Daniel A
@meadowcopse
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Meadow, Orchard, Woodland. Conservation, Landscape History, etc. Goth & Folk music. Crohn's & diagnosed MND (ALS) 2022. Also @WurthympWood
England, United Kingdom
Joined June 2009
Rachel's Twitter / X account has been hacked and this post is out of character and She's strugglingbto get it back - I noticed I'd been sent a DM from this account today to click through to a 'vote' - which Infound suspicious (trojan)?
I'd like to extend a thank you to myself for trying out crypto trading and also to my trainer @hannahbradlleyx who guided me through the process. I've just made an investment profit of £20,000 with a trade of £800 in two hours. I very much appreciate your guidance in this.
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Self‑advocacy is framed as empowerment but for many disabled people, it’s trauma. Having to fight for every referral. Chasing services that ignore you. Repeating your story to strangers who don’t believe you. Escalating complaints just to access basic rights. Reliving harm
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Having had a fun win of a motorbike on an independent online competition website (with clear layout, visible odds and clear choice and transparency), what a horror to engage with the new @TNLUK website. Someone has sat down and launched this as an acceptable user interface?
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#GovernmentConsultation There is a govenment consultation seeking views on proposed changes to the law governing the use of powered mobility devices. Please spread the word on this consultation The consultation closes at 11:59pm on 31 March 2026. https://t.co/B8XwSgFexj
gov.uk
Seeks views on changing the rules for using powered mobility devices.
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Time works differently when you’re disabled. Not slower. Not faster. Just… non‑linear. A good day can vanish in an hour. A bad day can swallow a week. Rest isn’t optional, it’s strategy. Planning isn’t simple, it’s survival. For many of us: • Energy is a currency •
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The Mutt DRK-01 250cc reluctantly sold, nice 60 mile delivery run (sounded awesome through a tunnel). Held a week for someone who 'Yeah, will definitely have it, mate' - but got a message at midnight before day of handover with a change mind, fortunately another buyer stepped in.
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2nd train & bike combo journey in just over a week. Reluctant sale of my 250cc Mutt DRK-01 after spontaneously winning a Triumph Scrambler 400 XC oved Xmas & New Year on Apex66 Competitions. 5000 miles over 10 months on the Mutt.
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Montgomery Canal / Powys nature reserve project: https://t.co/MtOilmQTlU
countytimes.co.uk
Powys councillors approve Llanymynech nature reserve plans despite local concerns over access routes.
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Thank you Apex 66 Competitions for picking me up from Banbury railway station, when I came to collect the Triumph Scrambler 400 XC that I won over the festive season. First time entering on the site, 5x tickets @£20, and won! Absolutely genuine people and prizes.
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Petition towards permission for blood bikers to use green lights for increased visibility and awareness (2 volunteer fatalities in the last 6 months) - Sign the Petition! https://t.co/YZAOVPg0Rl via @UKChange
change.org
Grant permission for blood bikers to use green lights
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Our latest episode, "The Oxfordshire Problem", is available on Spotify, Apple thingy or YouTube (below). @PaulWhitewick
https://t.co/aSIPb4A88A
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Original EMG was 'unequivocally supports a Dx of limb onset ALS' (MND). 2 years later further EMG showed 'improvement' - which is highly unusual. 3 years 'no change on year before'. I sit in a medical & bureacratic 'no mans land' with this, with a Consultant trying to sort it.
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My own experience with a Neurologist I no longer see, was a lack of collaboration and concensus (combined with a cost based reluctance to re-test & re-diagnose). New hospital and new Neurologist - atypicality acknowledged with 15 minutes, but still ambiguous for MND after EMG...
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The medical / research paper associated with the story: https://t.co/9rowRcaTUL
jamanetwork.com
This cross-sectional study examines findings from second, independent clinical evaluations of patients initially diagnosed with an alleged “mystery” neurological illness in New Brunswick, Canada, to...
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I think anyone with a serious / complex neurological diagnosis that becomes atypical / ambiguous can relate to scenarios in this story: BBC News - The battle over Canada's mystery brain disease - BBC News https://t.co/HlZYzdcKPU
bbc.co.uk
A small Canadian province feared it had a mystery neurological illness on its hands. The search for answers set off a battle for the truth.
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Early Monday morning start in Manchester for a 9am Nerve Conduction and Electromyography study at Salford. NC not really different to early 2025 & 2024 (no significant concern), EMG still shows arm problems to review, but still fortunately mild / atypical for a 2022 MND / ALS Dx
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A couple of hours Sunday afternoon / evening in @SocialRefugeMCR cafe / bar / bookshop / space - who are now doing hot food Wednesday to Sunday until 4pm :-)
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After the convenience of a modest size bike last year and a couple of years of ongoing medical uncertainty, high stress, brick walls of bureacracy and a 3 year restricted licence, about time for some spontaneous good luck for the year ahead !
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The reason I'm selling my Mutt DRK-01 250cc? I spontaneoudly entered an online competetion over the Xmas period with Apex 66 Competitions - and won a new Triumph Scrambler 400 XC ! https://t.co/JJ8UcwFHIe
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Slightly unplanned departure / sale of my Mutt DRK-01 250cc. Will be sorry to see it go - 5000 miles of trouble free riding in half a year. Shame Mutt went bust a week after I ordered it, I'd have liked to have seen their liquid cooled range grow...
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