Are you a MS Sedent? Time to change your behaviour. #ClinicSpeak #MSBlog #BrainHealth
“Sedentary behaviour is well described in MS (see review below). Is sedentary behaviour a consequence of you having MS or does MS cause sedentary behaviour? It is obvious that if you are disabled it is more difficult to exercise. Similarly, if you suffer from exercise induced fatigue you may be reluctant to exercise, or exert yourself unnecessarily, so as not exacerbate your fatigue. Then there is the issue of low mood and poor motivation. MSers have a high prevalence of comorbid depression and this is associated with reduced motivation and drive; people who are depressed simply don’t want to exercise. Then there is deconditioning; the less you exercise the less you are able to exercise because any exertion is tiring. All these factors create a downward spiral that leads to you becoming a sedent. It is often difficult to break the cycle unless you want to break it. What is clear that if you are a sedent you may need help to break the cycle. I suggest asking your neurologists or MS clinical nurse specialist to refer you to a physiotherapist for help. Once you start reconditioning yourself you will be surprised how good it makes you feel. Exercise is one of the most effective treatments we have for a whole range of issues MSers suffer from; low mood, obesity, poor sleep, fatigue, etc. The problem I have is how do I successfully prescribe exercise to my patients in a way that they take me seriously and adhere to the prescription? One thing I am trying to do is to practice what I preach; I personally try to get in 4-5 exercise sessions in a week. It is difficult to tell your patients to exercise if you don’t exercise yourself. Exercise is one component of the Barts-MS Brain Health Challenge; have you signed-up to the challenge?”
Epub: Veldhuijzen van Zanten et al. Sedentary behaviour in people with multiple sclerosis: Is it time to stand up against MS? Mult Scler. 2016 Apr 12. pii: 1352458516644340.
Historically, people with multiple sclerosis (MS) have been considered sedentary, although the actual scientific study of sedentary behaviour in MS did not originate until 2011. Sedentary behaviour, which is conceptually distinct from physical inactivity, is defined as any waking activity characterised by an energy expenditure ⩽ 1.5 metabolic equivalents and in a sitting or reclining posture. In the general population, the volume of sitting time is associated with increased risks of morbidity and mortality, independent of physical activity, and has been suggested to carry a greater risk of mortality than smoking behaviour. There are many symptoms of MS (e.g. mobility disability and fatigue) that could increase the prevalence of sedentary behaviour, and sedentary behaviour may have considerable implications for the development of comorbid conditions prevalent in MS. This review provides a summary of the rates, correlates, consequences and interventions attempting to reduce sedentary behaviour in MS. We provide a research agenda that guides future research on sedentary behaviour in MS. This paper provides a clarion call that it is time to ‘stand up against MS’.
Pain around my rib cage is what stops me along with the fact the walking makes my bladder worse and I get UTIs. Illness makes all the MS symptoms worsen. Basically, exercise is somewhat out for me. Yes, low mood is a problem too, which worsens with any illness. There aren't really any good treatments for the mood, as much as people think that antidepressants work, they aren't that good.
Absolutely!But this can be difficult to do. As with prior articles in this series about MS this again IMHO comes under foundational. Once a person is sedentary that's like a hole one is trying climb out of. Given the nature of MS everyone's hole will also be different in respect to disease impacts. On the family/social side it can also be formidable.Is a sedentary existence with MS destructive? For sure. If anyone reads clinical data on other disease studies have been done. Cardio for example.In life its "Use it or loose" it. With MS in that mix much may already be lost and this is something that "Global Awareness" campaigns REALLY need try and press upon. Many of the global awareness campaigns strategies appear to have no specific targets. Rather than target the patient target the public in respect to the emotional side of MS. Banner out enormous web campaigns with embed's that at least exist more or less have a chance at virality.Nutrition and exercise are one of the proven aspects of feeling better with MS. Studies? Apparently few and far between. But people say they do feel better and this might be considered anecdotal. But at the sametime studies often rely upon patient speak, telling the researchers / clinicians information. So…All said and done. What I do is eat right and I use a Nutribullet machine to get my essentials. I take a multivitamin as well. I use a Total Gym as seen on TV. Its intensity level is easily configured in less than 30 seconds. The machine does wonders for pwMS, I now have 8 friends local who use one. They all say the same thing, "This is the best tool in their MS arsenal". I try to take a walk or use a treadmill as well.This entire article series really is all foundational MS-Speak. It SHOULD be a discussion every clinician has with every MS patient / family. Support groups and facilities should exist and be responsive towards removing the sedentary course. Healthcare professionals need be responsive to patient engagement about more than disease progression or status but life progression and status.The question is HOW does the WORLD of MS get from here to there?We have a great MANY ideas towards that end but there are only two of us trying to "Make things happen". Thats our problem.
