nick manely retweetledi
These people talk big and can’t handle even the mildest pushback or fact-checking. God forbid someone with FND actually have something to say.
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nick manely
3.4K posts
nick manely
@nbmanely
62yr old Father of 3 Grandpa of 5 , NSCD ParaAlpine, Athlete,Chef, Sailor, promoter of disabled skiing,Visually Impaired Ski Guide #manelystrong #nevergiveup
Denver Katılım Ağustos 2014
1.2K Takip Edilen489 Takipçiler
I was in my 1st Sr Golf championship at Lake Arbor G.C. finished 4th gross and tied 6th gross scores. It's hard work to conquer and live with FND. So ...go get em. @fndfriends @FndPortal @MallamElizabeth @NjRamsay @NSCD @TomPlender @jonstoneneuro
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Either did I. Living everyday to the fullest with FND. #NeverGiveUp
FND Portal - is no longer on X@FndPortal
Shout-out to the neurologist who told me in 2017 that I’d never get a diagnosis and should go home and make peace with the fact that I’d never work again I didn’t do that tho 😈
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nick manely retweetledi
If I’m honest, making films and telling stories can often feel trivial & pointless, but every now and then you get a message that knocks you to the floor. Today is one of those days. Never discount the power of inspiration.
Whistler, British Columbia 🇨🇦 English
nick manely retweetledi
Superb work (& thread!) from @chriswincup on work with @tompollak @michael_zandi @guy_lesch & others on neuropsych features of autoimmune rheum conditions
VERY common
VERY disabling/important
BUT
UNDER recognised
UNDER treated
UNDER researched
Time for this to change!
Chris Wincup@chriswincup
Really pleased to share our recent publication in @RheumJnl When I first saw our findings I was totally shocked by the higher than anticipated prevalence of neurological and mental health symptoms reported by patients with rheumatological diagnoses academic.oup.com/rheumatology/a…
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It's a long long road and daily routines to try and achieve automaticity to retrain your brain with your body. Baby steps will achieve giant steps and way of life that is more rewarding then before the FND. @FndPortal @TomPlender @FNDcourage @MallamElizabeth @fndfriends @NSCD
Tom Plender@TomPlender
Back in 2012 I was fortunate enough to have @GNielsen_Physio as my physiotherapist - one of the pioneers in #FND rehab, great talk and a must watch for FND patients
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Thank you so much my friend. You are invited anytime to my house!
FND Portal - is no longer on X@FndPortal
@nbmanely @volklskis @LeFeetLab @NSCD @DalbelloSkiBoot @LEKIUSA @sara_freeman1 @fndfriends @StanfordFND @FNDHope @TeamUSA @32Ryno @bkskiman @USParalympics This is AMAZING. Super congrats Nick! your story is incredible.
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nick manely retweetledi
Furthermore, #FND is NOT an overall diagnosis. This disorder may co-exist with other health issues. It is also NOT an anxiety disorder. Triggers are relevant but should NOT be defined as a cause. #FNDTwitter
KimH@KH118118
Functional Neurological Disorder is/must be a ‘rule-in’ diagnosis. No-one should accept the diagnosis if this doesn’t happen. #FND or ‘functional symptoms’ should NOT be a default for medically unexplained as misdiagnosing could lead to delayed treatment or harm #FNDTwitter
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nick manely retweetledi
Most of the doctors who mock FND know less about it medically than the average person with FND who has no medical training.
That’s even leaving aside the question of lived experience.
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nick manely retweetledi
@nbmanely @volklskis @LeFeetLab @NSCD @DalbelloSkiBoot @LEKIUSA @FndPortal @fndfriends @StanfordFND @FNDHope @TeamUSA @32Ryno @bkskiman @USParalympics Yes!!!! So awesome!!!! Nick you continue to be an inspiration!!!
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nick manely retweetledi
@nbmanely @volklskis @LeFeetLab @NSCD @DalbelloSkiBoot @LEKIUSA @sara_freeman1 @fndfriends @StanfordFND @FNDHope @TeamUSA @32Ryno @bkskiman @USParalympics This is AMAZING. Super congrats Nick! your story is incredible.
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It's a game-changing device and strengthening device.
skimojo@theskimojo
"Amazing device. I couldn't ski without it." Thanks Nick!
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nick manely retweetledi
Great historical perspective essay on FND.
I love how @jonstoneneuro takes traditional tropes docs apply to people w FND - “la belle indifference,” “escape” - and found them in the medical observers.
Here’s to better diagnosis, treatment, and social inclusion of people w FND
Jon Stone@jonstoneneuro
FND: past, present and future. My new editorial for a special FND issue of “L’Encéphale” co-ordinated by @guilhemcarle , Stéphane Mouchaba, @beagarcin1 and @CoralineHingray representing @fndfrance. Open access for 50 days at this link - authors.elsevier.com/a/1hLMH37Nin6LC
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nick manely retweetledi
In #FND scans, limbic & salience brain networks appear to be hyper connected to the motor cortex, suggesting emotion processing areas of the brain maybe hijacking motor control areas.
In addition hypoactivation of TPJ may explain loss of sense of agency in voluntary movement
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nick manely retweetledi
Some wonderful news: “Cadenza for Fractured Consciousness”
(my deep-dive essay on FND) has been translated into French!
Thank you to the folks at @FND_Together for all the hard work and care that you put into making this a reality. What a gift! ❤️
fndtogether.com/fr/lived-exper…
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