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  #51  
Old 11-04-2019, 11:38 AM
Suebee Suebee is offline
MS Master
 
Join Date: Mar 2015
Location: Houston, TX
Posts: 525
Default 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  
Old 11-09-2019, 05:39 PM
AMFADVENTURES AMFADVENTURES is offline
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Join Date: Sep 2009
Location: Colorado
Posts: 969
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Suebee, I'll be very interested in your opinion of how well this works for you.

Larry
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  #53  
Old 11-21-2019, 01:21 PM
Suebee Suebee is offline
MS Master
 
Join Date: Mar 2015
Location: Houston, TX
Posts: 525
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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  
Old 05-19-2020, 02:00 PM
heather510 heather510 is offline
Junior Optimistic Misfit
 
Join Date: May 2019
Posts: 4
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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  
Old 06-12-2020, 11:52 PM
Suebee Suebee is offline
MS Master
 
Join Date: Mar 2015
Location: Houston, TX
Posts: 525
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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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