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  #11  
Old 08-08-2016, 04:43 PM
Suebee Suebee is offline
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Default 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/
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  #12  
Old 08-08-2016, 05:18 PM
Suebee Suebee is offline
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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!)
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  #13  
Old 08-11-2016, 05:30 PM
Lmh Lmh is offline
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Default 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.
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  #14  
Old 08-13-2016, 05:05 PM
Suebee Suebee is offline
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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!
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  #15  
Old 08-20-2016, 01:49 PM
garyp garyp is offline
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Default 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/
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  #16  
Old 08-20-2016, 01:52 PM
garyp garyp is offline
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Default 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?
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  #17  
Old 08-22-2016, 11:35 AM
Suebee Suebee is offline
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Default 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
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  #18  
Old 08-22-2016, 08:29 PM
garyp garyp is offline
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Default 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
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  #19  
Old 08-23-2016, 12:15 PM
Suebee Suebee is offline
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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
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  #20  
Old 08-23-2016, 03:15 PM
garyp garyp is offline
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Default 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.
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