Finding the Correct Rehab Team for My NMO

My hopes and dreams of one day getting up from my wheelchair and walking freely are partly kept alive by my rehab team. Don’t get me wrong, there are other people and medications that help along the way, but nothing takes the place of my rehabilitation.

When I was diagnosed with NMO, my body was going through physical changes. I was once thought those changes would come back once I was placed on the correct magical medication. My neurologist at the time believed it was a good idea to work on my body and bettering my walking by going to a rehabilitation facility.

They had no clue about NMO

Over the course of three years, I had tried been over 4 different rehabilitation facilities - including an at-home service. While most of these places were very professional, the lack of knowledge about patient experiences due to neurological effects on a body was a big turn off for me.

Most physical therapists had no clue what NMO was, and then I had to spend the rest of my time explaining my NMO journey. I started realizing that I needed a rehab facility that was more knowledgeable on the subject and that would treat me like a patient and not a number.

When it came to the at-home facility, it was during COVID so I was conveniently at home. But there was a limit to the things I could do. I knew I needed something new, some place where I was understood, with a team that just didn’t want to treat me for the moment but more for long-term living.

A program specializing in neurology

After some research and various phone calls I found a place especially for me! They had a neurological day program, which excited me and gave me so much hope. Finally, a rehabilitation facility that had a specialty in neurology and the best part was that they knew what NMO was.

My first day was assessment day, and I was tested on many things that my neurologist would normally test me on. I also met my physical and occupational therapy team that specialized in neurological therapy. For the very first time I also had a doctor who would be dedicated to checking in with me, which made this rehab facility stand out even more.

Everyone was so nice, called me by my name, understood my diagnoses and the effects it had on my body. I was blown away by their knowledge on NMO and they assured me what I was going through was to be expected with NMO.

PT and OT sessions

As time passed, I attended my PT and OT sessions religiously, every Monday and Wednesday. I worked hard on strengthening my body. I was excited because I finally felt understood when my body spasmed unwillingly. I was being educated about ways to deal with my body. It was truly a judgement-free zone.

This was a different experience from any other facility I had been to. My PT, Angela, saw me struggling with my manual wheelchair and recommend a get a light wheelchair with a smart motor to help me move with ease. She also saw the need for me to get a at home standing frame which would help me physically. She was able to work with my insurance and help me obtain these devices. No other rehab facility had even mentioned nor questioned my at-home necessities. This to me was an act of great kindness.

Thinking outside the box for NMO

Once or twice a month I would meet with the doctor to talk about my medications, progress at the rehab, and any other medical visits I have had to help me progress in a positive direction. She is very knowledgeable and wise, and is always thinking outside the box for me.

The experiences I’ve had during my time at this facility have been incredibly beneficial to my health. The staff is very caring and helpful. I finally feel I found a place where I feel like I belong.