CategoryLifestyle and self-management

Which side of the fence are you on?

Barts-MS rose-tinted-odometer: zero-★s (still seeing red) Apologies some more definitions:  Side of the fence: used to refer to either of the opposing positions or interests involved in a particular situation. Status quo: the current situation; the way things are now. The MS community, i.e. patients and HCPs are content with the status quo and aren’t looking for a change.  NEDA: no...

Refusenik

Barts-MS rose-tinted-odometer: ★★ She is only 24 years of age; a graduate trainee in a marketing company. She has a promising future ahead of her. She lives in London and has a long term partner; they met at University. She knows he is the one for her and they are planning to get engaged in the next 1 to 2 years. Like most graduate trainees they find London expensive and share a house with four...

Pack your DMT tools for the long run!

Over the past year, I was privileged to counsel many people when starting an MS disease-modifying treatment (DMT), and reviewed even more pwMS whom had been on a DMT for a considerable amount of time. This has given me valuable insights in which drug-related characteristics matter in the long run, both literally and figuratively. First, there is no doubt about the fact that some drugs are more...

Snooze it or Lose it

ProfG has repeatedly said ensure your sleep health is good. I sadly am now on course for a 30% increase risk of dementia….Maybe that,s the problem ;-)..I guess time for some more snoozing and snoring and no more 2 am zooms. Sabia, S., Fayosse, A., Dumurgier, J. et al. Association of sleep duration in middle and old age with incidence of dementia. Nat Commun 12, 2289...

Guest-post from an ocrelizumaber

I uploaded a video to theMSguide.com a few days ago talking about my concerns as an ocrelizumab patient and how the potential lack of Covid vaccine response stood to impact my life. I am five full infusions into this DMT and the fact that it appears to severely impact the ability to generate a meaningful immune response after a Covid-19 jab is administered is no fault of anybody or anything. It...

Lukewarm – lifestyle & wellness

Barts-MS rose-tinted-odometer: ★★ How brain-healthy is your lifestyle? Someone asked yesterday why did I give George Jelinek’s book ‘Overcoming MS’ a positive review and yet we don’t promote it openly on the blog? Very simple our policy is not to advertise commercial products on this blog and if we promoted OMS then what about the other MS-related lifestyle and wellness programmes? I am still...

Becoming an MS outlier: the manual

MS outliers are pwMS that are different from all other people diagnosed with the disease. Being an outlier could go both ways. Some pwMS develop significant disability very short after being diagnosed while others live with the disease for decades and are still out and about. The problem is we cannot reliably predict the disability trajectory of pwMS at diagnosis. Observations in big groups of...

Social media is not media

Facebook, Twitter, Instagram, Tik Tok create an escapist persona for many of us staged by influencers, experts and self help gurus. It is the first thing that we check in the morning and the last thing we glance at before dropping off to sleep. Research has shown that we spend more time on social media sites than actually making true human connections. However, having an illness isolates you like...

Are you ready for the “dørstokkmila”?

One of the things that has struck me during this COVID-19 pandemic is how little many pwMS move. Very often I speak to young pwMS that have low levels of disability but hardly reach 2000 steps a day, which corresponds to 1.5 K or 1 mile. Similarly, also people with advanced MS told me that lockdown has been detrimental to their levels of physical fitness and report an increase in spasms and...

Is that revolver loaded?

Barts-MS rose-tinted-odometer: ★★ Are you lonely? Have you lost a loved on during COVID-19? Have you lost your job or had to reduce your income because of COVID-19? Can you make ends meet at the end of the month? Are you worried about your future? How is your relationship with your partner? Are you depressed? Anxious? Are you sleeping well? Are you drinking too much alcohol? Are you feeling...

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