#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.
@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
Released in 2019, yet misleading recovery information continues spread in neuro offices and online. T #FND#FNDtreatment#FNDrecovery#FNDfacts https://t.co/PmMfede3cA
@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?
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
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. !!!
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.
#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.
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
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.
“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
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.
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
@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
@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.
Time limited treatment, support organisations made up of people who haven't fully recovered, recovery begins with diagnosis? Logical fallacies are not treatment.
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.
@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.
@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.
@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😀