Functional Neurological Disorder treatment programs are worth the effort!

I participated in the MoRe—Motor Reprogramming—program in Louisville, Kentucky, in 2016.

It was the single most helpful treatment I have ever had, and may ever have, for my Functional Neurological Disorder(FND).

In this post, I want to go over why this is a treatment option, how it works, and how you can find a similar program to help you manage your FND symptoms.

There are programs like this all over the country, but they often are difficult to find. They generally are offered at research-focused hospitals and are usually run by FND-focused neurologists, though they are multidisciplinary programs.

I traveled about a third of the way across the country for my treatment program, but discovered that there actually was one available to me in my home state—run by the neurologist I had just started seeing!

The original program, BeST, is still active at the Mayo Clinic in Rochester, Minnesota.

What do these programs do?

Each of these programs, though they work slightly differently, are built around helping each individual patient to better understand their FND, and to regain some degree of control over their symptoms.

While physical therapy and occupational therapy seem to be the most consistent thread running through all these programs, many of these programs also may involve speech therapists, psychologists, and some form of mindfulness or meditation training.

The goal of these programs is to help us (FND patients) regain control over our bodies and learn techniques to help us cement these new skills into our daily lives well after the programs end.

How long do these treatments last?

This varies program to program, but it seems like they tend to be either an intensive one-week program or a part-time two- to three-week program.

The MoRe program was pretty unique in that it was an intensive in-patient program—more commonly even the intensive programs are out-patient.

When I say intensive, what I mean is that there are multiple appointments each day—so for my one week in Fraizure Rehab, I was either in a session or resting between sessions all day for five weekdays.

I checked into the hospital on Sunday afternoon and checked out Saturday in the late morning.

The BeST program has a similar timetable, though patients need to stay in a nearby hotel and then spend the days in the hospital for treatment.

Other programs, like the one Dr. Schneider ran, are outpatient and less intensive—and so take a longer time.

They offer two or three physical therapy or occupational therapy sessions a day for two weeks—and may add an additional few days to a week if it seems like the patient needs it.

When the program ends, you are given exercises and practices to take home with you—but you generally aren’t expected to keep having this form of PT.

In many cases, though, after doing these programs, you are now at a point where you can educate local physical therapists or other supportive personnel so they can help you with specific weaknesses you may have that require additional support.

How these programs help

Functional Neurological Disorder is a miswiring in the brain that often is triggered by some form of trauma.

In order to manage it, we need to rebuild these damaged connections by relearning how to control our own bodies.

Research has indicated that the part of the brain that’s most damaged is the part that acknowledges control over actions.

It means that while the signal that causes the symptoms exists, we don’t know it’s been triggered, which is why our symptoms often catch us by surprise and we feel like they just occur out of nowhere.

These programs help us by showing practical steps that can aid us in regaining control more quickly when our symptoms occur, or sometimes to prevent their occurrences altogether.

One piece of it is learning relaxation techniques so that instead of being upset by our symptoms or trying to push through them, we instead learn to pause when a symptom occurs and regain control before continuing on our way.

That pause is huge and something we often instinctively avoid doing. Meditation and mindfulness practices can help make that pause easier to take—and help us calm our systems more quickly.

The other main part is working with trained professionals on controlling our particular symptoms—working with them to set off our symptoms and then regain control more quickly and efficiently.

There are also exercises we can do to help retrain individual muscle groups on the proper way to walk, stand, and move so that we again can regain a sense of control.

Some programs also have psychologists on staff (that was actually why I participated in the MoRe program in particular—since I know that psychological stresses are very significant in my case).

They can help with the mindfulness/meditation training (mine introduced me to the Calm app), help you identify your particular triggers, and suggest possible treatment protocols to discuss with your therapist at home after the program ends).

For most of us, PTs and OTs are the appropriate people, but sometimes other professionals are helpful too, like speech therapists, depending on what your particular symptoms are.

With this intense work on better understanding your triggers, regaining control when symptoms are triggered, and learning how best to manage your symptoms, I found myself emerging from the program much more confident that I could handle whatever came my way, as well as having much fewer and milder symptoms.

I limped into the treatment program but proudly strolled out.

Does insurance cover it?

One of the big challenges with being disabled is often money and finances. So, let’s talk about whether or not these programs are covered and how to investigate in your specific case.

Generally, these treatment programs are in research-focused hospitals. These hospitals almost always work with Medicare and often work with in-state Medicaid.

Be aware that many of these larger hospitals may have reciprocity agreements with neighboring states. As an example, I was hospitalized at Columbia Presbyterian in New York City despite living in New Jersey while I was on Medicaid due to a reciprocity agreement between New York and New Jersey.