oh please. the world is not going to get rid of ms through exercise. activity is important for all human beings, ms or no ms. this is a conversation every doctor should have with their patient – yes, certainly, information is great. but this information (that the sedentary style is killing us silently at bigger rates than smoking) is not unique to ms and is already available anywhere you look – surely it's not a surprise?
ProfG – how do you suggest we include exercise in our routine? My neurologist keeps telling me to work out more. At the same time, he acknowledges that I have 3 jobs — my regular 9-5 job where I sit in front of the computer most of the time, parenting my toddler, and MS (yes, it is a job). I try to go out for walks during my lunch break, but I really can't afford to do more simply because of time and energy constraints.
No solution. We live like rats on a treadmill with no free time. Unless we step back and reassess what is important to us, e.g. health and wellness, we will never make the necessary lifestyle changes. Stress, or perceived stress, clouds our judgement.
TC I think your lunch time walks outside are great with the vit D. I expect you lifting your toddler is good exercise. Housework like vacuuming is good exercise for me.
I work as well and have a rather busy existence. Again, recommend the total Gym. Most days I do 15-20 minutes twice a day. Its fast, easy, folds up in seconds. I can target any part of my body without changing this and that on the machine. I bought mine pre-owned like new for peanuts (under $100).In the morning I have my coffee and short breakfast. Before I head off to work I do a nutribullet drink, kale, walnuts, grapes, half a banana and greens with vanilla almond milk. I want 5 minutes, do a 15 minute workout on the Total Gym. So… its devoting about 30 minutes before going to work.When I get home I may go for a walk or to the store and walk-a-bout a bit.In the evening I do the same though I may extend the workout depending on how much energy I have.Exercise before this I found was difficult. When can I get to a Gym? When can I find time? Exercise required this sorta regiment that I needed try fit into my day or a find a way to make my day revolve around it.The Total Gym fixed all of that. Its easy, its fun, the time just flies right by.It took about 4-6 weeks before I really really started to feel my levels of energy and well… felt really a great deal better.This is the Total Gym: http://www.totalgymdirect.com/It came recommended to my by a friend who is a PT and recommends this machine to anyone who can utilize it healthy or not. Its a real game changer in life.
Thank you for your reply. You are right, everyone with MS needs to prioritize their tasks. Health and wellness is just one of them. There is an occupational therapist at my neurologist's clinic, maybe I should reach out to her.You had put up a post asking for suggestions for the blog. Would adding a new author who can give suggestions on health and wellness be a good idea?
I'm quite surprised how many medical appointments I have. I use public transport at the moment and all these appointments and travel take up quite some time. Blood tests for DMT, review appointments, continence team and GP appointments and MRI scan. I thought my life was busy before I became unwell with MS, now life seems even more busy.I'm looking for exercise ideas I can do at home. One of the affordable pedal exercisers could be option to get muscle strength in legs.
I've asked this question before how many patients on DMTs are living a healthy lifestyle? Exercise has definitely helped me. I worked long hours in front of a computer, sometimes not getting home until late into the night. As my disease progressed I changed the type of activity I did to suit my ability. Sometimes I would go to the swimming pool and the staff would say how exhausted I looked, but after my swim I would feel so much better. Had I not done this my co-morbidities would have taken hold and I wouldn't have survived. I don't agree with everything on your blog, but repeatedly your calls for pwMS to try and keep healthy are dismissed. This time I know you are right.
