The Trial (Phase 3 Dawning)
So much has been going on over the past few months that I've not been able to find time to write. This post is long overdue. The month of May was dominated by multiple Graduation ceremonies and celebrations. Two college and one high school...all in different locations with varying degrees of accessibility, but that is a story for another time. In the middle of seeing our beloved students move forward to their respective next steps, I took several of my own.
First, from a professional standpoint, I decided it was time for a change, time to try something new, time to focus on my own goals. As many of you know, I have spent the past several years providing freelance Outreach Consulting & Support Services to first our local non-profit Center for Independent Living, and then second to a for-profit home health care company that provides Medicaid Waiver services. While both were important experiences, and I found a great deal of fulfillment raising awareness of the non-profit's services, I struggled tremendously with promoting a for-profit organization that had no qualms denying services to people in need whom they viewed as a liability risk...for whatever reason...which was well within their rights to do, but it made my work quite frustrating. As our contract came to an end, I took stock of my goals and decided that it was time to refocus Walking Spirit & Spirit Therapies, LLC on it's original mission, to enhance the accessibility of our communities through providing Accessible Diversity, Equity, Inclusion, & Belonging consultation & support services.
I'm taking a risk, giving up guaranteed monthly income that has supplemented my SSDI, and trying to make Walking Spirit & Spirit Therapies, LLC truly sustainable, which ultimately means letting the Disability benefits go. While there are incentives in place to help People with Disabilities make this adjustment, due to the way I initially returned to work after the accident, and a lack of understanding regarding these incentives and their timetables, most of my incentives were exhausted years ago. Once Walking Spirit makes more than $1470.00 in one month (a number that actually adjusts based on my disability related expenses which I can write off of Walking Spirit's income to come in under that cap), my monthly disability income will be cut off. My only incentives are that my Medicare coverage will continue for several years (assuming I can pay the premiums), and I have a five-year expedited reinstatement period if Walking Spirit fails. This bi-lateral above knee amputee is taking a leap of faith off a steep cliff and aiming for a moving target.
As we were preparing for the month of Graduations, and I was taking steps to refocus Walking Spirit, I received a call that even more was about to potentially change. I had reached out to my Prosthetist about the fact that I needed new liners (the silicone sleeves that roll onto my residual legs and create the suction inside the sockets that hold my prosthetics in place), that I was starting to have consistent issues with the batteries in my legs and power failures during the Sit-to-Stand process, that the ankle rotators were no longer consistently returning to neutral when I would unweight, and that I would like to eventually like to try the new "transfemoral" sockets that I had begun hearing about from other amputees...none who were bi-lateral (like me), but they were raving about the improvement in comfort and flexibility provided by sockets that did not come all the way up the hip. I was curious if this would be an option for me to try and knew this might be an uphill battle with my Prosthetist, as he has a very traditional and effective approach to fabricating "ischial containment" sockets that provide very stable suspension.
To my surprise, he responded that yes, he would be willing to try the new socket method, which he had received training on, but before we did that, he wanted to connect with the manufacturer of my legs to address ankle rotators (which are part of the feet) and the power failure issues. Very shortly after that conversation he sent me a message that Ossur, the manufacturer of my "Phase 2" Power Knees, which are eight years old now and long out of warranty, wanted me to test out the new "Phase 3" Power Knees, which had been on the market for about a year. The date for a trial was set and I began reaching out to my doctor to ensure that all of the issues with my eight-year-old set of legs, that cost $150,000 for the pair, would be well documented in his notes from my appointments. Ossur wanted me to get prior-authorization for the new knees before the trial so that they could give them to me then and there if I liked them. Communication between my Doctor and my Prosthetist and my Insurance company began (with me interceding from time to time to keep things moving), but it was highly doubtful that we would receive prior-authorization before the anticipated trial date.
The day arrived, we still didn't have authorization, but it was time to test the next-gen evolution of my current legs! While the Phase 2 Power Knees provide a great deal of stability, safety, and consistent gait when walking, what has made them so effective for me has been their robotic functions, which actually provides a functional lift assist when going from Sit-to-Stand. This one aspect of the Power Knees has spared my shoulders and back years of excessive wear and tear! There are other functions that are more effective for a Unilateral Above Knee Amputee, like the stair-ascent function, which engages the lift assist in a consistent cadence to help someone climb stairs; but the amputee has to move at the speed of the knee to climb the stairs, not the other way around, and while I could demonstrate the lift assist on a short flight of stairs, this was never truly functional for me as I had a second prosthetic to safely place on each step before I could advance to the next one. I just couldn't keep up with the cadence of the knee that was in stair-ascent mode and eventually it would time out while I was mid-stair, leaving me to stiff-leg the rest of the climb. Stair-descent has also been a challenge, as it would frequently get confused and instead of lowering me to the next step, the knee would frequently stay stiff, not understanding what I wanted and preventing me from lowering...requiring a mid-stair change in my approach to descend.
Irena Warriner (who had been my fiancée when I first tested the Phase 2 Power Knees) and I arrived at my Prosthetist's Office to find a team of 4 people from Ossur ready to work with me, in addition to my Prosthetist. They were all giving their workday to me, and I do appreciate that gift!
The "trial knees" were already fully charged and waiting for me in an exam room. I assumed that this was a set that regularly traveled around the country with the team, but later learned that they were a brand-new pair that no-one else had worn yet...they were really hoping that we would get that authorization from my insurance company before the end of the two-day trial period so they could leave me with the upgraded legs. They disconnected my Phase 2's from my current set of sockets and had the Phase 3's attached in about five minutes. It was time to stand up.