It’s worth asking about, especially for a relatively unique program like this.

Private insurance is a bit more hit or miss, and I’ve heard nightmare stories from some folks with FND about their insurance refusing to cover treatment.

The good news is that you generally find this all out beforehand, so it’s well worth it to investigate these programs and see what you can track down.

You’re not likely to get a surprise bill, and there’s no harm in asking.

Some of the programs can help you argue your case with your insurance.

MoRe definitely handled that aspect for me

By preparing yourself for the possibilities and checking your insurance, you may be able to significantly improve your quality of life through one of these programs.

Also, if you are considering changing your insurance, knowing what is and isn’t accepted for the program that’s the best fit for you may help influence your decision.

What about medications?

Generally, these programs don’t touch or recommend medications—they leave that to your doctors at home.

The only category of medication that appears to directly help FND patients so far is antidepressants—and whether that’s because they do what they are designed to do, or if there are extra benefits, is unclear.

Any other medications you take are likely either to treat another condition or to help you ease your FND symptoms.

Changing medications around during this program probably isn’t a good idea, as that’s additional stress on your body, and the reprogramming is already a lot of mental/emotional work.

What are the treatment sessions like?

These will vary depending on your particular symptoms and where you are with understanding and managing your condition.

As a warning, these treatments are focused on, and most useful for, people with movement symptoms, as opposed to seizures or paralysis, or other symptoms.

In my case, I mostly was managing movement symptoms with the occasional issue with vocal volume control.

Basically, the first session with the speech therapist was her watching me call and place an order for my next meals, and us discussing when those volume control issues occurred.

In the second session, we went off to a crowded and somewhat noisy space to see if that would trigger my symptoms, and I explained my Somebody Else’s Problem concept. Because we couldn’t trigger my volume issues, there wasn’t much they could do for me.

In the meantime, I was working with a physical therapist and an occupational therapist. Our focus was twofold: one, to help me walk without becoming symptomatic, and two, to help me regain enough control and confidence to feel safe using stairs by myself again.

They taught me how to use relaxation techniques while walking so that if I became symptomatic, I could pause, take a breath, and regain control.

This was much better than my habit of walking through my symptoms, which generally meant that whatever symptoms were happening would continue.

My symptoms often threw off my gait and put me at risk of injury (through pulled muscles or other unusual wear and tear).

I started to walk more confidently—then run—and in the last couple of days of the program, I actually was trying out all sorts of different movement patterns without getting symptomatic at all!

I also discussed distraction techniques with the occupational therapist, and on the last day of our work together, I typed up a list of ways in which I could keep things going if I was struggling to control my symptoms.

This was when we confirmed that walking with friends or while talking to them on the phone could really help me exercise regularly, and discussed playing music or podcasts when I washed dishes or prepared meals.

She also worked with me on balance exercises, and we went out for walks outside for me to have more visual and audio information to process.

For the MoRe program, there also was a psychologist on staff (I highly recommend looking for a program that does) who met with me daily to discuss my history, work on recognizing triggers, and discuss meditation and other mindfulness techniques.

We also discussed me doing some exposure therapy once I got home.

She was really helpful and supportive, and I’m really grateful that she was part of the program.

I found all the staff really positive and helpful—the nurses on that floor had been taught a bit about FND, so they were at least somewhat FND-aware, and they treated me really well.

When you go in, you can set your own specific goals for the program—with a focus on one or two specific issues you want to work on or results that you’re going to strive for.

Possible side effects from the program

These programs are well worth participating in.

However, they do require a lot of commitment and focus from you.

For some people, participating in the program will require a big push, both mentally and physically, and so can increase or shift their symptoms. That doesn’t mean they shouldn’t participate, but it is something to be aware of.

If you are consistently fatigued or have very severe symptoms, be sure to discuss these concerns with the programs. It’s possible that they may have some suggestions for ways to build up your stamina prior to the start so you can get more out of it when you participate.

Also, because FND symptoms can shift over time or under stress, it’s possible that you may develop new symptoms or have old symptoms flare back up while in the program.

I know that when I attended, I had my bladder issues flare back up, and I ended up developing new sensory symptoms.

Ever since I participated in the program, I’ve had numbness in my left leg on the outside of the calf area. I also had small (roughly quarter-size) sections of my back feel tingly near the end of the program.

I want to be totally clear about this: even with the new symptoms, it was completely worth doing.

I had a huge improvement in terms of control over my movement symptoms, and the symptom shifts and increases I experienced were different but milder than my previous symptoms.

