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The alphabet. Aphasia.

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The alphabet. Aphasia. MS, speech, distractions, topics awry. ADHD, topics jumping here and there all the time. Confusing. Been said that people struggle to keep up with me talk. Understanding, maintaining conversation interest. #MS #ADHD. I am Roger. Live and have lived with M f***ing S for possibly 28 years, or there or there abouts. Who knows in the #MS world, diagnosed 2001. Anyway, as much as I have accepted this to the best of my ability, I will always be sad that my working life finished in 2006. Aged 28. What a c**t. Something I never envisioned and definitely did not want to happen. Yes, sh1t happens, how we deal with the sh1t shapes how we move on. I am a volunteer, the rewards of which can be fantastic. Now and again, I am brought back to reality of within my MS world. Without going too dipply-deeply into details of the neurological condition in question, it is fundamentally that the body’s own immune system attacks the body. Cheers! [OK, the white blood cells see the myeli...
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My life, my Story

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A quick blog, as I have been writing something else for a while. The context below is a copy of some of the words - all hugely draft by the way - just to keep my Blogger alive! My life, my Story so far, at 46 anyway. That is an opening line as I add to a, as I call it, something I wrote of a 'cathartic' means of downloading some mainly negative thoughts following what was an MS social activity. There. That's an introduction to my world living wit h Multiple Sclerosis. Hereafter as "MS" (M y S tory ). If it wasn't for the wonderful (I'm a sarcastic c**t (that swears) at times) neurological disease of #MS, I wouldn't have even thought that I would find myself, by choice, sitting in a Costa on one's Jack Jones (I am also very good at spouting shite!) effectively having a go at the start of a book! A book! I'm an engineer for fucks sake. Numbers not words. Well, apparently everyone has a book in them. Ahem! Blogging is one thing, writing a book is...
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PIP reflection 2024

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  PIP reflection 2024 Over the last few months, it’s safe to say (metaphorically) that my head had been somewhat up my arse; with anxiety. All due to my friend P I flipping P. Yes. Personal Independence Payment ( PIP ). Having received the renewal form LAST year (that’s 2023 as of typing), I anxiously stressed to get what legitimate proof I could get to assist my honest form answers. Big kudos to the Citizens Advice Bureau for help with said form ‘completion’. I was struggling. And without ANY surprise, I still live with MS ! Multiple Sclerosis the chronic Central Nervous System disease. Has it improved? No. Is it progressing? Yes. Is there a cure? I and about 2.3+m others wish. Anyway, part of my ‘processing’ stuff is that I keep notes. Yip, my memory is far from good. Cognition . So, here are 3 fairly recent ‘notes’ relating to PIP that I still have in my phone for a short blog and how one’s anxiety has been: No escape (1st May) Missed phone calls, a voice message. Joanne ab...
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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...
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Ocrevus

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  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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AlterG

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AlterG The what? A brand name? About? A truly, truly, amazing invention - a NASA invention - to allow a human to effectively experience movement WITHOUT GRAVITY! I kid you not. The following words should explain this a shit-load better!: Calibrated Differential Air Pressure AlterG ® Anti-Gravity Treadmill™ technology combines precision unweighting technology with real-time gait analytics and video feedback. No other unweighting technology offers as much precision, accuracy and comfort than AlterG. Better?! Obviously! The one word I missed was Treadmill! Doh! Well, I’ll stop there regarding my initial description of this superb piece of brilliance. Click on the linked text above or forthcoming pictures for more (no commission for me!). Wikipedia - AlterG After an initial ‘test’ of some of my abilities - set the control - I began a week later (on 4 subsequent Wednesdays) - and my eyes were opened! 1st Session I didn’t make notes directly after that session! Another MS meeting took those...
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