FES to improve muscle strength

[garyp]

Session II plus health insurance

Suebee:

Had my second session today - only for an hour this time, though as the settings for me already set was a lot faster to set things up.

I think I went for about 25 minutes today on the bike with everything plugged in. Will see if I feel any more tired than normal tomorrow. We did raise the resistance to a higher number today as I was having problems keeping to the expected speed - kept going over.

As I was leaving, another patient was talking with a member of the office staff. This staff member clearly had some knowledge of how insurance works etc. as she was advising the patient how the claim needs to be engineered for a Medicare person with MS needing multiple sessions.

So, elected to ask her what insight she can provide on getting private insurance to pay for FES. Her first question was - who is the insurance company and what plan? After I was not able to answer that question (was asking this question from your perspective), the next line of discussion was around which code was being submitted along with the claim - not the diagnosis code, but the actual specific treatment code.

She did mention that they have patients from out of state come to their center for FES sessions - she mentioned NY state as one of the states from where people come. When people do that, they always stay a few days and come for daily FES sessions. So, depending on where you live Suebee that would be an option to get around the issue of your not having an MD who is willing to sign off on FES for a patient who can still walk without assistance (if you are sure that your insurance would pay).

I just checked my with health insurance online - and they have paid the FES claim from last week.

[garyp]

Insurance/at home device/nutrients

Suebee:

The insurance paid for the two evaluation sessions - have not yet seen the transaction for the actual FES session so not ready yet to say that the insurance will pay for the actual CES sessions or not. My wife works for the federal government and we are in the insurance plan with the highest benefits which would maximize all of that working out. They have paid for some pretty off the wall things in the past, so am confident will get through.

Next time I go will ask for any input/advice they might have on getting insurance to pay for CES.

They have asked me to go twice per week for the next month. As I cannot always go twice per week due to work schedule, the PT also agreed that I can do one 2 hour session if needed as well.

We did briefly discuss an at home device - PT not convinced that I need anything in addition to the in office sessions but she will check on how I am doing next week and then decide.

I am already on a diet that is very close to the Wahls diet so eating very well with all the necessary nutrients. I did notice that I was a little more tired than normal yesterday (Friday, one day after the first FES session) and today - the PT did say to expect feeling more tired than normal. She also advised that I hydrate properly etc. and I probably could have done better in that regard but always cautious about too much hydration for common MS issues with bladder

"I have children at home, a career I need to restart, and a lot more life I want to live. This seems like possible hope!"

Dave (Bexfield) once said that the most important word for someone living with MS is "hope". How true that is.

Thanks to your research, it inspired me to try CES to see what it can do to help me.

[Suebee]

GARY! Thank you for the in-depth debriefing of your visit with PT! I am assuming that your insurance paid for it, that is great! As I understand it, most neuros are not on board that FES will help a MS patient who still has function left in legs. I think it is because there are no large clinical studies proving benefit to MS (but there are for stroke and other CNS issues). The fact that the FES dr is an MS specialist is awesome. I can not find any PT place in my area that will give FES for MS.
Any info about how your FES is prescribed and reasons it is paid for by insurance is welcome. Also, based on video you posted, I am interested to know if they set you up with a device at home and how often they want you to go back. I feel my strength has deteriorated enough in past 2 yrs that I need to do something drastic to turn it around. I have children at home, a career I need to restart, and a lot more life I want to live. This seems like possible hope!

Also, Gary, remember that Dr. Wahls said that all the FES makes your body crave more nutrients. Be sure to feed yourself well and take supplements that help the mitochondria, it can't hurt, at least while you are doing this.

Good luck, and once again, thanks so much for update! Suebee

[garyp]

Had my first FES yesterday!

Your timing is impeccable! Was going to send out a message on this over the weekend.

The first session is with the MD involved for general evaluation, then a second session was with the specific PT I would be working with to get into more detailed design of how to approach my sessions.

Therefore, only had 1 actual FES session so far which occurred yesterday morning.

The basic setup is that you are on something similar to a recumbent exercise bike. As it was my first session took about 20 minutes to setup in terms of location for the pads which deliver the electric impulses, determining what level of impulse to provide (which depends on your strength etc..). Those settings are then saved so will save much time for future visits. When the pads are pulsating you can definitely feel it.

Once all setup, you are then taught what speed you need to attain plus how to keep the effort between both legs the same (there is a very handy visual interface to help you do that). Then the PT presses go - the machine does apply some force to the pedals to help you get and keep them in motion. And then the pads start pulsating. You then go for 20 minutes (at least for me) - and during that time you try and keep to the designated speed and keep things in balance. The effort associated with the pedaling is actually very minimal - so if you have problems even walking, the machine provides enough energy to put and keep the peals in motion.

