The implantable microstimulator

A couple of weeks ago I took Nathan to the park in his kidwalk and he had a blast watching this one kid running around the park.

After some time, the kid came up to me and started asking me what kind of skateboard Nathan was using. He couldn’t understand why Nathan couldn’t talk or why his head drooped the way it does.

The mom came up to me and apologized for her son, and asked me if Nathan was using some a new kind of baby walker. As much as I wanted to say, yeah, it’s the new rage these days, I told her he had a brain problem.

She was super sweet and we started talking and she told me she’d just moved from the East Coast. So I asked why etc and she said they’d moved for her husband’s work because he is some kind of biomechanical engineer.

Come to find out, he was brought out from Boston by the Alfred Mann Foundation to work on a microstimulator. She told me it was being used now for stroke patients and that I should talk to her husband about it.

Well as it was the middle of the holidays I waited to call her husband until yesterday. So we talked for a little while and he told me about the device but he said it’s not really ready for clinical trials.

This is the device:
The Implantable Microstimulator

Basically it’s a very small chip the size of the top of a pen that gets surgical implanted between the skin and muscles in one place of the body (not sure which). The chip is wirelessly connected to a control device which, when activated, sends eletrical impulses to the nerves. The chip is active for many many hours so the nerves are receiving constant stimulation. This system bypasses the need for the brain to activate and manage the pathways for the nerves to work and movement to follow.

Eventually, the brain is so stimulated by the repeated signals that it learns the movements and gains teh ability to regain or gain a function that it lost or never had.

Amazing, huh!

This is from their website:

New Product Development, the Injectable Microstimulator System
In the US alone, 4.6 million people suffer from stoke and as many as 30% of these patients are presently paralyzed. In 1999, more than 1,100 000 American adults reported difficulty with functional limitations, activities of daily living, etc, resulting from stroke (SIPP).

To address this need the R&D team at THE FOUNDATION is developing a system of battery powered injectable microstimulators and microsensors, each of which can be controlled and monitored up to 100 times a second via radio communication. This system is intended to restore function to partially paralyzed limbs. For a stroke patient with partial paralysis, it will appear to as though he has regained control of the limb. THE FOUNDATION hopes to make the process of injecting the devices a simple office procedure, reducing the cost of an out patient, surgical procedure.

In addition, to bring this technology to market, the Foundation and Bioness are working together on this, the next generation microstimulator. This exciting device will be powered by rechargeable batteries and will communicate with others like it through a wireless network. Together they will restore function to patients with severe neuromuscular impairments through coordinated sensing and stimulation. Through a joint Foundation and Bioness program, clinical investigators are being recruited to research the vast potential of these devices so that this exciting technology may be rapidly available to the public.

After reading this, I researched and found Bioness’ website, and was so disappointed when I called them and they said the products they do have available based on this technology are not available for children, only for adults.

I was so upset!

Why is it that kids with CP are so ignored by the medical community and society in general? Whey is it that there are a million foundations for kids with leukemia or cancer but NOTHING for children with neuromuscular disorders? How come nobody cares about the plight of families of disabled children?

I wish I could understand why this is happening. Most importantly, I wish I could change it. I would do anything to change this situation. I wanted to, which is why I set up Empowering Special Kids.

But I found it was hypocritical of me to spend time working on the non-profit when Nathan still needs so much of my time. I figured that before I spent time and energy on the non-profit I need to make sure all of Nathan’s needs are met.

I wish many of us parents of disabled kids could form an alliance where many of us work together and share a little bit of time and energy to start creating a change towards disabled children. It really is time for change.