I leaned into the knees and was rewarded with an immediate lift from both legs into a standing position...even easier than with my Phase 2's. Typically, I would get my right leg to trigger the lift assist, which requires a simultaneous load of the toe and forward motion of the knee to trigger the lift, and my left leg would follow...rarely triggering fully due to the shorter residual limb on that side, which always made loading the toe difficult. On the first attempt with the Phase 3's I felt what support from a fully lifting left knee actually felt like! The next test was to sit back down.
Moving from Stand-to-Sit has been a challenge for a long time. It took me about 6 and a half years to figure out that if I staggered my right foot forward of my left, I could engage the Stand-to-Sit function on the left leg easier and the right leg would then follow, providing stable resistance while I'd lower my hips into a chair. I tried to do this and immediately noticed that I was not as stable in this position as I usually feel in my Phase 2's, and I was not able to engage the Sit-to-Stand function at all. Using their I-Phones, two of Ossur's reps dialed into each knee and adjusted the "trigger-points". As a result, I was able to sit down, though still encountered some issues with stability due to the smooth surface of the floor tile. We would play with this for the next several minutes, standing up and sitting down repeatedly until it was at a point where I felt I could practice it over the course of the remaining trial period. Now it was time to walk.
There was a brief discussion about manually setting up the walking functions or putting the legs into an "auto-learn" mode to allow them to self-adjust to my natural gait and speed. We opted for auto-learn, and I moved out into the hallway. I walked up and down the hallway a few times and the legs learned how I moved and programmed themselves, we then fine-tuned that programming over the next several walks. The advancement in the technology was amazing and easily felt! The Phase 3's were more intuitive than the Phase 2's, I could adjust speeds smoothly, and each leg was 2 pounds lighter, which does make a difference...I literally felt lighter on my feet!
Speaking of the feet, the ones we used in the trial were a little less responsive than what I was looking for and the ankle rotators didn't seem to give me much rotation, if any. The feet were shorter, which was nice...for the first time in 17 years I felt closer to my natural height, but we figured out that their alignment was causing a balance issue that would need to be addressed with the final configuration. Next it was time to test the more advanced functions.
We discussed Stair-Ascent and Descent, and the Ossur reps informed me that those functions were not "indicated" for Bi-lateral Above Knee Amputees, but because I had experience with the Phase 2's, they were curious to see what I would think. We agreed to activate those functions in the right leg, as that is my longer and more confident side. I approached the clinical set of steps in the office to test it out. Activating the Stair-Ascent mode was easier than in my Phase 2's and I was pleasantly surprised to discover that they allowed me to climb the steps at my own pace, and I reached the top of the 6-step flight easily. What was a fun little gimmick for me to demonstrate for PT students with my Phase 2's had actually become functional with the Phase 3's! We played with this for a few minutes and adjusted the "thrust" of the knee to a setting that I found most comfortable and then went outside to test some obstacles like curbs and slopes. While in the parking lot I also demonstrated a somewhat sloppy karate Kata (one with no kicks) to test my balance and range of motion. (Check out the new Adaptive Karate page on my website to see more adaptive Kata demonstrations w/the Phase 2's and my wheelchair).
After putting the legs through their paces, it was time to test them in the real world. I said good night to my team, left my Phase 2's at the office, and Irena and I decided to stop by my parent's house to let them see the next-gen legs. Instead of parking in their garage and utilizing the ramps and board walks that had been added for me to access their home without dealing with steps, I parked in-front, climbed the 13 steps up the front hill, then the 3 steps up to their porch, stepped over the raised threshold into their living room, turned left and then climbed the 20 or so steps to the second floor of their home, where I then visited my childhood bedroom and stood at my window looking out at their backyard for the first time in 15 years! (The last time I had attempted this was with my first microprocessor-controlled prosthetics (C-Legs) that did not have the lift assist, and I had decided I would never attempt climbing those steps again). The Phase 3 Power Knees changed the game.
As I began the descent, which the knees handled consistently and fluidly with every step, our neighbor from next-door came over...he had seen me going in through the front of the house and wanted to see what was up. He watched me come down the very steps that he had helped carry me up nightly, 17 years ago, while I was convalescing at my parent's home after the accident! I was not worn out, I needed to rest and drink a cold coke, and then walked out and down the steps to head home. We also went out to dinner and met some good friends that night, where I continued to test and become more acquainted with the Stand-to-Sit and Sit-to-Stand functions, the latter of which performed much better in public.
The following day I took them back to my Prosthetist's office and we tweaked the programming a little more. Then, at the end of the trial-period, as we had not received authorization from my insurance company, I watched as the Phase 3's were removed and my trusty Phase 2's were re-attached to my sockets. They saved the settings from the Phase 3's onto an I-Pad in the Prosthetist's office, to wait for authorization and the actual delivery day. They packed up the Phase 3's and I said goodbye to the team from Ossur as they left the office and took what could have been my new knees to Texas for some other amputee to tryout. They had given me such attention that they were pressed for time to make their flight.
After they left, my Prosthetist made certain that all of the connections on my older set of legs were tightened and ten minutes later we checked with the Office Coordinator to see where we were with communication with my insurance company. Her response: "They just emailed the authorization"...and the waiting game for all of the necessary components to make the new sockets, another new pair of Phase 3 Power Knees, and a different set of more responsive feet began.