Before starting this review, please note that I am not a medical professional and the following information is anecdotal. Please check with your child's medical team before moving forward in your exploration of using a WalkAide. I am also not affiliated with WalkAide or its developer, and this is not a sponsored post.
As I've mentioned in a previous post, Buster has had various bracing, and medical and surgical interventions to help with toe walking. He's had SMOs, AFOs (hinged and unhinged), calf-lengthening surgery, and Botox injections. His toe walking started when he was around 3 or 4 years old, and progressively worsened as his legs grew. After a successful calf lengthening surgical procedure allowed him to stand with both feet flat on the ground, we knew we wanted to stay ahead of any muscle tightness and growth hindrance, and also help Buster combat muscle atrophy while simultaneously encouraging a "proper" gait. During the first year of the pandemic, Buster's physical therapist allowed us to take home a TENS (transcutaneous electrical nerve stimulation) unit which, theoretically, would help build up Buster's calf and shin muscles. We had to stick on electrodes, and, essentially, shock his leg to stimulate the nerves and muscles, hoping to build strength and muscle memory so that he could eventually lift his toes while he walked. Although I saw the benefit in using the TENS unit, it was a challenge, logistically. Finding the right location for each electrode was hard, and the electrical stimulation was uncomfortable for Buster.
We are incredibly lucky to have a physical therapist who is always looking for new solutions and is ahead of the game with the latest research. *Side note: if you are not happy with your current PT and you feel your child isn't receiving the best treatment, FIND A NEW ONE. See this post for a pep talk about pushing through the overwhelm* I have always done my own research to find new procedures or aids to help Buster with his physical movement, and I had come across WalkAide a few times over the years, but there wasn't a great pediatric option when I first found the device and so I held onto the idea for quite a while. When our PT and I discussed it, we knew it was something to try. If it didn't work out, we could hold off for another time when it would be a better fit (literally and figuratively).
The Trial Period
In order to learn whether a WalkAide would benefit Buster we went through a trial period. Another physical therapist in our hospital network had been trained with WalkAide and was willing to allow us to borrow one for a month-long testing period. I brought Buster in for an hour-long fitting session, during which the WalkAide was fitted to his leg and programmed to move correctly with his gait. The WalkAide itself is a padded cuff, with two gel-backed electrodes and a battery pack. Not only does the physical cuff itself need to fit properly around a patient's calf, it also needs to stimulate nerves in the leg at the proper time in order to lift the toes and provide support for a stronger heel strike. This timing is different for each child, based on their unique walking pattern.
Once Buster was fitted and the pack was programmed, the PT evaluated his gait both with and without the WalkAide, to document progress along the way. She timed his walking over a specific distance, observed him going up and down stairs, running, etc. She logged the details into Buster's file so his usual PT could access them and provide updates with each subsequent visit. The specialist PT made marks on his legs so that I could make sure the electrodes were properly placed, and we had a wearing and break time regimen for the WalkAide. We were to return for a final evaluation after a month and decide whether we wanted to move forward and order Buster his own WalkAide unit after we tested it during Buster's normal, daily routine. He was incredibly patient throughout the appointment, which was tedious and less engaging than his typical PT sessions when he plays basketball, uses the treadmill or jumps on air-propelled rocket launchers to strengthen his leg muscles, but once he was properly fit, we were off and running, so to speak.
I'll go into more detail in a minute, but after the month long trial period, we decided to purchase Buster his own WalkAide. The testing period definitely had its challenges, but, believe me when I tell you, the challenges were minimal in comparison to the benefits we observed, after only wearing the unit for a month. After the trial period, his PT evaluated him the same way the specialist PT did during our fitting appointment. Buster was able to walk farther with the WalkAide than he was both with and without his carbon fiber AFO. He was able to balance on one leg longer, run faster, and go up and down stairs with more balance and speed. In addition, Buster improved in these areas when he was tested both with and without the WalkAide, which means that wearing the WalkAide, for only about a month, improved his gait so much that even when he wasn't wearing it, there were residual improvements! SOLD.
Buster has had his WalkAide now for about three months. Just like the trial period, there have been ups and downs. I'll try to detail out as much as possible to provide a clear picture of what it has been like. I will also go into how it works, how we purchased the WalkAide, and what it was like to work through insurance approval.
