologist & specialists will speak to anyone I ask. It’s not a perfect system, and my doctors & specialists don’t actively come up with plans together, but this arrangement has been working for me for a very long time. JSV

  • Interesting point about menopausal women. It would be great to see some studies carried out on the beneficial effects of oestrogen on MS. A number of successful HRT products have been withdrawn from the market ( eg Low dose Prempak C by Pfizer) & most GPs seem unable to tailor doses for patients.

    • Yes, the point re menopausal women w/ MS using HRT has piqued my interest, as well. I am currently peri-menopausal but have been following the estriol studies for years and have always wondered about the appropriate dosage. Is there anything I can do now? And once I am in menopause, what’s an appropriate HRT protocol?

    • I have been on HRT since 2006. Following hysterectomy aged 44. I came off it when a GP got nervous over the breast cancer link, this turned out not to be wholly correct. I had no extra risks for this and after a definite MS slide I went back on HRT a year later. Yes, I rely on aids etc and can’t walk far, but the slide has slowed, and I’m better on it. and I’m taking HRT until I die. I’m 58 so hopefully a couple more decades.

  • Fasting is very inexpensive

    You just dont eat= no money spend 🙂

    Hunger is protective

    Diverse metabolic reactions
    activated during 58-hr fasting
    are revealed by non-targeted
    metabolomic analysis of human
    blood

    During human fasting, metabolic markers, including butyrates, carnitines, and branched-chain amino
    acids, are upregulated for energy substitution through gluconeogenesis and use of stored lipids. We
    performed non-targeted, accurate semiquantitative metabolomic analysis of human whole blood,
    plasma, and red blood cells during 34–58 hr fasting of four volunteers. During this period, 44 of ~130
    metabolites increased 1.5~60-fold. Consistently fourteen were previously reported. However, we
    identified another 30 elevated metabolites, implicating hitherto unrecognized metabolic mechanisms
    induced by fasting. Metabolites in pentose phosphate pathway are abundant, probably due to demand
    for antioxidants, NADPH, gluconeogenesis and anabolic metabolism. Global increases of TCA cyclerelated
    compounds reflect enhanced mitochondrial activity in tissues during fasting. Enhanced purine/
    pyrimidine metabolites support RNA/protein synthesis and transcriptional reprogramming, which is
    promoted also by some fasting-related metabolites, possibly via epigenetic modulations. Thus diverse,
    pronounced metabolite increases result from greatly activated catabolism and anabolism stimulated by
    fasting. Anti-oxidation may be a principal response to fasting.

    “Due to the severe protocol of 3 day fasting, only four young healthy people joined the study as the pilot and
    exploratory one”

    Nobody like to fast 🙂

    First, increases of several antioxidants (OA, ergothioneine, carnosine, urate, and xanthine) revealed another
    aspect of metabolic remodeling during fasting

    “Moreover, increased purine/pyrimidine metabolism probably supports not only energy production,
    but also antioxidant synthesis37, and possibly neuroprotection”

    Still going cheap 🙂

    Alternatively, these signaling
    metabolites may promote changes in homeostasis via signaling networks. Interestingly, among nine aging-related
    metabolites that decrease among the elderly7, three (OA, leucine, and isoleucine) greatly increased during fasting,
    implying that fasting might affect also aging-related compounds.

    So fasting is cheap ,antioxidant (anti-ROS), neuroprotective ,and anti ageing

    What more can you get with such a simple intervention

    Ps: “Patients dont like to fast”
    Valter longo
    😦

    https://www.nature.com/articles/s41598-018-36674-9

    • Intermittent fasting of 14 hrs a day is considered normal. Last meal of the day at 5.30pm then breakfast at 7.30 am. A large lunch at 12 noon. No more food until breakfast.

  • Intermittent Fasting Confers Protection in CNS Autoimmunity by Altering the Gut Microbiota.

    Multiple sclerosis (MS) is more common in western countries with diet being a potential contributing factor. Here we show that intermittent fasting (IF) ameliorated clinical course and pathology of the MS model, experimental autoimmune encephalomyelitis (EAE). IF led to increased gut bacteria richness, enrichment of the Lactobacillaceae, Bacteroidaceae, and Prevotellaceae families and enhanced antioxidative microbial metabolic pathways. IF altered T cells in the gut with a reduction of IL-17 producing T cells and an increase in regulatory T cells. Fecal microbiome transplantation from mice on IF ameliorated EAE in immunized recipient mice on a normal diet, suggesting that IF effects are at least partially mediated by the gut flora. In a pilot clinical trial in MS patients, intermittent energy restriction altered blood adipokines and the gut flora resembling protective changes observed in mice. In conclusion, IF has potent immunomodulatory effects that are at least partially mediated by the gut microbiome.

    https://www.ncbi.nlm.nih.gov/pubmed/29874567

  • Effect of Intermittent vs. Daily Calorie Restriction on Changes in
    Weight and Patient-Reported Outcomes in People with Multiple
    Sclerosis

    Randomization to either CR diet was associated with significant
    improvements in emotional well-being/depression scores relative to control, with an average 8-week
    increase of 1.69 points (95% CI: 0.72, 2.66). CR diets are a safe/feasible way to achieve weight loss in
    people with MS and may be associated with improved emotional health.

    DOI: 10.1016/j.msard.2018.05.002

    • Luis – I really appreciate your provision of links and information in reply to posts!

