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  • #46
    LMH,
    Oh my gosh LMH, that is awesome! I begged three different PTs to help me to use a FES unit and no dice. I think liability reasons prevents and because there are little empirical evidence.
    Dr. Wahls got a PT to help her and she adivises patients to get direction for PTs. So I guess it is hit or miss.

    My core weakness is being particularly problematic rt now. I have gone back to work and I'm getting back and ab spasms (where ab six pack should be but isn't. I've tried tilting desk chair back. That is good to rest core, but one can't do much in reclined position, other than look like you are taking a break.

    So, I was thinking about buying the ab belt that was the article I linked long ago and was evaluated by non involved drs and found to strengthen abs. the price for an experiment, though has stopped me from the purchase so far. I'll keep you posted....

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    • #47
      Here's a study on FES that just got published. - D

      Effects of Functional Electrical Stimulation Cycling on the Physiological Functions, Walking Performance, and Body Composition of Persons with Severe Multiple Sclerosis
      Irisa Myint, Illinois Mathematics and Science Academy
      Session Number
      Session 3C: 3rd Presentation
      Advisor(s)
      Lara Pilutti, University of Illinois at Urbana-Champaign
      Abstract

      Advanced MS patients experience severe ambulatory impairments and require specialized exercise equipment. One option is functional electrical stimulation (FES) cycling, which electrically stimulates leg muscles to elicit movement on the leg-ergometer.

      Methods/Design: The randomized controlled trial recruited 11 people with severe MS (EDSS 6.0-6.5). Participants were randomized into either the FES cycling condition or the passive cycling condition in which electrical stimulation was not delivered, but the leg ergometer were controlled by a motor. The intervention was delivered 3 times/week for 12 weeks. Participants’ walking speed, endurance, and agility were assessed through mobility tests, and body composition was measured using dual-energy X-ray absorptiometry (DXA).

      Results: Body composition remained stable over the 3-month period. The passive cycling group had a moderate increase in time taken to walk 25 feet and a moderate decrease in distance travelled during a 2-minute walk test. The passive cycling group had a moderate to large decrease in oxygen used during exercise (VO2), time to exhaustion, and work rate. The only significant difference for the FES group was a large increase in peak flexor strength. Small changes between baseline and final testing may be attributed to the small sample size (n=11) and short training period.
      Dave Bexfield
      ActiveMSers

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      • #48
        FES vs AFO

        The clinical- and cost-effectiveness of functional electrical stimulation and ankle-foot orthoses for foot drop in Multiple Sclerosis: a multicentre randomized trial

        Linda (Miller) Renfrew, Lorna Paul, Angus McFadyen, ...
        First Published April 11, 2019 Research Article
        https://doi.org/10.1177/0269215519842254

        Abstract

        Objective:
        To compare the clinical- and cost-effectiveness of ankle-foot orthoses (AFOs) and functional electrical stimulation (FES) over 12 months in people with Multiple Sclerosis with foot drop.

        Design:
        Multicentre, powered, non-blinded, randomized trial.

        Setting:
        Seven Multiple Sclerosis outpatient centres across Scotland.

        Subjects:
        Eighty-five treatment-naïve people with Multiple Sclerosis with persistent (>three months) foot drop.

        Interventions:
        Participants randomized to receive a custom-made, AFO (n = 43) or FES device (n = 42).

        Outcome measures:
        Assessed at 0, 3, 6 and 12 months; 5-minute self-selected walk test (primary), Timed 25 Foot Walk, oxygen cost of walking, Multiple Sclerosis Impact Scale-29, Multiple Sclerosis Walking Scale-12, Modified Fatigue Impact Scale, Euroqol five-dimension five-level questionnaire, Activities-specific Balance and Confidence Scale, Psychological Impact of Assistive Devices Score, and equipment and National Health Service staff time costs of interventions.

        Results:
        Groups were similar for age (AFO, 51.4 (11.2); FES, 50.4(10.4) years) and baseline walking speed (AFO, 0.62 (0.21); FES 0.73 (0.27) m/s). In all, 38% dropped out by 12 months (AFO, n = 21; FES, n = 11). Both groups walked faster at 12 months with device (P < 0.001; AFO, 0.73 (0.24); FES, 0.79 (0.24) m/s) but no difference between groups. Significantly higher Psychological Impact of Assistive Devices Scores were found for FES for Competence (P = 0.016; AFO, 0.85(1.05); FES, 1.53(1.05)), Adaptability (P = 0.001; AFO, 0.38(0.97); FES 1.53 (0.98)) and Self-Esteem (P = 0.006; AFO, 0.45 (0.67); FES 1 (0.68)). Effects were comparable for other measures. FES may offer value for money alternative to usual care.