After your get off the bike, the pulsating pads are removed (which can be painful if you have hairy legs as they are sticky) and you get off. When I stood up things felt a little strange and a little weak - the pulsation has given your muscles quite a workout. The pads can be placed in different locations of the body depending on need - mine only on my leg muscles as that is the area I wanted to work on.

As I had booked a 2 hour session and there was still an hour to go - the pulsating pads were then attached to my glutes and I performed different exercises to work on balance etc. (I do have very mild balance problems) while the pads were pulsating.

So, that is my week #1 report Have 2 more sessions next week.

Glad to answer any more questions people might have and can certainly post another report next week.

As a quick note - my actual MS neuro is not convinced that FES will help me. The patients he typically sends to this place for FES have difficulty walking and/or are somewhat de-conditioned. As I can run and in reasonable condition, that makes him a little skeptical that it will help me. The MD who runs this location is also an MS expert - and he did note to me that FES works different for every person so offered me no guarantee of improvement. I will also exploring FES to see if can help with heat sensitivity and bowel/bladder issues.

[Suebee]

Gary - how'd the FES visit go?!?!?!

Gary, I'm dying to know, how was your FES visit? I hope it went great!

[garyp]

Will report on visit!

Suebee:

Will send a report when it happens - not scheduled until October 2. Have pretty good insurance so will see if they pay or of it is an out of pocket expense.

[Suebee]

Gary, Wow, awesome videos! The doctor explained on video easy to understand explanation of why FES works-
He says stem cells are naturally present in our spine and they migrate to injury places, and will change to type of cell needed and actually repair nerve "wiring". The problem is that if one isn't that functional or active, the nerve "wiring" doesn't activiate and the stem cells can't find what is damaged. He explained that exercise and FES contract the muscles and cause the nerve "wiring" in the brain and spinal cord to activate, allowing the stem cells to repair. He says FES can make better improvement than just exercise alone.

The doctor states what I suspected that FES is not easy to use, and one needs an experienced person to show you how to use even the computerized FES bikes. His clinic builds a program for you to use at home and then you go back several times a year for updates based on your progress.

Really cool! I sure hope his clinic is doing well. I suspect it is an expensive private pay service for "mobile" MS patients because of all the hands on interaction and machines, and he would need volume of insurance covered paralyzed patients to keep it operational. I wish it was plausible for me to visit.

Good luck, I hope it is everything we imagine! Please fill us in on how it goes!
Suebee

[garyp]

More...

So, he is not my doctor friend just yet - have been meaning to go and see him for a while, and your post as stimulated me to do so

Below is one youtube video with a patient testimonial on techniques he used and another him presenting the basic idea:

https://www.youtube.com/watch?v=2x6n-WMIwVA

https://www.youtube.com/watch?v=B_NieXT71cc

[Suebee]

FES may upregulate like DMDs!

Thanks Gary! I believe in the power of crowd sourcing, and sharing my research to benefit all was my intention! (So I appreciate your shout out. ) In my professional life I was a spritely researcher, and old habits die hard. My hope is that meta analysis of MS patients and documented anecdotal evidence of FES will push such treatment into mainstream. (I'm still unclear why there is so much resistance.)

Here is nice nutshell hypothesis of why FES helps MS patients from the article you linked above:

"There is anecdotal evidence from our Center that supports the clinical benefit of combining ABRT, including FES, with disease modifying therapy in MS patients (unpublished data). This theory is supported by recent evidence that newer disease modifying therapies such as laquinimod may up-regulate serum brain-derived neurotrophic factor (BDNF) levels.34 Interferon-beta and glatiramer acetate therapy have also been shown to up-regulate BDNF.35,36 BDNF plays a critical role in exercise-induced cell proliferation. On the other hand, exercise has been associated with an increase in BDNF and its downstream effectors on synaptic transmission in the brain and spinal cord.37,38 Therefore, the combination of intense exercise with disease modifying therapies might hold promise for future research."

Yay! Your Doctor friend actually goes out on a limb and says it may up-regulate [T cells(?)] just like DMDs. Ha! That's courageous and just the kind of advocate we MS patients need.
Thanks for the links. Suebee

[garyp]

Dave Bexfield - you have tried FES?

Just responded to Suebees post - and was thinking about who else may have tried such a technique.

Your name came to mind

Ever tried FES?

[garyp]

Further medical backup for FES being a good technique...

Suebee:

Reading this series of posts for the first time. Just fabulous research resulting from very determined looking in search of answers. This helps all of us, so thankyou for sharing.

