Last reply 2 months ago
Dom’s Covid Diary – Wed 29th Apr

Good morning,

Excuse my fat rant.

Mrs S works really hard but occasionally I’ll come into the living room (the new Y2 classroom and occasional interview studio) and she has left the computer and is now baking another batch of biscuits and or banana bread. They are unfailingly delicious and lo, I have now gained 3kg so far during lockdown. Am trying to get my growing gut back under control by upping the walking further and in the last 7 days I have managed 43km and, according to my Garmin watch, am using 3214 kCal a day (normal sedentary male is at about 2700 kCal a day to maintain) so I can only conclude that I am being an extra greedy pig. I think I am going to have to get v. strict on the sugar intake. I dropped 10kg in the last year doing that and the 3kg bump back is really because I am eating a lot more sugar again. Damn, I like sweet stuff ☹

I am no longer being as obsessive with the lockdown and am popping to Aldi about once a week during the quiet periods. Surgical gloves and hand sanitiser at the ready, obvs. I use Google to tell me when it is quietest as a Google search on a store automatically gives a line graph of the high/low periods. All the stores now have a bouncer on the door who limits entry and sprays sanitiser on your hands, 2m separation markings on the floor and fully shielded checkout staff. It is actually quite pleasant in there, something I never thought I’d say. As Satre said in 1944, ‘Hell is other people’.

I have submitted a Phd application last night. I wish to examine the good and the not so good examples of the way the diagnosis and communication around MS is handled in the newly diagnosed. Over the last few years, I have heard an incredible mix of experiences and methods. It is my contention that the way this initial process is handled can have a significant long-term effect in the way the person perceives, manages and progresses through the disease. It is about looking for good practice and seeing how that can be taught to medical students (Doctors and Nurses) or people entering the field of specialist MS care.

MS & Covid stuff…

Choosing your news is tough. I tire of the rehashing and recycling of the same stories, mostly because there is nothing new to say. My take is that there is not enough PPE in many places and the government in it’s cutting cutting frenzy of the last 8y or so has repeatedly kicked any serious disaster planning into the long grass as it costs money but it is really dull so, as it can’t be turned into headlines about the thrusting economic revivalism of the health service, it ought to be cut. Planning is for sissies, smoke me a kipper and I’ll be back for breakfast. That’ll show the filthy proles who are in charge etc.

Still, many of us do not have to suffer the surreal weirdness that is Ginger Hitler. I really do feel for our American cousins. I think there is a section of the Trump voters that truly believed they get something different that would shake up the system. I don’t think they bargained for such a childlike egotistical fool. I wrote an article about three weeks before he was elected saying that he would win and why I thought it so. The unexpected stuff has floored me. I saw bluff and bluster; I didn’t imagine someone who had such sloped shoulders. Thinking of you guys. At least you can do better in November, though I am not sure you will.

The really difficult stuff. I have been reading and listening to some stuff that isn’t fun but is crucial. DNR (Do Not Resuscitate) conversations. Talking about what you want to happen in the event of the worst and having it all written down and shared is crucial. There is the capacity and you must make it explicitly clear – even more so if you have advanced MS – that you want FULL medical intervention if you need it. There is a worry that an assumption may be made with very frail and/or elderly people that they would not want it. If you do AND you write it down and share it then they are obliged to treat you no worse than anyone else. It is all about control. If the Covid gets you it can be quick, and you may not get the oppo0rtunity to express clearly what you want. Make it known now to family members, carers, your GP, your lawyer, your neighbour etc. There have been reports from Wales at one point of a care home GP signing some sport of blanket DNR for residents. If true that is appalling.

You realise that you can opt-out of shielding if you think it is inappropriate? Shielding being the full-on isolation that is more severe even than the ‘standard’ lockdown. The sort of thing those who recently finished HSCT and with nearly non-existent immune systems need to do. The government shielding letters have been a bugger’s muddle with some people being missed out altogether and some people being unnecessarily worried as they received a letter but don’t need to shield. It breaks my heart to see people being so worried when they don’t need to be. The added psychological stress is simply unconscionable. The only DMTs that should cause increased concern are the sub 1y post-HSCT, recent alemtuzumab (Lemtrada) recipients and a tiny subset of Dimethyl Fumarate (Tecfidera) patients who may be getting much lower lymphocytes as a result. Broadly speaking if your lymphocytes are .8 (some say 800 but they mean the same) or higher you are likely no less safe than the average person. As one neuro in Scotland was keen to pint out, that is a guide. He said that he would be less concerned about someone stable on .6 than someone who had dipped inexplicably to .85 from higher. It is, as ever, horses for courses.