The Pros
1) There is no better way to say this: WalkAide is like magic. After years of AFOs and SMOs, the fact that this "cuff" (as we call it in our house) is able to change Buster's gait entirely is unbelievable. The band wraps around Buster's calf, with the electrodes lined up to two nerves that are stimulated at the proper time, pulling Buster's toes up so he is able to land flat-footed (rather than on his toes) while he walks, runs and even rides a bike. The device works on a tilt and swing mechanism. Because I am not a physical therapist, nor a doctor, nor a WalkAide expert, the description from their website explains its functioning like this: "Utilizing a tilt sensor and accelerometer technology, the WalkAide stimulates the common peroneal nerve to lift the foot at the right time during the gait cycle, prompting a more natural, efficient, and safe walking pattern." Sounds great, right?! When people ask us how it works, I usually say, "When Buster's leg tilts to a certain angle, an electrical pulse stimulates the nerves in his leg to lift his toes and clear them for a more natural walking pattern." Sometimes medical device language can get bulky, so I do my best to simplify, especially for people we encounter who have no idea about cerebral palsy, gait patterns, or toe drop. The electrical pulses are delivered via electrodes that are Velcro on one side and attach to the cuff. The other side of the electrodes have sticky gel and attach to the leg in a very precise spot according to the child's physiology. Long story short, it just...works, at the right time, without any adjustments to the programming on our end. I've also learned that there is a "pediatric" mode, of sorts, that accounts for any differences in walking patterns, and this can be adjusted by a physical therapist. That first fitting appointment Buster had? That was part of it---making sure the WalkAide worked for his specific gait pattern. It is a custom device, in terms of its programming.
2) It is one device, with no extra parts to keep track of. The only "extra" pieces I deal with are electrodes that need to be replaced every so often, and a single AA battery. There are no extra straps, switches, or padding, unless the fit needs to be adjusted. There are extra pieces in order to ensure a snug but comfortable fit, but these are not necessary. The WalkAide does not need to be charged after each use, and in fact, the battery lasts (in our experience) over a month with daily use.
3) Buster can wear whatever shoes he wants! Or, NO SHOES! What is this miracle?! As any parent or caregiver of a child with braces can tell you, finding shoes that fit over AFOs or SMOs is an absolute nightmare. I can't tell you how many posts I see in cerebral palsy Facebook groups, specifically, asking about the best shoes to fit over braces. I created a whole post on my suggestions for that dilemma, but we no longer have to fight that battle and I am so thankful! We live in a cold climate during the winter, and finding snow boots that fit Buster's AFOs over the years was the most arduous of tasks. He also could never wear flip flops or sandals without heel straps during the summer, so he often went barefoot while in our yard. I'm sure that hindered his ability to keep his calf stretched, which undoubtedly led to the need for his calf lengthening surgery. He is definitely my child, as he loves shoes, and he was thrilled when I told him he could find whatever sneakers he wanted to wear for PE class. It's the simple things that make me so happy with the WalkAide.
4) The WalkAide builds muscle and supports neuroplasticity. One of my complaints about AFOs and SMOs is that they are passive devices. They helped Buster keep his calf muscle stretched but they did not build muscle strength. His affected muscles on his left leg are smaller than those on his right leg. Although he is only 6 years old, if he continued to use only braces, this discrepancy would be much more noticeable as he grew. He works on leg strength during his PT sessions but that is only once a week and we do not have sessions continually throughout the year any more. The WalkAide also promotes neuroplasticity (the ability of the brain to change and adapt over time) and creates new neuropathways. As Buster walks with a more "proper" gait using the WalkAide, his brain is learning a different walking pattern that will, hopefully, become habit over time. We always tell him, "You have to wear the brace/WalkAide/cast so that eventually you don't have to wear it." It's a confusing concept for him to grasp, but essentially, we build motivation by explaining that hopefully these walking support systems will help him so much that he may not have to continue to wear them forever.
5) This may be the last walking device Buster needs. Although this is a pediatric version, I assume he will be able to use it for years. Usually he needs a new AFO at least ever year, if not twice a year, due to his growth. The mechanical portion of the WalkAide comes off of the Velcro cuff and theoretically could be added to a larger cuff once this version becomes too small for him. This should also cut down on any appointments that would be have been required for brace fittings and adjustments.
6) All of the pieces are detachable, and the fabric pieces can be cleaned. At the end of the day, Buster is so sweaty underneath the WalkAide. After all, it is basically suction-cupped to his calf, and provides no real breathing room for his skin. I imagine in the summer months this will be rather disgusting so I find comfort in the fact that I can clean the WalkAide :)
The Cons
1) The electrodes are sticky, which is a positive and a negative. The electrodes have a gel on one side that is sticky enough to attach to your child's leg, but "unsticky" enough to come off and be reused the following day. The stickiness is not so strong that it hurts him when we remove the WalkAide, but that also means they can slide down his leg if he is very active during the day. Our PT has said that the electrodes can be used over again for up to three weeks. We have been lucky if we can reuse the electrodes twice. Ugh. Buster is an active kiddo, so he has come home from school with the WalkAide around his ankle, and the electrode gel still intact at the top of his calf. When I ask him when it started to slide, he is not able to tell me. It's been pretty frustrating to think that he has worn the WalkAide all day and it may have only been effective for the first hour or so before his gym class.
