Feeling Discouraged with Physical Therapy Progress
Through my journey with neuromyelitis optica (NMO), there have been highs and lows. For me it has been 10 years since I have been in a wheelchair due to my NMO attack. I’ve been in physical therapy consistently since I got out of ICU, and I have come so far with my progress.
I still remember right before I was moved from ICU for 6 weeks to the rehabilitation floor at the hospital I was in. A doctor told me if I was to get anything back, it would be a long journey.
I was not prepared to what all it would take for me to get back on my feet.
Do you attend physical therapy for NMO?
Regaining mobility with NMO
I’m pretty sure others with NMO can relate. I have come so far in progress and have gotten stronger, but still feel like the goal of regaining mobility is just at my fingertips. As if dangling candy by a string.
I have been putting in the work, but at times get frustrated. Wondering why I can’t do certain tasks even though I’ve been working hard at increasing my strength in that area.
I go to the fitness gym, take a water aquatics class, as well as attend open swim where I can do my own workout at my own pace. I also work out in my home by watching YouTube, to do a particular exercise that will target the areas I need strengthening.
Even though I’m doing everything, I get discouraged. After 10 years I’m ready to walk today. I'm tired of sitting in my wheelchair to complete daily living tasks.
Why can't I walk?
I became paralyzed 5 months prior to turning 30. Now I’m about to be 40 and I’m still not where I want to be, walking with minimal use of adaptive devices.
I’ve come so far. I am able to walk with my walker, I can drive, and I actually have the strength to lift my wheelchair in my car without having to use a lift.
I often feel as if I’m stronger. So why can’t I just walk? It doesn’t seem that hard. Lately I have been working on walking with 1 small quad base cane, but am super nervous if there is nothing for me to hold on to if I feel unbalanced. I feel as if yes I’m still a little weak, but at the same time I am in my own head and feel nervous. Even though I have walked with that same cane 15 minutes ago.
Going places alone
Lately I have gotten to the place where I don’t want to have to wait on anyone, so I’ve been going places by myself. It can be scary because the world is a scary place and people can have ill intentions.
I want to travel and not have to worry if I will be able to still go because I have no one that can help me once i get to my destination. Or even feel safe. I want my independence back.
Working and disabled
It’s so unfair that even if you feel a little better, and have the strength to feel you can try and go back to work, you are under a radar because if you go a dollar over guidelines for any type of assistance, that gets snatched away.
Yes I am disabled. But I am also trying to have money to survive in this world, and enjoy life. It’s like whoever made the rules when it comes to being disabled and needing help? Be poor and we will pay for you to stay alive and get whatever you need. But the minute you try and better yourself we will take your resources, that help you navigate in the world.
We will pay for your expensive medications, but if you start to live comfortably we won’t pay for anything. And then I can’t afford the medicine to keep me alive.
It’s not fair!
It’s frustrating that the insurance will only pay for so many physical therapy visits. NMO is an ongoing disease, for those whom became paralyzed from an attack should be able to get as much therapy as needed until we are back on our feet.
It’s not a race it’s a marathon. And the people who are making these decisions, I’m pretty sure haven’t been through what the people they are supposed to help have, because changes would be made expeditiously.
It's okay to be frustrated
I find myself having these conversations with myself and God, being thankful and grateful for my progress. However, I am ready to get up! I have remained positive throughout the entire process but lately I have been very frustrated, and been okay with venting.
Although I vent, I never forget to pray. Pray for comfort, and strength as I go through this journey. I understand my battle is not for me, it’s to help the next person who may be like me, or look at my story and put their situation in perspective.
I give myself the time to be angry and frustrated. I vent to myself or my mom, or friend. Then I take that energy and I get up to my walker and walk. I use that energy and start doing a few exercises that I know are supposed to help strengthen my body. Then I look at my calendar and make sure I have set days to workout because, I don’t want that frustration to keep me down. I transfer that type of energy to make me work harder at my goal of walking and getting stronger.
I am looking forward to the day when I can leave that wheelchair behind and go on about my day. I do not even want some to ask me if a would like to sit! I have been sitting long enough.
Were you misdiagnosed, prior to being diagnosed with NMOSD?