Positive Affiliations 5

Straight to it! #lesswaffle!

1. Tysabri 108.

Another? Thankfully YES! Those who know, know! My MS treatment, my DMT (Disease Modifying Treatment; DMD…Drug), and it has done and doing its job. Touch wood.

I like to think that the week prior to the infusion I was quite active and energetic in my own way; then the reminder. Tysabri gets commonly named ‘magic juice’ by its MS recipients.

I can’t quote stats for those of us who get Tysabri that are NOT affected by the time between infusions. Some are though. Commonly I am one that knows when it is the 4^th week of the 4. More fatigue with symptomatic responses as an example.

A top-up then. Literally! The weekend was largely spend sat on my arse doing not a lot.

The actual day after the infusion (before the weekend) I did ‘receive’ a session with an MS specialist Physical Trainer, all positive for the MS journey’s benefit. Then a welcome sit for a meditation session thereafter.

Back to the weekend’s sitting. That was when I wrote the Sunderland Airshow blog, so it wasn’t fully wasted.

It really is name-fitting, the magic juice. Let it continue!

2. Sunderland Airshow BLOG.

By now you may have read the respective blog, so I won’t repeat what was said.

Typhoon

The fact that I wrote it is a success for me. Aye, my blogging is free in that I get nothing material in return for what I do. But to know that there is some useful information spread throughout them is a reward for me.

I do not make MS stuff up. What I have are links to other websites host relevant information.

Blue highlighted underlined text – external links

Red highlighted underlined text – internal links

I have time to blog due to my condition. I do not work that pains me daily. It is not a choice I’ve made I promise; a blog itself elsewhere.

3. Fitness.

You get the idea. I continue doing what exercise I can do and benefit from it. An achievement? Without doubt!

As long as I can do what I can; I will. Knowing that exercise is now being seen more and more as such a great benefit within the MS journey – I will endeavour to do go on doing so.

4. Social Media

What? A fourth? Briefly.

Having experience with social media (work not play), I will leave this for another / its own blog, other than, for a Tweet reply to the fantastic American neurologist Aaron Boster’s tweet being liked and retweeted by him again makes me happy and proud!

#eachtotheirown!

More than 3 positives OK?

Comments

F1 Aerodynamics in Schools

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

MS blog October 2023

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”

Ocrevus

Ocrevus . Notes 1 The infusion was completed at 1pm, and I was asked to wait for 15 minutes after the cannula had been removed. I was told to take it easy for the rest of the day, that'd I'd be tired. Body not used to the new drug, nor my mind, given that I had been anxious about #Ocrevus day. Ok then, I'll accept a lazy day. Was planning a curry takeaway anyway! I am tired. A few nights of bad / poor sleep. Ocrevus. Notes 2 Second infusion (second half dose) done by 1ish. Then again asked to rest for the day. Yes, as per, I was tired. #Anxiety due to an earlier taxi booking (for 07:20), with the small alarm fear! And also a few wake-ups during the night. Usual, but! Prepared with laptop, phone (obviously), headphones, sarnie, bottle of water, and chargers in case. And a BBCi downloaded film. The same as my first unknown Ocrevus trip. Slower start than last infusion, but after the paracetamols and antihistamine, the weak steroid infusion did its thing for half an hour; wi

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