I would happily stop any Such behavior. I have begged and pleaded with my neurologist and physiotherapists but they refuse to help me! I have a very aggressive type of SP MS and I made the horrible mistake of going to a physiotherapy hospital. When I arrived I could walk short distances with the walker, I could stand and transfer from chair to bed without any problems . In a few months, they took that all away from me and then, to top it off, they told a 25 yr old kid with a chronic progressive disease that I couldn't come back for physio unless I improved! I would find the humor in this little " catch 22" if it wasn't my life on the linemonica
When I had my first outbreak and still at the research stage of the disease, physiotherapists said me that I never could working out again because of oxidative stress, and if I also stay with compromising sequel in the leg affected by the outbreak, and due chronic fatigue. Well they passed 02 years and I continue exercising like before the disease (1 hour and 30 minutes of gym from monday through friday, even though days that makes you want to give up) and there is a clear improvement in all aspects of my routine, my current EDSS is 0, and I see the paradigm of exercise, physical activity for those with MS changing course; before the slogan was "pwMS you can't do nothing" is now "MSers you should work out how much they can still do"…
"…how do I successfully prescribe exercise to my patients in a way that they take me seriously and adhere to the prescription ? "Do you realise how patronising that sounds ? Do you really think people don't take you seriously when you talk about the importance of exercise ?Or is it more likely that once your EDSS is 5.0 or above it becomes really hard to find somewhere that can support your needs – and you have sufficient finances to pay for the exercise, transport and carers. In your 4-5 sessions of exercise per week – how many of those would be suitable for someone with an EDSS of 5.0 or more ? Are all the places you exercise fully accessible ? If you go to a gym, are staff there trained to support people with MS ?I am not anti-exercise at all and if someone is diagnosed early and put on an effective DMT then absolutely they need to be made aware that exercise is an important facet of their treatment.For those of us with longer-standing disease or higher EDSS's, we need help to exercise that's rarely there, and certainly not often in our locality. We need lobbying and more from MS specialists / MS charities and others to improve exercise access and support for disabled people.
There are facilities out there for people with higher EDSS than 5. It takes time looking for them and if they're not there finding out who is in charge and asking for it. If it means embarrassing them into doing something so be it. If you live in the UK, speak to your local politician.
I was looking into hydrotherapy for MS and sent a few emails to NHS physiotherapy teams. I discovered by doing some web searching there are a few pools in the area, they have sessions and have hoist access in and out pool. This wasn't something the MS nurses mentioned before. It was me doing my own research on what's available in my area.
lol if you do figure out how to 'make' ms patients exercise like you 'prescribe' for them to do, please let the obesity doctors know as they've been scratching their heads for years! also let the lung specialists know – they've been wanting to stop patients from smoking for decades. on a more serious note, how do you do it? perhaps by accepting the limits of your power. you can give people information but you cannot make them do things even if it's good for them. it's not a personal failing but a recognition that people are and should be free to do things that may not be in their health interests. Bojana
In the last year I have increased my weekly exercise time and definitely feel better for it. Much of the benefit is social and psychological: if you spend a couple of hours every day at a centre where everyone you meet is actively trying to improve their health, some of that energy and spirit of optimism rubs off. Quite a few of them have medical issues – you meet people who have had heart attacks, new hips or are just frail – they're all there, doing their bit with varying degrees of success! Becoming part of that community reminds me that the 'poor little me' mindset is not relevant. 'Just get on with it' is a better way of thinking.
I was diagnosed with rrms 11 years ago. I started Tysabri 12 months ago. I've always been a walker and last year I bought myself a Fitbit so I could monitor my activity. Recently I started feeling low so decided to start the NHS couch to 5k plan. I'm now in week 4 of the plan and I feel very good and proud of myself.
A great post!