Hey my fellow FND goer's! Since I have been dealing and dianosged with FND I have found so many great resources thank you to my Nueroligst Dr. Carine Maurer (NY) my mind has been open to understanding my own symptoms and listening to others, sharing studies from the handful of specialists who truly are here to help us all! I highly recommend if you get a chance watching her recent study and opening your mind up to hearing all the great work others have put out to find answers for us all, I truly believe these type of tools can guide us in the direction we all want to acquire and acknowledge that we are not alone. Much Love 💙💜
Hi, thanks for sharing, she is really passionate about her work and it comes across with lots of enthusiasm and positivity.
I have just spent all morning watching several of her utube videos.Its great you have a good Neurologist supporting you in your journey, sadly here in the UK letters acknowledging your visit and referrals are slow, in fact if I hadn't of hassled them for a letter following a long awaited Neuro appt, it would still be in draft.
We also had one Neuro physio appt and no OT visits. I didn't think necessary when we got offered one about a year later because the spasms and numbness had stopped. Yet I just read about FND patients should be Sensory accessed as standard and a given a treatment plan/strategies that could help their way of life.
I have signed up for their newsletter as wanted to get regular updates and a pdf of their sensory profiling (60 questions) to help my son.
Access to someone with Julie's level of expertise is indeed to be welcomed. Thank you Numma 100 for making us aware of this opportunity. Love her hat!!
Its cool isn't it. I have received the newsletter now and hopefully will get the pdf sensory questionnaire, fingers crossed. I have also highlighted our group (if she hasn't already heard of us) on a personal reply to one of the newsletters I received.
I figured I would also add a really great Physical Therapist out of NYC that is specialized in FND and Movement disorders, he is also amazing with Sensory issues. I have only had my evaluation with him person in November and since I had a few recent surgery's lately have not had my follow up. Zachary Grinn who has his own practice Rethink Physical Therapy, PLLC. I have seen dozens of PT and this is THE one! His knowledge and connection with treatment is very centered for FND patients, I hope to help us all find the connections and links between specialists and ourselves and wish everyone the best!
It a paper called "Occupational therapy consensus recommendations for functional neurological disorder" and guess what Sensory Profiling is recommend (written 2020).
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My 9 year old has fnd
How can this be FND when I have a positive Babinski reflex?
I’m done but in a good way
I KNOW I AM GOING TO GET EVERYONE ANGRY
Efforts underway... Update