Have not tried FES. But they way you describe it - is very appealing, even for applications such as assisting with bowel movement type issues which is very interesting. I cannot answer any question to the degree you already have - but can add additional indirect backup to FES being viable.

There is an MD in the Baltimore area - who specializes in spinal cord injury and as part of his practice works with MS patients to help rehabilitate them.

He is one of the authors on the retrospective study on MS patients at Hopkins you located:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4293536/

In his own practice, they utilize FES - this helps lend further medical backup to the usage of this technique. Here is a link to his pratice offering this service >> http://inirehab.com/services/

Here is a link to this doctor's background: http://inirehab.com/our-team/

[Suebee]

A quick reply to answer question- I haven't bought a FES, yet. I can't afford the cost to "experiment" with various machines and I'm afraid to commit to the time if I'm not fully versed, or versed to my satisfaction on this technique.
Like you, I determined that I can't afford a cycle fes combo so I naively figured a few days would amass the most important research on using the FES devices. I was wrong!

Dr. Wahls found it important to have a device which could raise the electrical pulse to get a significant muscle contraction. She did both passive, and active on a bike. Timing the contraction with the bike movement seems like it will take patience, practice, and a machine that will allow you to alter the pulses to match your movement. Dr. Wahls had a PT friend help her. She said she researched Soviet/Russian techniques for athletes, and that is where I found there is a lot of info. I think the current athletic FES devices use a lot of Russian research background. There are photos and diagrams by elite athletes and trainers on the web showing placement for different muscle groups, amt of htz and duration of stimulation. This made me realize it is actually quite involved to get the correct muscle stimulation and one needs at a minimum an understanding of the type of muscle one wants to stimulate, and the strength and duration of the "zap" needed to improve muscle strength. To add to this complexity, different strength "zaps" and placement can be used for reducing spacticity, or muscle recovery. (Gosh, I would be happy just to reduce spaciticity, but I couldn't get a handle on all the instructions different users give. and it wasn't for MS spacticity)

All this made me relook at Fes devices combined with machines. They appear to take the guess work out and have "routines" one can choose to get strength, recover, or reduce spaciticity. I even pondered the remote possibility of getting a loan. But if you read the small print, the bike fes Devices require a technician to help set up and introduce it - and the home versions are really intended for paralyzed patients. So I'm unclear if these home versions would give enough zap to help someone with MS just trying to keep walking.
This made me look into body wear with incorporated FES.
The patent Dr. Wahls has is of a body suit which has appropriately placed FES pads. This isn't on the market yet, as far as i know. Although there are some European Gyms which have a FES workout that uses a bodysuit that looks a lot like it!
But, I've been giving a few looks at the ab belts. You know the ones that are on late night tv info commercial and make you snicker. Well, the FDA approved one as a real ab muscle strengthener, and unaffiliated doctors put it in a clinical trial and agreed it strengthened the ab muscles. But here is the most interesting thing in my mind - the placement of the pads in the ab belt and the ones in the MS study on ab stimulation for colon health --- are exactly the same. The only thing stopping me from buying the ab belt (besides my husband and friends laughing at me) is that is about the cost of a FES device, and it doesn't say what power the zaping goes up to. But I say let's all stay tuned, I think it is only a matter of time before ab belt starts advertising it helps colon health. ...
I guess that wasn't short. I hope that is helpful. Anyone that has had success doing FES or has insight on how to do it without taking out a home equity loan, please chime in!

[Lmh]

Fes

Suebee,
I was reading some of your old posts about FES and was wondering what you ended up doing? I also have been very interested in this type of therapy and was able to try out an FES cycle from Restorative Therapies.

Unfortunately, the price tag is 20k. Ive read many of the same studies that you have and believe there is a benefit. Unfortunately, the high price means insurance will not cover the cost and many PT 's don't have access either.
I'm just trying to do everything in my power to keep my muscles strong as this disease is starting to take its toll.

[Suebee]

This retrospective study of Johns Hopkins MS patients which examined the effect of functional electrical stimulation (FES) cycling on disability progression in persons with multiple sclerosis (MS) and I think makes the strongest finding so far .."The use of FES may play an integral part in neurological restoration of function possibly secondary to Neurogeneration ".
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4293536/

(Dr Terry Whals must be laughing!)

[Suebee]

Recent trial using Electric functional muscle stim to arm of MS patients

Here is another recent study ...it shows statistical improvement in progressive ms patients arm strength, improved tracking, and no muscle fatigue after 18 one hr sessions over 10 weeks! It combined a robotic system to ensure correct movement and max voluntary effort.( Maybe companies will be willing to do clinical trials of such devices if they can patent the robotic. )
Link to article http://www.ncbi.nlm.nih.gov/m/pubmed/25823038/