FES to improve muscle strength

[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?

[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that supports the clinical benefit of combining ABRT, including FES, with disease modifying therapy in MS patients (unpublished data).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]

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]

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]

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

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

[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! 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]

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.

[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.

[jjmagpin]

Fes

Suebee/GaryP,

I just started to do a little research regarding FES...GaryP....how did you find out about the site that provided the FES sessions?
Suebee....Did you mention that you actually purchased a small device for FES? Forgive me if I misread that.

[jjmagpin]

Fes

Teena Marie,

May I ask you a question?...What FES did you purchase and did you find it worked? I am doing a little research and just caught your post from last year.

Hi Suebee,

This will be quick-in a rush. I believe FES refers to all equipment such as the bike, bioness and walkaide. Terry Wahl,s used a neuromuscular electrical stimulator for muscle strengthening. Which is electrodes you apply to a muscle group that provides a contraction thereby getting the muscle to work. It's best if you are also trying to make the muscle contract yourself connecting brain messages to the muscle. I've used this in the past with modest benefits and will start again soon. I purchased it online and had my PT show me where to place the electrodes and did it at home. The device was under $200.00. I'm in Canada so not sure about insurance, etc.

Hope this is helpful. I'm happy to share my experiences anytime so fire away the questions. It has been my experience that PT's don't see it as beneficial for MS. I ignored that and kept pursuing it.

Good luck and keep us posted.

Teena Marie

[Suebee]

jjmappin,

Wahl used 300 PV Empi at first and then newer "Continumm". Find her blogs or the book Wahl's Protocal for her decription. She thinks it is important to use a FES you can turn the frequency up high enough (i.e. don't buy FES that doesn't say what frequency it goes up) and more leads to pads are better so you can get several muscle groups at once. She also felt it was important to due many hours a day to get level she needed and then maintenance. I thought it was daunting to do unaided by PT. Teena Marie is more daring and has it. She can better say how it goes independently. Good luck. I wait with baited breath over Gary's results......

[jjmagpin]

Fes

Awesome. Thanks Suebee...I appreciate it

[AMFADVENTURES]

I am also interested in this topic although I share Teena Marie's concern about not involving the primary neurons to activate the muscle in question. Having said that though, I can see how there could be some advantage to the feedback neural network when a muscle is activated directly with an electrical device. I suppose, in the end, if it helps, it helps, so interested to hear outcomes.

Larry