        Conclusion:
        AFOs and FES have comparable effects on walking performance and patient-reported outcomes; however, high drop-outs introduces uncertainty.
        Dave Bexfield
        ActiveMSers

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        • #49
          Dave great article! I'm glad scientists are studying this but I'm unsure why it isn't already part of mainstream protocol for MS patients. Stroke and accident victims get PT with it. Different Devices are currently available but being marketed to healthy (and wealthy) individuals mostly.

          I reread my prior posts above and my views for it are the same but now years later sadly my hope and core strength are less. I have a lesion on my spine and Stimulating my core muscles from a device would be a huge help to me and improve my quality of life but any benefit could only be mantained with continued use of device and diligence.

          Here is what I've been following---One can get full body FES work out in houston for 15 min for $70. But 2x a week in suggested. You wear a body suit with electrodes, not unlike the one dr whals patented, and an instructor tells you what exercises to do as they zap your muscles. Oh yeah. I think they douse you with water to improve conducticy, I'm guessing you need some trust here.
          Link
          Https://www.houstoniamag.com/article...itness-workout

          The other device I followed was more designed for injuried athletes but the company has pivoted toward disabled or weak individuals. Neufit. one can buy it for $9k ??machine, and there is some info they might let you rent it somehow. Dr whals currently endorses it because they sponsored one of her conferences
          https://terrywahls.com/learn-more-ab...l-stimulation/

          The third thing that caught my eye was a comestic device used by kim Kardashian of all people! It is a fat sculpting device that simultaneously uses electric stimulation to build abdominal muscles. What was is so interesting about this device (other than melting fat ha ha) is that it is specifically designed to hit your 6 pack muscles and strengthen them. It is called emsculpt. It is cleared by Fda, and only requires four 30 minute sessions over 2 weeks to build significant adominal muscles. Cost is around $4k. ( And if your butt is flabby the ads say you can lift it up too as a bonus area.! ) Wow now why can't they use any of this technology in the neurology department rehab for mser???
          https://www.health.com/weight-loss/emsculpt

          Anyone out there used any of these devices to strengthen? Any other devices you've seen?

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          • #50
            Hey all, I got renewed focus on current FES studies after Dave’s post. I found an article that is information dense, which was published last year. https://doi.org/10.1177%2F1545968317753681

            It has pictures of pad placement on the leg muscles and detailed description about pulses used. I can’t begin to paraphrase this esoteric data, But if you’re looking for real quantifiable FES values, you’ll find it here. Pulse width does Not Influence the Gains Achieved With Neuromuscular Electrical Stimulation in People With Multiple Sclerosis: Double-Blind, Randomized Trial. the study did not find what it expected with regard to pulse width benefits, but it did find:
            “The 6-week intervention elicited clinically significant improvements in the primary outcomes and several secondary outcomes in individuals whose mobility was compromised by MS......Secondary outcomes suggest that the improvements in mobility likely involve increases in muscle strength and the control of muscle force for some of the involved muscles. These findings suggest that several weeks of NMES applied to the lower-leg muscles can improve walking performance and provide some symptom relief for persons with mild to moderate levels of disability caused by MS.”.

            Yay! This is great finding that FES for only 6 wks helped people with mild/moderate MS disability — Surprise! It is beneficial to use before a MSer is paralyzed and provides similar benefit in ways it helps stroke victims.....however, the study explains why it is hard to design a study of this kind —-“A major limitation, however, is that the actual influence of NMES could not be evaluated, because of the absence of a control group that would have assessed a potential placebo effect. In addition, we were unable to assess the outcomes during the intervention and for a longer follow-up period”
            This is referring to the muscle maintenance part that dr whals has discussed...an MSer needs to do more muscle stimulation just to maintain. So there you have it, a good explanation of how doctors observed how FES benefits MSers and also the concerns scientists have about demonstrating that FES benefits are long lasting. I see This as a significant issue —-Dr. Whals asserts that MSers need continued FES for muscle strength gained AND muscle maintenance. The question is then why muscle maintenance/ loss prevention for MSers can not be an objective of PT???

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            • #51
              My hope is up/ I’m doing FES!

