Hello. My FND takes the form of a significant gait and balance disorder that suddenly appeared in May 2020. My gait is shuffling, erratic, slow, and sometimes festinating. My fall risk is high. My neurologist has assigned me to 6 sessions with physical therapists who are specially trained in the treatment of FND.
It is difficult to believe that my severe gait/balance disorder can be successfully treated in only 6 outpatient sessions. Most of the U.K. residents who have shared their story online had inpatient treatment lasting 9-14 weeks. (Here in the U.S. all of the intensive FND programs are outpatient and only last a week.)
I would appreciate input as to how much--or how little--I can expect to be helped by the 6 PT sessions I described.
Thanks!
Written by
sgaetna2013
To view profiles and participate in discussions please or .
My gait, walking, and balance were horrific. Crashing, falling, and tipping into things was a big problem.
I am in the US. - near a big city.
Having six sessions and expecting significant results is ludicrous. Rewiring the brain is a slow and arduous process.
Once I was diagnosed with FND, the neurologist (who is a movement specialist) prescribed intense and aggressive PT and OT on an outpatient basis. He was specific that the PT and OT therapists follow his prescribed plans for treatment. After 3.5 months of twice a week PT for 1.5 hours each session, I am doing much better. Since the beginning, I have had daily homework and exercises so in that respect, it’s every day! I am now in the maintenance phase of PT. Three times per week for 1.5 hrs each time.
I hope you can get the therapies you need! FND is hard enough on its own. Fighting with the medical systems adds insult to injury!
Thanks so much for your advice. Would you be willing to tell me the name and location of the medical facility where you received your treatment? So far I have only been able to identify U.S. medical institutions which offer 5-day treatment at most. I would be most appreciative.
JOHNS HOPKINS Hospital in Baltimore MD. It is located in the middle of Baltimore City. If coming from the north or south, I-95 goes right through Baltimore. If coming from the west, I-70 is also close by. BWI airport is about 1/2 hour away. These major interstates and nearby major airport make travel fairly direct and easy. Bonus: the hospital has several parking lots. Expensive but convenient.
How can you do 1.5 hrs of physio twice a week? I have physio once a week for 1 hr and I get so fatigued it takes me a day to get over it. What sort of exercises do you do? I have balance issues and my gait is unsteady but I walk with a wheel walker. My main issue is the tone in my calves and feet, it hinders me alot.
It is what happens when something is not right in my body. Could be my bladder is full, I have nausea, pain, any number of things.
Anyway I have started rambling lol. Was just curious about how you can do so much physio and not have repricutions.?
My PT was exhausting. On PT days, I did nothing else. I alternated between naps, and sitting in a recliner listening to audiobooks the rest of the day. Often bedtime was 6:30 or 7:00pm. I sleep about 9-10 hours at night plus 1-2 naps.
My PT was divided into sections with a little rest in between.
About 30-45 minutes in total was directly with a therapist. That time is broken into two mini-sessions. Much of the PT with the therapist consists of balance and gait work.
The other half was broken into sections with exercises that I do on my own. I work on my upper body, core, and lower body alternately to manage fatigue of parts of the body. A lot of emphasis was on my hips - strengthening and range of motion.
All walking & balancing exercises are done while wearing a gait belt and directly with the therapist. Often the therapist is holding the belt from behind or standing directly in front of me, spotting.
Typical workout:
ON MY OWN:
- arm bike
- light leg extensions and flexions
- bending side to side and gentle twisting while seated on low table
- rest a couple minutes
THEN DIRECTLY WITH THERAPIST:
- balance exercises such as standing as straight as possible and with should width feet. Moving hips in a swaying motion left and right, lifting one foot/leg up and down slowly then the other There’s more. All done with as smooth and controlled movement as possible
- rest a few minutes
ON MY OWN:
- a lot of hip strengthening exercises
on my own in either sitting or lying down positions.
