Working 2 Walk

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Monday morning in the ballroom – Part 1

Posted by katewillette on April 14, 2008

You know, I think they should really figure out something else to call these rooms . . . I mean, when was the last time a ball was held in this room?  For one thing, it’s carpeted.  Okay, I’m back to work now.

Sue Maus is introducing Jennifer French of the Neurotechnology Network.  The focus of today will be how to stay healthy while the researchers finish off the cure, and how to use technologies that are available right now to maximize well-being.

Jennifer French of the Neurotech Network is going to run this show; she rides her chair up the ramp and then stands up behind a walker. That’s demo #1, because she’s using technology to get up, and part of the program is going to be her explanation of how that works.

The Neurotech Network is a nonprofit that focuses on education of and advocacy for access to neurotech devices and therapies.

“Neurotech”  is the application of medical electronics and engineering to restore or improve the function of the human nervous system . . our bodies already know how to use electrical signals . . . neurotech is NOT a cure, but it can provide ways to fight secondary conditions and stay healthier.

Not every injury is the same, and neither is every kind of neurotech.

There are 2 categories . . internal and external .  . internal is like pacemakers, external is completely outside the bod.


1950-1970 – many firsts for implants – hearing implants, brain electrodes, visual cortex

1969  – NIH neural prosthesis program ( no doubt due to returning Vietnam vets)

1976  – FDA began to regulate implant devices

1980’s –  advances of new technology and electronics – like computers, things got much smaller and better

1990s – typical move from the lab to the market – lots of weird things were tried and discarded.

2000 and beyond –  device availability  –  think about how many people are walking around with cochlear implants that restore their hearing.  (It would seem odd NOT to take advantage of this technology, eh?  But it’s hard for lots of us to get past the wish for a more natural cure.  Just my opinion.)

Some areas within neurotech

Neuromodulation . . . which is about devices and therapies that allow the body to adjust — deep brain stimulation helps people with Parkinson’s by modulating tremors . . . it also helps with neuropathic pain.  There is also spinal cord stimulation, which blocks pain signals.  There is sacral nerve stimulation, which keeps overactive bladders from messing with people.  Transcranial magnetic stimulation treats depression.  Surface stimulation is good old e-stim.  Implanted drug delivery systems, she says, we’re going to get to later with a demonstration.

Neural prosthesis, which capitalizes on the existing nervous system to help a limited function.  They’ve invented a foot-drop stimulator; later we’ll get to see a user .  There is FES for hands and FES for feet.  There are bladder stimulators for both flaccid and high-tone bladders.  There are breathing systems that let some people breathe without vents.  There’s a cough assist device.

Neurorehabilitation, this is things like e-stim, plus neuro-regeneration stimulators, neural re-education systems and neuro-robotics.  (It alls sounds crazy high-tech and kind of out there, but there are people in this room right now who are benefiting from many of these technologies, which is the point.)

Neurosensing and diagnostics; this is about peripheral nerve sensing devices, which are on the market for diabetes, carpal tunnel syndrome, and sleep monitoring systems for those of us with apnea.  There’s a brain – computer interface that uses electrodes to sense the cortex.  There’s pressure alert, which lets chair users know when the pressure is getting dangerous, and EMG sensing which together with neuromuscular stimulation lets your muscle know when the  brain is telling it to move . . and then moves it.

Resources:, a newsletter, user experiences (which is what today is about), a central database of neurotechnology that is searchable by condition.  (That’s cool.)  Finally there is the neurotech awareness coalition, which coordinates between patient groups and those who offer resources to them.

Challenges include insurance reimbursement.  The decision not to pay for any of this is now 10 years old, which means that it was made in the very early stages of the technology.  Another challenge is the utter lack of knowledge out there, either among end users or the medical pros.  There are also regulatory barriers, mostly due to ignorance.  Finally, tere is the Last Resort Syndrome, which is the notion that these technologies are so tentative and bizarre that you wouldn’t use them unless you were truly desperate

So, how did Jennifer stand up at the beginning of her talk?  She has implants in her quads, glutes, hips and lower back.  These are connected wirelessly to a box the size of a box of cracker jacks she wears at her waist.  “I walked down the aisle at my wedding, using this technology.

