Living with MS Edinburgh: MS

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Living with MS Edinburgh: MS: Research I always like to attend research talks at suitable – MS! – events to try and keep up to date as an interested patient. We know...

Research and Mindfulness blog of the fantastic day! #LwMS

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Is what it is

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Is what it is IT IT IT! There is no “It” in the title. Well, apart from actually making up the word “tITtle”! Not a mistake. When chatting about whatever, and #MS comes up as pretty usual when at an MS Social, that phrase is an acknowledgement of acceptance (canny phrase itself!). By saying it, we know that we do know what we/it mean/s. Good repeatability there! For myself, even by voicing it with another understanding MSer, it’s like a ‘mutual respectful recognition’ sharing. Acceptance. Here’s a tangent. I have recently started with Ocrevus as my DMD . So far (literally a couple of months as of typing) so good. It is doing it’s thing. I’m no better, and much more importantly no worse. Yes, I have had questions about my Ocrevus, due to the lowering of one’s immune system, and feeling terrible for a while. But! This time of year everybody seems to pick up a ‘bug’ or 2. Even some bloody COVID – I didn’t – phew. SAD. That’s S.A.D. “Seasonal affective disorder (SAD) is  a
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MS blog October 2023

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  MS blog October 2023 25/9/23 This week of this, bad sleep, fatigue, affecting speech - #Dysphasia - and fatigue linked problems like forgetting to do certain things, eg. Download Toon ticket properly! Tired.                                                 04/10/23 (Wednesday) Again bad sleeps, bad #fatigue. Here's the thing. More notable 'cognitive overthinking' in that I am not on the money. Yet, was fine for the #MS #Zoom on Monday night. And starting to unintentionally upset Catherine, and therefore me too.   FB post:   #Tysabri At time of writing, I am pretty bloody next-level-tired. Or feeling fatigued, in the #MS world. Those who know that; know. Yes, I AM saying that #MS #Fatigue IS different to ‘just’ being tired. Who am I to say that? Someone who has lived with the twat (#MultipleSclerosis) for maybe 26 years now. Maybe more. I don’t know. So, #Tysabri. Well I started with this amazing #DMD (disease modifying drug) over 13 years ago, and it “made me a new man”
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F1 Aerodynamics in Schools

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Being a STEM Ambassador, I keep check with what STEM enrichment activities are planned that I feel I could support with my experience. I saw an “ F1 Aerodynamics ” related request and it tickled my buds somewhat! So I vested my interest via the formal portal/method to/with STEM and this was responded to. What was the challenge? It is a global competition given as per: “ The Competition - What's It All About? You are a Formula One™ team commissioned to design, construct and race the fastest Formula One Car of the Future, powered by compressed air cylinders. ” The first of the activities was in a middle school in Whitley Bay, to simply share my experience (having been an Aerodynamicist) with the Year 8 kids taking part in the F1 challenge. I enjoyed helping them with what they were doing at that part of their challenge.  BBC! Wow. I would have loved to have had that opportunity at that age. Unbelievable! Showing my age, a bit?! (my middle school had a
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