      Picking up on that all important point you make: ‘people don’t like to fast’ – I’d really like to know what is ‘good enough’ I’m utilising the 16/8 IF approach and am now most comfortable (and still easy to live with🙂) at 17/7.

      The different positions taken on what constitutes fasting and what is required to be of benefit is frustrating. I do think more PwMS might adopt IF if they didn’t feel set up to fail. I reckon full on starvation periods is beyond the vast majority of us and in addition may place personal relationships under severe strain!

      • People might find it easier to fast if they got used to a low carb diet first. My understanding is that a drop in blood sugar levels drives hunger so stabilising that first by lowering carb intake might help. I am not a doctor but I have noticed my appetite isn’t so keen after reducing carbs to a minimum.

        • Is fasting not also hazardous in terms of nutrient intake? I feel better now than I ever did with regular meals, lots of fruit and veg, low sugar and salt etc. I’m not a big eater, but after exertion I am VERY hungry, and if I don’t eat well, I have no energy to exercise. In periods of my life when I was too busy to eat well I skipped a lot of meals, went long periods eating very little. I felt relatively unhealthy.

          I think fasting might benefit some, but it’s nothing for me and my PPMS.

        • Thanks for this Luis.
          Whoa! but you are impressive! I’ve been honest with myself and recognise that my wanting the 16/8 model of IF to be effective is due to the fact that I am not driven enough or determined enough to adopt the approach that you have.

  • I was visiting a relative in an inpatient ward recently and the student nurse was very obese. Furniture had to be moved, to make way for the student nurse to get to the patient, sitting next the bed.

    She was a very nice student nurse, friendly and kind but if it was an emergency situation and the student nurse needed access to the patient quickly it wouldn’t be ideal.

    I have come across other nurses who are very obese and it doesn’t set a good example of good health.

  • I do think this is a chicken and egg matter. I think that those with MS who are doing better, can manage to live healthier lives. That’s not true of everyone, but it is for me. I’m not so sick because I don’t try hard enough. I try incredibly hard, but because I’m so sick it looks like failure to those who don’t understand.

    I don’t drink or smoke. Those are very easy for me, because they’re *not* doing things. I can control those.

    But I can’t exercise, I’m bed-bound 90% of the time. I hate it. I was a dancer. But that’s how it is now. I’m barely surviving, if I have the energy I’d go shopping not to a gym. Having the energy to get a shower every day, that’s the dream.

    Diet is an ongoing struggle just to survive. Some days I don’t manage to eat at all.

    Sleep is a daily battle as I have Hypernychthemeral Syndrome.

    As for stress… I am under a staggering amount of stress, but there’s nothing I can do about that. I have bad social capital. Which is complex. Mostly it’s not my fault, I’m doing my best to survive as an autistic person with MS, and mostly people just do terrible things to me. But I try, I try.

    I’m basically a cockroach in terms of what I’ve managed to survive. I should be dead.

    As for suggestions to help others…

    I grew up watching my father die of emphysema. He never stopped smoking. To me, as a child, I felt I was living in a terminal ward watching a long slow suicide. My parents said that there was no point in them stopping smoking. That it was already too late. I felt then, and still feel, that it’s never too late. That my father would have lived longer, and had a better quality of life, if he had done what he could to help himself. If he had stopped smoking. And, also, as a suicidal autistic child already developing MS, it would have helped me to not have to constantly watch him switch between a mask that helped him breathe and a cigarette.

    So, it’s never too late. Never think that you’re already sick, so there’s no point in even trying. It’s always worth doing everything that one can.

    And everything changes. I’m an autistic person trying to learn that. Trying to embrace it.

    New treatments come out, and new help is made available when governments change. Grasp onto any time that you can.

    I know I’m not doing very well, but I try so hard. And remember, everything’s relative. I must learn to not compare myself to people who aren’t dealing with the same struggles. For someone with the obstacles I have, and who has been through what I have, I’m doing remarkably well, even though I’m researching suicide clinics in mainland Europe.

    Research. Find any organisation that will give you any help, and get anything that you can. And, as scary as it is: fight. Fight the NHS, fight the DWP, fight social services, fight your family if you have to. Fight the world.

    As the saying goes: The best revenge is living well.

    • You are inspirational. I totall get what you say about not comparing yourself with others, particularly in the MS world. Personally I try to push myself, but always a pay off. Having a shower, bowel irrigation and 15 minutes of seated cardio exercises takes about 2.5 hours. Will built in tests. And I can stand and walk short distances. I try to eat my calories in an 8 hour period, trying to reduce carbs, equally tough living in a family and doing this. Trying is tiring but we have to be our best, like you are.

  • I think it is very important to get outside and be with nature. If this means a mobility scooter find out where you can hire one. I’m fortunate to have a small nature reserve nearby and have worked with them on accessible gates and paths. It’s truly uplifting to sit and listen and watch nature, birds, trees and flowers. I also think pets are great for us too. When something depends on you there is less self indulgence. Maybe even house plants.

    I think it has to be appreciated too, if you can’t exercise through walking there are You Tube channels. These are free. Or chairs you can propel with arms like the Mountain Trike. Unfortunately pricey though but there is a secondhand market.
    The biggest challenge is keeping motivated against fatigue and and not working right in to it.

    When I was diagnosed in 2001 I was advised by a portly neurologist to conserve my energy during winter. I was a very athletic person, I ignored him and I’m glad I did as I would have soon lost fitness.

By Gavin

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