Whoa she talks fast — I’m pretty sure that was an hour-long lecture delivered in 15 minutes flat.

Now Kelly Emmett from Medtronix is going to talk about Neuro-modulation and spasticity control- the implanted baclofen pump.   Kelly, who is a physical therapist, is explaining what spasticity is, not that anybody here needs an explanation.

She’s showing a video of a man who can’t sit in a chair because his spasticity prevents his legs from straightening.  They’re bent at the hip and the knees.  She says that lots of people are in nursing homes because of resistance to using the baclofen pump .  The video shows her trying to move his leg; the more she’s pushing, the more he resists.  So, just before she treated him his neurologist came in to say that this was the best day he’d had in months and maybe she should hold off.  She’s saving the punchline . . . has a slide up about the secondary effects of spasticity, which we all know: contracture, skin breakdown, pain, lack of sleep, lack of opportunity and access.

Showing another video: severe clonus in a patient’s foot, then the foot in a boot, and another with a patient’s curled fingers, then again relaxed.  She says that the baclofen pump should not be a last resort.  It’s an implantable drug delivery system that reduces spasticity and prevents or reduces secondary problems.  It’s a reversible FDA approved drug therapy.  It works for spasticity due to spinal issues or brain isues, and it’s safe for both adults and children.  It’s also not forever . . . there are many patients who have used it and then gotten rid of it.

The way it works is, they give you a test dose through a lumbar puncture, usually done as an outpatient procedure. They put a pump into the side of the patient with a catheter that connects around T10.   It releases the medication by a little computer.  The fill the thing every 3 or 4 months right thru the skin at the doctor’s office.  People tolerate this procedure easily, (including children).  The dose can be continuous or in time released boluses.  You can alter infusion rates throughout day and night.  People with MS often find that they like to turn it up at night.

Complications include over and under-dosing (just like with oral meds), withdrawal, side effects, infections, pump failure, catheter complications like kinks or dislodgement.  Ha, Kelly says she knows a guy who has bungee jumped with the catheter in.  That dislodged it, and she doesn’t recommend it.  Jeebus

Okay, back to the video of the guy in the nursing home with bad spasticity.  There’s a split screen showing her moving his legs pretty easily 3 hours after the first bolus of baclofen.  He got the implant.  It took him 3 months to get out of the nursing home — he wanted to walk and that didn’t happen, but he did manage to master independent transfers, which allowed him to be back in the world.  Not a small thin

More info here:,,, or email her directly at

Question: What’s the size of the pump? She goes to get one out of her bag.  From where I am in the back of the room, it looks like a compact–the thing my grandma used to put her makeup.

Does it bother people?  She says most people are aware of it in the same away you’re aware of a cell phone on your belt.  Once they get used to it, it doesn’t bother them, and unless it’s actually touching something it shouldn’t, there’s no pain

Yikes, missed some questions . . . these people are cramming their talks in at warp speed.  It’s a challenge to comprehend, process, choose what to leave out, and get coherent notes.  Apologies to those speakers who read this and feel like I’ve missed something important — please feel free to use comments to revise and amplify!


2 Responses to “Monday morning in the ballroom – Part 1”

  1. Jennifer said

    Kelly is from Medtronic. The demonstration was on ITB Therapy.

  2. Michael Allen said

    I had Deep Brain Stimulation in 2004 to try and help with neuropathic pain. Do I still have it, yes. Hss it imporoved from the procedure, yss a little. A little is enough for me to say it was succesful. I would do it all over again which I sort of have since the first implant got infected. I am welling to be a genuiepig for any procedure that can or may hslp with my quality of life

    If you have any questions let me know.

    Michael Allen

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