But, for there is always a but, the attention now is turning to how the different DMTs may affect, blunt, the response to the vaccine when it arrives. Anti CD20 B-cell depletion like my drug of choice, Ocrelizumab (Ocrevus) along with Ofatumumab, Rituximab and Ublituximab (some of these are pre-release but there are some people in the UK taking them as part of trials) will almost certainly blunt the response particularly to glycoprotein components of a vaccine. SP1 modulators like Fingolimod (Gilenya), Siponimod (Mayzent), Ozanimod and Ponesimod along with Mitoxantrone (Novantrone), Alemtuzumab (Lemtrada) and HSCT (Stem cell transplant)., All will blunt the vaccine response. Cladribine (Mavenclad) may blunt it and all the other old therapies will not affect it at all. The concern is that the ‘Blunting List’ is likely to contain the drugs that the people shielding, most in need of a vaccine, will need to take. These are the people likely to depend on others and though the others may be safe they can still pass on the virus whether or not they have immunity, howsoever derived. I think this will be the interesting thing going forward as the efforts to address this problem will reflect whether society has changed its attitude towards the value of life when it manifests in an extremely disabled person?

All the talk now is towards an exit strategy. I get the idea as there is not an endless pot of money to keep handing out. The economy needs to keep turning, taxes need to be paid etc. I live in the (vain I think) hope that the need for money will encourage our glorious leaders to stop straddling the fence on so many tax/support issues. For example: If you want to be a tax-exile then fine. You shouldn’t then expect the UK government to prop up the firms that are the source of your wealth. It does not cut both ways. The boss of Bet365 was getting it in the ear for her pay packet but had a lovely retort when she acknowledged it was eye-poppingly high BUT she paid all her tax in the UK, didn’t try and swerve it with clever tricks and accounting wheezes, My kind of rich person. Earns it and unblinkingly pays her tax.

Expect to see and hear more armchair expertise about why lockdown isn’t being lifted fast enough or it is too fast. With all the biggest brains at this in the epidemiologists, the mathematical modellers, and so on having top compete with the get elected and stay elected agendas of the modern political class it will be stuttering, mistakes will be made on both sides and we are going to have to find a new normal.

As my 79 year old mother keeps repeating, ‘This too will pass’. Go forth, unlock slowly and be prepared for change. Stay safe.

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2 months ago

Thanks a ever @dominics. Good luck with your PhD application. Interesting theme. I am a volunteer with the MS Society, and before the crisis, me and a co-pilot were just starting out with doing chats to pre-med students (Yr 13 with place at Uni) about our experience of diagnosis and process. Very interesting indeed, with lots of astute questions being asked.

Re the orange guy, we Zoomed my friend in Atlanta at the weekend. She talked candidly about ‘the huge backlash’ which is going largely unreported in the news, and certainly doesn’t feature here in the news. As with the riots in Paris. Still, I am ‘enjoying’ an increase in the squirm-factor in the daily government updates, as our people become increasingly unable to answer the rehearsed questions.

Re: Tecfidera. Yes, generally regarded as low-risk except for the 20% (though we don’t know who they are). My lymphocytes are borderline (.8) and I have damaged lung lining from sarcoidosis but still not in the ‘letter’ category. Yet others on Tec, with no underlyings have had letters. So yes, discrepancies prevail.

I’m lucky that I’ve managed to sustain weight through lack of carbs. But that’s tough, as never has there been more of a need for comfort food!

Qu: is your strategy working? Posting less frequently, but in greater volume! Enjoying, nonetheless, so keep ’em coming 🙂

2 months ago

@vixen – strategy – yes. I do it when I want too, not because I feel I ought to. I just cut and paste things into a running Word doc that forms the basis for this.

2 months ago

@vixen – wld be v interested to talk to you about your experiences if I get further. It is just the initial application letter at this stage. Nothing about a lit review, references, research methods etc at this stage.

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