Recovery Isn't a Race: It's a Marathon
When I first started outpatient physical therapy in 2014 with Sarah, my physical therapist, I could not get out of my bed by myself let alone stand up. Over the years, we have built trust: I trust her decisions when it comes to my care and pushing me to try new things, and we bounce off each others' ideas when it comes to my how we approach different tasks in an effort to reach my ultimate goal of walking again and gaining as much strength as I can.
Physical therapy was helping me reach my goals, until it wasn't
When I arrived for my most recent therapy session, my PT Sarah was still with a client, so instead of canceling my session she asked another PT, Amy, to work with me in her place. I was okay with that because I know things happen, but I was not okay once I realized that, instead of helping me, this PT would turn what is usually a sunshine-filled hour of my day into a massive rainstorm.
I'd never worked with Amy before. I'd seen her around before and eventually came to learn that Amy is also my PT's supervisor. Amy told me that I was due for an evaluation which required me to complete three tasks. After I completed the tasks as she asked me to, she told me that she was going to end my physical therapy that very day, because when she looked back at my chart, she noticed that there had been "no difference" in my progress since the month prior.
I can't tell you how upset I was
I explained to her Sarah and I had set other goals, and she was going to work with me until I felt I'd achieved some progress with walking. Amy's response was that physical therapy is only meant for me to get enough help so I can "make it out in the society," and it is not to be an ongoing process. At this point I was angry and upset.
Judging me without knowing me
I told her that it took 9 years' worth of work and progress to get to where I was at that moment. At that point I was able to walk up stairs, walk around with a walker, and even drive. I told her that she didn’t know anything about me and I didn’t think that it was right for her to make the judgement that physical therapy wasn't helping me after 20 minutes of working with me. After all, no matter what she said, I knew I was making progress. Just because I didn’t walk as far with her as I'd done with Sarah in the past should not have given her the justification to tell me to just work on myself at home. I couldn't believe that she was going to take this away from me.
Bringing me back to the past
Hearing Amy say what she said brought me back to a time when an OT at the facility where I was living told me that, if I hadn't gained any strength or been able to stand on my own by that point, I'd never be able to. If I had listened to him or even had Amy as my PT originally, I don't think I would've progressed as much as I had. When I woke up paralyzed for the first time in 2013 (unbeknownst to me I was in the midst of an NMO attack), no one knew what the future held for me. No one knew if I would ever be the same as I once was. I didn't even have the right diagnosis! But I was told that, if I had a shot at gaining my strength and mobility back, there would be a very long road ahead of me. Luckily, the very first PT and OT that I worked with when I was first hospitalized encouraged me to never give up. That stuck with me!
Everyone is different
Here's the bottom line: Every patient is different. Just because you may not recover as fast as someone expects you to does not mean that you aren't going to get better. I have learned to celebrate even the smallest signs of progress. We tend to be harder on ourselves because we want to gain our independence back, and return to how we used to be before we had an NMO attack. When you have someone like Amy telling you that you've made no progress and she didn't want you to continue with PT, it can crush all of your motivation.
It's not what you say, it's how you say it
Often times it's not what you say, but how you say it. I would have felt better if Amy would've approached me differently and had allowed Sarah to go over the evaluation with me, continuing the relationship that we'd established over the course of 9 years. We could've come with up with next steps, like formulating a routine for me to do at home, and later having me come back to assess my progress. I still have my goals; I've been doing this since 2014, and I'm not giving up now!
Were you misdiagnosed, prior to being diagnosed with NMOSD?