CategoryLifestyle and self-management

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...

Prof G guilty as accused!

Barts-MS rose-tinted-odometer: ★★ Guilty as accused!  I did a very one-sided post this weekend on the pros of oral cladribine as a treatment for MS during the COVID-19 pandemic. One commentator asked ‘what about the cons?’. As with all immunosuppressive therapies, there is a risk of secondary malignancies. In fact, both the EMA and FDA labels mention secondary malignancies as a complication...

MS and the Inverse Care Law at 50

Barts-MS rose-tinted-odometer: ★ Variation in access to good medical care and better outcomes has never been higher in high-income countries such as the UK. Variation is simply a euphemism for inequality. The MS community in the UK realised this a few years ago, which prompted us to launch our ‘Raising the Bar’ initiative to address inequality in access to healthcare for people with MS living in...

The New England Diet for MS Reduction

MD doesn’t do diets….No it is not that MD doesn’t do diets, it is that ProfG is your Diet Man….I don’t have the interest to research diets and to make suggestions. However, you have been saying I’m fed up with the COVID stuff why not do MS stuff. So is today’s fluffy post is about lifestyle, we can have a look at the mediterranean diet. But I think we...

#MSCOVID19: alcohol

Barts-MS rose-tinted-odometer: ★ She recently turned 32 and has had multiple sclerosis for just shy of 4 years. She previously described herself as a moderate drinker having 2 to 3 glasses of wine per day in the week and maybe a bottle of wine per day on weekends. She would have typically her first drink of the day in the early evening when she got home from work. However, with COVID-19 and being...

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