- then more arm exercises
DIRECTLY WITH THERAPIST:
- work on walking. I watch myself walk looking at a huge mirror across the room for some walking. Practice on ramps, steps, flat hard surface, fake grass surface, and plush carpet surface.
- rest again
ON MY OWN:
- finish a round with more core and arm exercises
- All movements are done with abdominal muscles engaged and back/shoulders straight
Often I lie down during rest periods. I have fallen asleep then on occasion. The techs just wake me up after a few minutes. The techs closely monitor me for form and help me count reps and sets - because I forget. Or remind me to do something because I forget stuff.
I have graduated to a maintenance level program now. I go 4 times a week for 1.5 hours each. I do everything on my own. Techs will spot me for some things. Therapist is always available (might have to wait a few minutes) to answer questions and offer suggestions.
It’s wonderful! It’s a test in determination to do the workout. Sometimes I want to stay home but I always go. Even when I feel rotten, I go and do my best. A few times I could do just a partial workout. My neurologist prescribed EXTENSIVE and AGGRESSIVE PT. I consider it, along with OT and speech, my full time job.
Hi Henrietta, I apologize if I've asked you this before, but I'd like to know at what institution you did the work you describe in your lengthy post.Thanks!
Sorry, Henrietta, you'd already given me the name of Johns Hopkins. Would you also supply the name of the contact person there for the FMD program? I am in the middle of the six-week program about which I originally posted, and, as you predicted, I am accomplishing nothing. I have to find a program that is much longer than six sessions! Where did you live during your time in Baltimore? Thanks again.
Just google Johns Hopkins Neurology Movement Disorders. It should take you to the right listings.
Dr Mills is the head doctor of the Movement Disorders portion of Neurology. Check out each doctor’s profiles for education, experience, and patient surveys. Some doctors list Movement Disorders as a specialty.
I don’t know where you are coming from to seek out Hopkins. I am very fortunate to live within driving distance to Baltimore. Therefore, I didn’t have to look for hotels or other accommodations.
Hopkins has local, National, and international phone numbers. Warning: they are not easy to get ahold of. A referral and letter from my general neurologist was required. It took me most of a morning to get through the hoops (and time on hold on the phone) to get the appointment on the books. That information was reviewed by Dr Mills (the head doc of movement disorders). He determines whether or not a person will be admitted into their program.
Once I was accepted into the clinic, getting an appointment can take months. By the grace of God there was a cancellation that afforded me an appointment within two months of requesting one. Usually, it can take much longer than that.
Coincidently, I am getting ready to leave for my appointment later today. I will attempt to ask for a streamlined way for you to further investigate Hopkins’ Movement Disorders department.
I will reply to you with any information I can get.
Now that I have completed four of the six sessions, I realize you were absolutely right when you stated, "Having six sessions and expecting significant results is ludicrous."
I live in Chicago, and the world-famous Shirley Ryan Ability Lab (formerly Rehabilitation Institute of Chicago) does offer a 5-day intensive outpatient FMD program. I hesitate to try to get into this program because 50% of the program is OT, which I don't think I need, and the program has a 10-month waiting list.
Mayo Clinic has a similar program, but it also offers a 50% OT component. There doesn't seem to be a program similar to the one at Johns Hopkins.
Hi luv i had physio in the hostipal about 1 session every 5 day for 5 wks and to me it was useless cause I'm relapsing too quick and I can't find my balance myself, but in my good days im great I can walk with a crutch but on the days we're I lose the power off my legs whitch is roughly bout 3-4 days I'm in a wheelchair to get about my house. Nii I'm home bout 11 wka from hostipal I haven't seen a physio therapist once, so to me try it and see but yeah I'm in Ireland and there very scarce with the out patient treatment and for me too go private it would be a waste off money and time cause it didn't help the last time x
Hi, this is something I can tell you about but you must remember everyone is affected differently. I had 9 sessions one to one with the same highly specialised physio, over one week at Prof. Mark Edwards clinic in London in May 2019. I went in very doubtful, on day one after 30 seconds my tremor pattern started leading to possible fall if did'nt sit down. On day five I was able to stay on my feet for twenty minutes without falling. I came home with ways to slow the tremors down to give me time to find a seat before falling. If you get a physio you can put your trust in and believe what they say even if it sounds silly, I bet you will make some progress. I still find it like concentrating hard and very tiring but at least I have a bit of control over it now. Good luck!