              Hi again, I know I’m a bit chatty here, I hope you all don’t mind too much. I wanted to add my recently concocted plan to FINALLY try FES with professional guidance, hopefully get lasting benefit and not go bankrupt. I contacted Neufit (referenced above and is Endorsed by dr Whals).

              https://www.neu.fit/schedule

              Neufit hAs certified locations around TX, and some other locals. Some providers have PT background, others have personal training or chiropractors. The headquarters is in Austin. Tx. And they are closest location to me with PT provider. They offer pt rehab with “combined modalities” incorporating Neufit. They also offer 5 day a week group exercise classes with Neufit. I was told many mobile MS patients go there, often starting with rehab then switching to group or personal trainers. Unlikely my insurance will pay for this rehab (no hard data etc ) I was told a lot of people coming from far locations will stay 3-5 days and do 2 rehab sessions a day. I think with planning I can swing 3 days economically. I also could probably afford to try out the group classes. It is $50 a group class or $40 per group class if bought in blocks of 10. I won’t be able to afford to rent the device to bring home, however. With authorization from dr, one can rent Neufit after rehab for $1000 a month (includes pt plan) then approx $850 a month afterwards. Regardless, I want to try out the rehab.
              “We dream to give ourselves hope. To stop dreaming - well, that’s like saying you can never change your fate.”
              ― Amy Tan, The Hundred Secret Senses

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              • #52
                Suebee, I'll be very interested in your opinion of how well this works for you.

                Larry

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                • #53
                  Larry and all update on my quest to do FES. Why I drag my heels (ms pun??) I have enough info on FES to know one needs to use it frequently and ongoing to get benefit as MSer. My problem is I can swing financially a few workouts but not 6 wks which is current hard data on getting benefit and definately not ongoing. I think my best solution is to find place I get instruction and after a few workouts get to bring a fes evice home to use at home. I'm taking a minor detour on my quest to fes by consulting with a board certified physiatrist. I want to understand which muscle groups will benefit most from strengthening and what exercises I should do to do the activities I want or need to do in my daily life This specialist goal is "To restore function, reduce pain, and improve quality of life
                  A specialist in PM&R, also called a physiatrist, is a doctor with training in treating disorders or disability of the muscles, bones, and nervous system.
                  A physiatrist may lead a team of medical professionals and is dedicated to caring for the whole person, including treating pain, restoring function, and improving quality of life. Conditions that may be treated by a physiatrist"
                  I was told this specialist would be most beneficial before I start a PT program. So this is my next step...consult with a physiatrist. I'm curious to know if any of you out there have benefited from.such consults????

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                  • #54
                    Hi Suebee! I imagine the pandemic might have put a damper on your estim efforts so I'm sorry for that. I thought of this thread when I saw a headline a couple of days ago about a "Portable Neuromodulation Stimulator" (PoNS) that was recently granted breakthrough device status by the FDA (it is already approved in Canada and is being used in various places there).

                    Here's some info from an article from Multiple Sclerosis News Today (https://multiplesclerosisnewstoday.c...e-sclerosis/):

                    The device, which is meant to be used in combination with therapeutic exercise programs, works by sending mild electrical signals that travel through nerves that connect the tongue — where the device is placed — to the brainstem. The brainstem is a region at the base of the brain that regulates vital functions (e.g., heart rate, respiration), as well as sensory perception and movement.

                    This mild electrical stimulation is thought to increase the brain’s*neuroplasticity*— the brain’s ability to adapt or rewire itself to preserve function following damage. The stimulation is expected to promote patients’ physical rehabilitation.

                    Now, I don't think you're in Canada and so this probably is no use for right now since it's not available in the US yet, but it just sounded super intriguing to me and I just thought I'd pass it along. Here's a website on the device which lists the places in Canada where you can currently find it: https://www.ponstreatment.ca/en/

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                    • #55
                      Heather thanks so much for posting the link to pons stimulation. It is exciting to see it. I realky think FES could be a key tool that helps rehab MS weakness AND help MSers maintain strength and slow decline. It is not common here, but I found only one PT place (a good drive away) that can include FES in my treatment plan. However, you guessed rt that i've been really nervous to start with pandemic. FES costs more, I have to buy device, but PT office orders it. I wasnt able to get info on what hrtz or muscle groups they work on. I wish it was more easily assessible. But glad I found this place, despite drive. It would be interesting to say the least if they start using pons stimulator....
                      Thanks again Heather. Stay well friends

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