Last reply 2 months ago
Daily Briefing Covid-19 [18th April '20]

Morning,

The more astute amongst you will have spotted that I singularly failed to honour my commitment yesterday. Apologies. It hit me when I was sat watching telly with Mrs S giving me a shoulder massage. I battled with the idea for a nanosecond but decided against writing. Sorry not sorry.

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MS & Social Stuff – no studies or Covid stuff today. I thought I’d do a bit about my experiences. My brain hurts from all the reading.
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Really, it is the weekend and sometime I enjoy not being brain deep in in MS stuff. I marvel at the damned effectiveness of the ocrelizumab I am on: this has been the longest time (mid last year) that I haven’t even had the slightest hint of tingles, buzzes, flushes (from the DMF i used to take), spasticity etc. I know I have MS, but these days it is an epidemiological concept. The ontological reality of the situation just isn’t there. I am not complaining.

I have had RRMS for 26 years now. I seem to have had a light touch and a neurologist I had for 7y (Matt Craner of Surrey, Oxford and the Royal Navy) is firmly of the view that I have done well because I have always had a really active lifestyle. Whereas I have never thought so I am apparently quite active. These days I feel like a fat lump but that is only because I like to think of what the 20y old me could do and not the knackered 51y old version.

There has been a price to the activity but I’d never change it. 76cm of surgical scars due to fixation of breaks and then in several (3) cases the removal of the metalwork and in 1 case two more ‘tidy-ups’ in the ankle. I started at 18 with a knee op because I was ski racing (moguls – freestyle) and then, over time as I moved to cycling and climbing there were the inevitable falls. Some with a slightly less bouncy landing than others. These days I take the safe option and do a lot of walking. In Jan I managed 168km for the month and now we are in lockdown I am at 30-50km weeks.

Drugs – I was tipped the wink (by a research neuro about 1200mg of alphalipoic acid in 600mg bd) obout ALA as a potential neuro repair therapy. I think the UK trial centre is in Wales.I think that it is a slim chance that it will shown to be clinically effective, but given the source of the info I am doing a rare bit of ‘a mate told me’ drug taking. It is a proven med with, to me, no side effects. I also atke 1x 400mg ibuprofen of a morning to cover the aches and pains of aging and viz the above remarks of the various breaks. I was prescribed Modafinil by a London Neuro in Charing Cross when I was battling to get through my MSc in Sheffield. That was transformative and I take 200mg every morning. It is one of those drugs where I can’t really tell if I have had it as it doesn’t accelerate me in any way, I just feel more mentally normal. I can tell on the rare occasion that I forget it as I am mentally wiped out by noon. I take a 10000iu vitamin D tab (prescribed so QA) to keep c. 5000iu in my system daily. So, after 26y they are my only regular meds. Not terribly exciting and happy that it is fewer than many have to take. Nothing like a good walk, whatever the weather πŸ˜‰

The video with Nicky Osborne, the GP, is up now and being placed amongst the messages here. One of the main messages – also emphasised by the neurologist in the MS Society webconference for patients yesterday – is that you MUST continue to engage with the medical service if you are having any issues. It seems that they have experienced a real drop off. Far greater fall in demand than there should be.The GP is an excellent first port of call and I’d encourage you to watch the video. It is only 10min long. What else were you going to do with your time? https://www.youtube.com/watch?v=SP4uak0UIE8

I have to get tarted up (shave, brush my hair and put on a shirt stuff – no panty remover) as I am interviewing Br Brandon Beaber, a US based neurologist in California. I think he is great because he has actually tried many of the MS meds (the safe to do so older ones) to experience the side-effects for himself. Kudos to him. We’ll be talking about the US and also about research efforts around Covid-19 and MS. Should be interesting. He also has a channel on YouTube though I fear he is slightly overshadowed by Aaron Boster in that respect.

Stay safe. Streeeeeeetch and do any exercise that you can.

On the “What to do in my confinement?’ issue I will be interviewing a neurophysiotherapist who specialises in MS patients next week. Ellen Armitage from The NOC in Oxford.

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vixen
2 months ago

@dominics, temporary abandonment and subsequent apology duly noted and accepted! Your bulletins have become part of The New Covid Order and things come unstuck with routine when you don’t publish, so thanks! πŸ˜…


dominics
2 months ago

@vixen – no pressure then…

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