I’m in the US. I went to an intensive outpatient program at Re+Active. I lived at a hotel in LA for 6 weeks get this help. It was totally worth it. It’s no easy task. I work at it everyday and am continuing to recover.
Thanks for your information about Re+Active. Were you receiving treatment for Functional Movement Disorder? Would you be able to give me the name and contact information for the person at Re+Active who knows the most about their treatment program for FND/FMD? I really appreciate your help!
I'd be happy to! Yes, I was in treatment for FMD. I was in a 4 wk program and stayed 6 weeks as I developed an unrelated med problem. I missed too many appointments. They tailer the program to your needs specifically. Dr. Julie Hershberg is the founder. She has some great YouTubes.I highly recommend them.
Let me know how things go. I went to the Torrance office.
I just thought I’d mention that although we are all so different with how FND affects us - I found my 5 FND Neuro physio sessions really were useful. They are unlikely going to fix you.. but hopefully start you on a path of improvement.
I developed functional movement disorder in 2014. I had drop foot on my left foot that resolved after a few months, but seemed to leave me with a left leg limp and muscle spasms Extreme fatgue and immobility.
A year later, I had a week one on one sessions over 5 days with a wonderful FND Neuro physio under Prof Mark Edwards in London.
I didn’t experience any falls, but at this point I was struggling to walk, even with my stick and my life was changed immeasurably at 46.
I left on day 5 and walked further without my stick than before. He used so many different things with me. The treadmill was scary at first, but I was overjoyed when, alongside his techniques and advice I did manage it. I still use it at the gym for a few minutes, just to remind my brain how natural / normal walking is. As my walk / gait on the ground can be so different.
I learnt new ways and techniques, that I still use every day to help me to try to live the best life I can, with my mobility limitations.
The theory I found fascinating, as no one had explained to me, what’s happening with my body and why.
I had a few more sessions last October( 4 years later) to help me when I get stuck, I kinda forget how to start walking/moving…., after sitting for a while…. And other things that were affecting me.
I am now working full time ( not at home as that’s all I could manage before) and can enjoy so many more things now.
I still use a stroller/ wheelchair to visit gardens or when on a long day out. But otherwise I’ve improved so much over the past 7 years.
It’s still a battle some days and I spend lots of time focusing on my own programme- physio in the pool etc and ‘pacing’…..amending plans so I can manage them.
If there is no longer programme available, personally I would grab what’s being offered with both hands as long as its with an ‘FND Neuro physio/ specialist’ .
Then maybe a longer programme will be available at a later time.
I wish you well and really hope you find the best treatment to help you, as we all know just how scarce any treatment unfortunately is
My movement disorder (FND) neurologist is sending me to a neuropsychologist. He has a very specific one in mind who has expertise with FND. When I called that doctor’s office, I was told that my insurance wasn’t accepted. When I asked the assistant if she could recommend someone else, I was shocked. There is another neuropsychologist with a similar level of expertise in Michigan!! No one else for hundreds and hundreds of miles! I am much, much closer to Johns Hopkins Hospital than Michigan.
The assistant recommended that I ask my insurance company for a coverage exception since the specific work and my needs are not available elsewhere (within reason).
If I do get permission from the insurance company to see this neuropsychologist, and there is something new to tell you, I will post it.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
covid 19 and Funcational Gait Disorder 
Muscle spasticity and FND
FND with muscle wasting
why are dr’s so quick to say you have fnd
FND diagnosis and not coping well with it
