New technology in physical therapy has this Pompe warrior excited

Last January, I wrote about how I adapted to having a high-deductible health plan. One way I did that was by putting off physical therapy until I met my deductible. At that point, I’d restart my physical therapy for the year.

I hit my deductible in March and called my physical therapy office. They’d been bought out by another company and changed staff and hours, which no longer worked with my schedule. I needed to look for another physical therapy company, my fourth to help with my late-onset Pompe disease.

As with so many things, I did a Google search for physical therapy services near Irvine, California, where I live. I didn’t know I’d end up in a place that would strap me in advanced technology that seemed straight out of a movie.

First, though, I had to find a new office. Once I found a few, I looked at their websites to learn more about their services. It’s important for me to look over their staff’s training and experience.

More times than not, staffers lack specific knowledge about Pompe disease. However, I’ve found that a physical therapist with a neurological background can relate to issues of weak muscles and balance better than others.

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Dwayne at the SoCal Elite Physical Therapy branch in Tustin, California, for his first appointment with HAL. (Photo by Dwayne Wilson)

I realized that time is precious with Pompe, so once I found a potential office, SoCal Elite Physical Therapy, I made the call. My first appointment was scheduled for May 11. I’d gone more than five months since doing physical therapy in an office, and I needed that extra help, even though I’d been doing all I could on my own. Finally, I was going to get back to working on my flexibility, balance, and strength with a therapist.

During that first appointment, I spent 20 minutes educating the therapist about Pompe. I explained my limitations and discussed what I’d done before and what my goals were now.

The physical therapist spent the next 40 minutes evaluating my abilities while I did some stretching exercises and other movements, all to see how I’d progressed over the past four years or so.

Near the session’s end, the therapist suggested that I might benefit from an exoskeleton technology called HAL, or hybrid assistive limb, that was available in the company’s Tustin, California, office. It’s used by the RISE Healthcare Group, of which SoCal Elite Physical Therapy is a part. HAL is used to help patients with neuromuscular conditions and other neurological issues.

The next day, another physical therapist called me to discuss training with HAL, later emailing me a website link to watch some videos on the technology, designed by the robotics company Cyberdyne. She also offered a free consultation. Why, of course! I’m always thinking outside of the box, and this technology sounded like something out of a Marvel movie.

As I walked into the lobby for my HAL consultation, I felt like I was entering a cyborg laboratory or something out of the film “RoboCop.” My mind started churning as I wondered what was going to happen and if I could do it.

Dwayne works with the exoskeleton HAL at his physical therapy appointment. (Courtesy of Dwayne Wilson)

They were able to fit my size-13 shoes into the lower limbs of the exoskeleton. They then strapped the unit to my waist and attached electrodes to my knees, legs, hips, and glutes. I was harnessed into the lift and ready for a computer program to be activated. They told me this exoskeleton was called Hulk. I thought I looked like a superhero Avenger, smashing Pompe with superhuman strength.

I stood too tall for the HAL lift to go on the treadmill, unfortunately, but I was able to use the exoskeleton while standing on the ground to do the exercises and movements my physical therapist recommended. The plan now is for me to use HAL once a week to help my gait, improve the balance and strength in my legs, and activate my hips and glute muscles more.

Dwayne works with HAL to improve his gait and balance. (Courtesy of Dwayne Wilson)

From what I’ve been told, I might be the first Pompe patient to use this HAL technology. That’s exciting to me, and motivates me to continue with my physical therapy appointments to see where this movielike experience will take me.

This Pompe warrior has had three appointments with HAL so far, keeping my muscles moving “On the Road to Pompe.” I hope I’ll be able to help my fellow Pompe warriors learn about this technology, which might assist them as well.

Note: Pompe Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pompe Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Pompe disease.