I also seem to be a relatively unusual case. For most people, improving control over their movement symptoms decrease the frequency/severity of other symptoms too.

I just want to be totally honest and let you know that there is a possibility of your symptoms shifting during treatment—just like there’s a risk of them shifting during any other life stress.

How do I get into one of these programs?

The first challenge is finding the program. They are generally not well advertised, so it’s going to take some searching. I highly recommend using FND Hope’s Find a Provider to help you get started.

Look for institutions that have multiple FND-aware practitioners and see if they have a treatment program.

The ones that I’m aware of include Stanford, Brigham and Women’s Hospital, Mass General’s FND Unit, Robert Wood Johnson’s Movement Disorders and Parkinson’s Disease Center (though with Dr. Schneider’s death, I’m unsure if the program will continue), and the BEST program at the Mayo Clinic in Rochester, Minnesota. I believe that there’s also a program in Lansing, Michigan, and at the Cleveland Clinic.

It looks like the program I participated in (MoRe in Louisville, Kentucky) is no longer available, though Dr. Lafaver created a program at Northwestern(which may also be closed now) and has now moved to New York.

As you can see, the descriptions of the programs vary, as do the expectations and the ease of finding them.

Once you find the program you’re interested in, you likely will need to go there for an evaluation.

Because FND is so often misdiagnosed, the doctors generally want to confirm your diagnosis and evaluate just how good a match you are for their program.

Also, this visit often gives the physical therapists a good baseline to work from and helps them plan your treatment.

Al drove us to Kentucky for my evaluation (it’s about an 11-and-a-half-hour drive), and we turned it into a week-long road trip.

If the place you choose isn’t nearby, you may need to do something similar. It’s worth it.

You’ll be seeing a doctor who is devoting their life specifically to functional symptoms, and these programs are the most effective treatment for FND out there.

Often, by doing their evaluation, they also can help you convince your insurance to cover your stay, so if you’re struggling there, discuss that with the people running the program.

There is likely to be a delay of weeks to months between your evaluation and your participation in your program.

In my case, I was evaluated the first week of September and ended up going in early November. My understanding is that the BEST program has had a multi-year wait at times.

Preparing for your visit

These programs are designed to really work on a very challenging condition in a relatively short amount of time.

Many of us have fatigue as a symptom or become symptomatic in response to any form of stress, including both the exercises they have you do and the excitement/hope that this treatment program brings.

When you go to your program, do your best to leave as many stresses as possible behind.

One of the reasons I was very happy to go to Louisville was because I was geographically separated from my normal life, so I literally couldn’t do most of my “standard” things and had fewer stresses.

It also didn’t hurt that they fed me and gave me a place to sleep, reducing those potential stresses even more.

The PT can be draining, which is why my program timed things out so that there are rest breaks between sessions. If you are doing an outpatient program, it’s worth considering what you can do to make your time as low stress as possible.

You’ll also want to bring things with you to help pass any waiting time you may have comfortably, like a book to read, coloring supplies, or any small hobbies you have that can be easily carried around. When I went to Louisville, I brought my coloring books and markers, as well as my Kindle so that my evenings and rest times were comfortable and relaxing.

Recognize that you are working on rewiring your brain, which takes energy and effort—so even if it doesn’t sound like a huge time commitment, you’re going to be working hard and needing quality sleep and relaxation while participating in this program.

Do what you can to reduce pressure on yourself so that you can fully devote yourself to your program.

Conclusion: While it may be a lot of work, these programs are worth it!

These programs are literally the only treatment specifically designed for people with functional symptoms. While the focus is on functional movement symptoms, it may be helpful for other FND symptoms as well—in many cases, other symptoms decreased when the movement symptoms did.

These programs are usually short and intense, though the precise length will vary by program (and sometimes based on your response).

These programs help you to rewire your brain through focused physical therapy and mindfulness techniques.

They are often covered by insurance, though it sometimes can be a bit of a fight. Many of these programs can help you with your insurance company if there are issues.

Generally, these programs do not impact your medication regimen, though if the program is successful, you may be able to reduce some of your medications in the long run.

The treatment sessions will vary based on your particular symptoms but basically revolve around triggering your symptoms and using the techniques they teach you to regain control more quickly and easily.

Since there are not a huge number of programs, getting in can be challenging—and unfortunately, these programs also are not widely advertised. It likely will take some research to find a program that could work for you, but you definitely can find them—FND Hope’s provider list can help you with that research.

Once you are accepted, there will usually be a few weeks to a few months lag time before your treatment starts, so do what you can to make your time in the program as low stress as possible.

You can do this, and there’s a good chance that participating in one of these programs will really help you better understand and manage your symptoms!