2) The electrode placement can be a challenge. Of course something needs to be installed correctly to function properly; however, there are no clear directions for how to do this and every child is different. Our PT marked Buster's legs with a Sharpee so that I was able to find the precise location for each electrode, which was very helpful. I had no idea how exact this science needed to be, though, until I carefully observed Buster's gait. Some days the WalkAide appeared to help him, and other days it seemed like it wasn't working at all. I learned that this was because I hadn't been putting it on in the exact spot it was meant to be worn. Each child's physiology is different, so I cannot explain in this post where it should go if you are having trouble yourself, but I will give you a tip for how I've found the proper placement. At first, I was focusing too much on the actual electrode placement, when I should have just trusted that the electrodes would hit the nerve properly once I had the cuff in a best fit position. Buster and I had two visits with different physical therapists to ensure a proper fit. Once, he had it tightened, which meant less sliding down his leg (see Con #1), and the second visit resulted in adding more padding to the cuff portion of the WalkAide, which also meant a better fit. After the snug, close fit to Buster's leg was accomplished we had less of a problem with the electrodes not staying in place, and I was able to ensure proper function for him. On the front of the WalkAide there is a small, orange stripe. I have no idea what its purpose is, but I have used that as a guide for placement on Buster's leg. The cuff itself is not perfectly round; it has a small, flatter portion that fits perfectly on the ridge on one side of his knee. I have been using that as my starting guide when I put it on in the mornings. Our PT also told us to turn on the device, and press the stimulation button and observe Buster's foot. If his toes lift straight up while pushing the stimulation button, it is on his leg correctly. Needless to say, this has taken some getting used to, but we are both much more confident now when we put it on in the morning. It doesn't seem to bother him as much when it is working properly, and the electrodes now stay on longer and are reusable more times. Right now we're in the middle of a record, having used the same electrodes for a full week!
3) It's bulky...and and a little weird looking. The pediatric version of WalkAide is not a perfect-sized device for little ones, yet. Buster doesn't want to wear shorts with it, and worries that people can see the shape of it through his pant leg. And yes, they can. The thing is kind of large and obtrusive. And it looks like he's wearing a small computer. Originally I thought it would be something cool for him to show off, as a robotic-looking part of his body, but at his age anything that makes him different is undesirable. His carbon fiber AFO is pretty minimal in design, and from the front, the only part that is noticeable is a small Velcro strap at the top of his lower leg and he doesn't mind wearing it with shorts. The WalkAide has a battery pack that is on the front of his shin, and it's super obvious. Kids want to know what it is as soon as they see it, and I think Buster would really like to forget that it's there at all. B and I decided that even if he only wore the WalkAide during the school year, under his uniform pants, it would provide enough of a benefit for him. I'll keep you posted about that.
4) He doesn't wear it during higher contact sports. We are lucky that Buster can participate in all of the physical activities that he does. We haven't made him wear his WalkAide during soccer or basketball because we are worried about damage to the device. We know that he would perform these activities better if he were wearing the WalkAide, but risking it is too nerve-wracking. At least right now. I'm hoping that we become more comfortable with him wearing it while highly active, once we learn how destructible or indestructible it is.
5) The price. Whoah. When we were in the initial trial period, what we were really evaluating was whether the WalkAide would provide enough of a benefit given its cost. The cuff and the electrodes can cost about $10,000. Add in buying packages of electrodes every so often (and more often than we anticipated) and this thing can cost a pretty penny, as they say. Luckily, our insurance covered most of the cost for us. Our PT compiled research and wrote a letter to our insurance company to provide solid evidence of the benefits for Buster. Our insurance company, as I imagine most other insurance companies, has previously denied coverage for treatments or orthotics based on lack of "medical necessity." This phrase is so vague, I imagine purposefully so. As a parent of a child with a rare disease and unique physical needs, I believe everything I submit for insurance coverage is a medical necessity. If it wasn't medically necessary, why would I pursue it? We battle this almost every time Buster has a procedure or requires imaging, and the onus is on us to provide proof to the insurance company that the claim is crucial for Buster's improvement. Luckily, our team at Buster's hospital system was willing to do the heavy lifting for us. Our PT submitted the information, as well as a physician recommendation/prescription, to the insurance provider and it was miraculously approved. It was not entirely covered, of course, but it was covered enough that it has been worth it for us to purchase.
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This post has turned into something so much longer than I thought it would be, and I know I will have more to add as we use the WalkAide more. I imagine what you want to know most is, bottom line, whether I recommend the WalkAide. The short answer? Absolutely. Although the list of pros and cons is relatively equal, the significance of the benefits outweigh the challenges we've faced. Most of the cons are logistical, and we have worked through them pretty well. As with everything, there is an adjustment period. The longer answer is, this all depends on your and your child's situation. The WalkAide may not provide your child with enough of a benefit to swallow the price tag, especially if it is not covered by your insurance plan. Your physical medicine and rehab doctor may not recommend it. Your physical therapist may not have the knowledge required to properly set up your child for success with the product. (I should mention that there are medical representatives that can work with your physical therapist to fit your child and offer support, so you may need to look into that if you'd like to explore use of a WalkAide.) I definitely think it is something to explore. I believe, strongly, that knowledge is power. If you check it out and it doesn't fit your child's needs now, it may later. If it's too expensive now, it might not be in the future. And, it might be perfect now! Have any of you used a WalkAide? Let me know in the comments below! I'd love to hear your feedback!
-M
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