FND365

Functional Neurological Disorder (FND) Education and Advocacy

[FND365 @fnd365]

#FND Patient Advocates: how do you handle the fight against the unaware? The demand for better treatment? The balancing of symptoms and advocacy? @FndPortal @FndLifewith @ConnectFnd @KH118118 @FNDHope there are so many more I apologize the list doesn't include everyone.

[FND365 @fnd365]

@fordnation Will your helping others be extended to ODSP recipients? $497 Shelter $672 basic needs? Average rent $1000? We have given up everything already. Lent, what a joke. #ODSP #odspoverty

[FND365 @fnd365]

Released in 2019, yet misleading recovery information continues spread in neuro offices and online. T #FND #FNDtreatment #FNDrecovery #FNDfacts https://t.co/PmMfede3cA

[Serpina, Longhauler, PhD @SerpinaLonghaul]

@DrEReinhold Nothing is more effective in creating an ongoing need for medical attention than a system in which a patient with complex multi-system chronic illness is told by impatient doctors: what is the symptom that you'd like to focus on today?

[Wesley Kerr, MD, PhD @wesleytkerr]

Our newest publication! A minority of patients with #functionalseizures have abnormalities on #neuroimaging. Essentially, hippocampal sclerosis or other similar findings are uncommon and do not rule out FS without comorbid epilepsy! @UCLANeurology @FNDSociety @FndPortal

[amanda hall @mandydr04]

Why is it im meeting so many people that feel like they are being left or abandoned by professionals after a #FND diagnosis is that patient not entitled to a care or treatment package too? To them it's like telling someone you wont help fix a broken bone. !!!

[FND365 @fnd365]

Important to my personal journey as well as in an advocate capacity. There is still so much to be accomplished to generate greater #FNDawareness that results in actual treatment for people with #FND.

[FND365 @fnd365]

#FND Patient Advocates: how do you handle the fight against the unaware? The demand for better treatment? The balancing of symptoms and advocacy? @FndPortal @FndLifewith @ConnectFnd @KH118118 @FNDHope there are so many more I apologize the list doesn't include everyone.

[FND365 @fnd365]

J- I want to thank everyone for their suggestions with the struggle I have been having in my venture in to Twitter. I took some time away to realign my goals and the goals of FND365. Advocacy of FND, for treatment and respectful care of people w/FND is important to me. 1/2

[FND365 @fnd365]

J- I was once told "They" say to get over a bad relationship it takes the length of the relationship x2. I am concluding the same for my relationship with FND symptoms.

[FND365 @fnd365]

Hoping to attend, crossing fingers starting now🤞

[Princess, The Tower @APainPrincess]

“We do not fake being sick…we fake being well. We put on our social masks and smile through our struggling to make others feel comfortable… We are desperate to be a part of the world and feel some semblance of normalcy—even for a brief respite.” https://t.co/Crr7UYHYCG #spoonie

[FND365 @fnd365]

New @FrontNeurol?! lllThose who have FND, FNDaware have known, conducted "research", & read this research over and over. 3yrs ago I found this information for a research paper, I posted it in @FNDHope FB patient support group. Negative treatment? It's abuse, neglect, trauma.

[Frontiers - Neurology @FrontNeurol]

New Research: A Service Evaluation of the Experiences of Patients With Functional Neurological Disorders Within the NHS: Previous research into Functional Neurological Disorder (FND) has shown that there are significant barriers in providing… https://t.co/sFa9iYezkT #Neurology

[FND365 @fnd365]

@ontapphysio2 Look at Treatment provided for other conditions that are not yet understood and you will likely see you are in groundbreaking territory. #FND, #ME, #Fibro

[FND365 @fnd365]

@FNDAction J - I call this the DX and Ditch treatment program. Research backs the program w/studies concluding recovery begins w/ diagnosis. I'd like to see FND studied in terms of abuse by drs. It's acknowledged w/diminished value and generalisation.

[FND365 @fnd365]

Time limited treatment, support organisations made up of people who haven't fully recovered, recovery begins with diagnosis? Logical fallacies are not treatment.

[FND Action @FNDAction]

People diagnosed with a Functional Neurological Disorder want solutions, not persistent torment. This has to start with Neurology stopping discharging people whilst they remain symptomatic or without an 'appropriate' treatment plan. Keep talking #FND to make a difference.

[FND365 @fnd365]

@elliestark14 There are many online, self led programs available. I will say that I returned as an adult and found that any group anxiety I had was lessened. At half my age the kids as a group didn't notice me much and my anxiety lessened. ***You will not regret going back if you decide to.

[FND365 @fnd365]

For those with disabilities, chronic illness, immunocompromised in higher education (student or prof) - will return to in-person classes help or hinder? What would be your ideal delivery method? #DisabilityTwitter #education #Students #disabilityinclusion #accessibility

[FND365 @fnd365]

@FndLifewith Jennifer - Neuro @ dx - Tests don't show that anything is wrong. (Crying and asking why symptoms are happening.) See? Your reaction shows you need a psychologist. Neuro walks out, nurse sneaks in with torn paper https://t.co/Otf4LHcy4G Take the time you need to collect yourself.

[FND365 @fnd365]

@denielsen Start with a question. Is going back to in person (for this course) convenient or necessary? Email > Profs decide for the courses they teach. The transitioning work has been started & initial resistance to change hurdle has been overcome. I am using Capstone approach😀