My older brother (currently 31) has severe cerebral palsy - very similar to what Zain had.
He has been healthy recently, but there have been many close calls. He has frequent seizures and many normally routine things can be life threatening. Others have mentioned things like pneumonia.
He requires 24/7 medical attention, including a nurse who stays with him every night in case, among other things, his seizures get out of control. Thankfully for him, my mom is a nurse and we are fortunate that health insurance covers a very large amount of his medically necessary care.
Too many to list. But by the photos of it looks like it was severe, when the body is not able to move you get all kinds of chronic diseases.
I think I read somewhere that pneumonia is number one because of the difficulty of eating and drinking and the food or liquids constantly get into the lungs.
Can't speak to palsy but I had a friend with muscular dystrophy who passed in his late 20's. He couldn't swallow his own spit, and every 10 minutes or so I (or his attending nurse, or whoever he was spending time with) would need to help him drain it. He had the same sort of little vacuum that your dentist uses to get water out of your mouth during a cleaning or filling. I moved out of my hometown a few years before he passed so I don't know all the details, but I'm pretty sure his death had to do with respitory issues caused by his weakened muscles.
speaking as total layman wrt. medicine, i wonder whether it is possible to at least improve the condition a bit by implanting electrodes and triggering the needed muscle(s) similar to say pacemakers.
I am a physician, though not a specialist in that particular area (otolaryngology).
A healthy heart contracts exactly the same way (nearly) every time. There is a single electrical tree that coordinates the entire heart, so if you shock the tree at the right point, it will propagate down the entire tree in a predictable pattern and you get normal heart contraction "for free"
The throat is orders of magnitude more complicated. There are several major muscles involved in swallowing, each of which can have tens to hundreds of thousands of individual fibers, each with their own innervation. Coordinating all these fibers to produce a single coherent motion is complex and is not fire and forget - it involves some pretty intricate feedback loops between processing centers in the brain and stretch receptors in the muscle, with the brain refining and redirecting movements based on updated data from the stretch receptors.
It's like the sending a single strong electrical pulse to your lightbulb versus a CPU. It will probably do what you expect for the lightbulb (heart), but not for the CPU (throat).
Parent comment was about a simple trigger "similar to pacemakers", it was a reply to that. It was never implied that it's not possible with the current technology
That press release links to a journal article in Nature. I can't read the Nature article because it's paywalled, but the same group published an article in Brain in 2014 where they said "We propose that the functional state of... motor neurons was modulated by the epidural stimulation, presumably driving them closer to their appropriate activation threshold, enabling intentional movement." [1] Basically, they're saying that the spinal cord was a bit blunted after the injury. Movement signals were fizzling out as they travelled through the injured area. The stimulator is giving the injured region of the spinal cord some extra juice so that it propagates motor signals further down the body. However, it isn't actually creating a signal de novo - that's still coming from the brain. As for the latest Nature article, based on what I can see from the abstract, it seems like it is an update where they used a computational method to decide where to place the stimulators and with which strength to stimulate. But it's still the same basic idea.
Another thing to note here. In the 2014 article, they mention that they only tried this treatment in patients who had an intact sensory pathway and an injured motor pathway. Kind of speaks to what I was mentioning earlier - the brain can't coordinate movement unless it gets feedback from the muscle. I would presume that this stimulator therapy can't help with the sensory component, which is why the researchers limited the study to patients with sensation.
Somehow I did manage to access the article, and while I didn't quite understand exactly what they did, it does go beyond dumb amplification.
> Neurostimulation platform. Biomimetic EES requires the delivery of concurrent stimulation waveforms that are turned on and off with a precise timing4,8,12,21. Moreover, many activities necessitate adjustment of stimulation parameters in closed-loop via wireless links. To support these features, we upgraded the Activa RC implantable pulse generator (IPG) with wireless communication modules (Supplementary Fig. 1). This neurostimulation platform supported real-time updates of EES frequency, amplitude and timing from up to 10 stimulation waveforms8. The new paddle lead was interfaced with the Activa RC, which was implanted in the abdomen. We also developed a new software operating through touchscreen interfaces to enable the rapid configuration of activity-dependent stimulation programs (Fig. 4c). To simplify these configurations, wireless recordings of kinematics and muscle activity are displayed in real time, concomitantly to EES waveforms (Supplementary Fig. 1 and Supplementary Video 2).
Regarding Cerbral Palsy, it is... Cerebral, meaning that the peripheral part of the sensory and motor pathways should be intact. So what you would need to do is develop a controller interfacing with them both. That may not be trivial, but I do think it could be done by aplication of known tech and principles.
There are still muscles, they slowly deteriorate over time though. When my friend was in 2nd grade or so he could still run and play with the other kids. For a few years after that he could still use a controller to play video games. As he deteriorated further, he couldn't even do that, and got most of his enjoyment from watching other people play games. Heartbreakingly his nephew, who was named after my friend, also suffers from muscular dystrophy since it's a genetic illness.
I'm also sorry because I should have been more succinct. You are correct.
I, too, have a form of muscular dystrophy called Spinal Muscular Atrophy, type II. I deal with a lot of what's being discussed here, i.e. aspiration pneumonia.
That said, there is, at least in my mind, almost no functional difference between not having a muscle and having muscle so deteriorated that it no longer works. Electrical stimuli such as through a TENS unit does nothing.
Back to OPs suggestion though. You might be able to make a case for early onset muscle assist? Dunno, just spit-ballin'.
there's the inspire implant[1] for sleep apnea which sounds like what you're describing, but I'm not sure how much help it'd be in the case of muscular dystrophy.
