62yr old Father of 3 Grandpa of 5 , NSCD ParaAlpine, Athlete,Chef, Sailor, promoter of disabled skiing,Visually Impaired Ski Guide #manelystrong #nevergiveup
Denver
Joined August 2014
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nick manely retweeted
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.
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
Either did I. Living everyday to the fullest with FND. #NeverGiveUp
nick manely retweeted
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. – at Whistler, British Columbia
nick manely retweeted
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!
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/rheumatolog…
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
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
nick manely retweeted
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
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
nick manely retweeted
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.
nick manely retweeted
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
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/1hLMH…
nick manely retweeted
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
nick manely retweeted
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-exp…
Wow, this is game-changing. My eyes are spasmodic, and depth perception is going bonkers. @NjRamsay @FndPortal
MODIFI: protocol for randomised feasibility study of eye-movement desensitisation and reprocessing therapy (EMDR) for functional neurological disorder bmjopen.bmj.com/content/13/6… @Sarah_R_Cope @susannah_pick @FNDHopeUK
nick manely retweeted
🗣Dear FND Society,
Good news! The June featured webinar is now publicly available, titled:
"Setting up a Telemedicine Clinic for Patients with Functional Movement Disorder", presented by @LaFaverMD @EricaSiegPsyD & @sharimarchbanks.
Watch here now: lnkd.in/e_WvwQdG
