My Weight Loss With NMO

It has been 11 years since I woke up paralyzed. I was in a wheelchair due to my biggest NMO attack, and at the time I had not been diagnosed. I was given high doses of steroids when I was in the ICU to help with the inflammation of my spinal cord that was showing on my MRI. This attack experience caused me to wake up paralyzed.

Prior to being in the wheelchair, I had always been an active person. I would exercise all the time. I had 2 gym memberships, I tried my best to eat healthy, and I had no trouble with walking. I actually used to walk on trials at different parks in my area, and I participated in different walkathons. I was a nice size and weight that I was content with at the time, but always still wanted to tone up.

Struggling to lose weight

Since being in the wheelchair, my weight has been a struggle. I cannot walk like I used to, so that means less calories are being burned on a daily basis. And not only that - the steroid that I was put on caused me to gain even more weight that was difficult for me to burn off.

From the time I got out of the ICU from the NMO attack that had me once paralyzed and in wheelchair, I have been in physical therapy. Of course there was some exercise, however the weight was not coming off.

Obstacles to weight loss

Once I began getting my feeling back, was no longer paralyzed and began getting stronger, I had to learn to walk, because I could not walk or progress to stand for a long time. A month before I became paralyzed I learned that I had a vascular necrosis of both of my hip joints due to the high doses of steroids I was put on, which slowed down my progress even more. So I had to limit how much I could stand and other exercises that would cause pain.

Another issue I faced was when I started working out, I would get on a routine and would try to work out 5 times a week, but I would then start to become sick and nauseated. I could not get out of my bed, with the same symptoms I would have as if I was about to have an NMO attack. I couldn’t understand because I thought the workouts would help me out, however even though I never felt tired my body and dealing with NMO felt as if it was too much work.

A hip replacement

I was able to get my first hip replacement in June 2021 and my second hip replacement in February 2023. At my pre-op appointment for my second hip replacement, I was the heaviest I have ever been in life - 265 lbs, which I was not happy with. I told myself once I get this hip replacement and heal, I want to continue to walk. Not only did I not like what I looked like in the mirror, but I wanted to continue to be healthy overall and not add any other issues due to my weight.

I had lost weight while in my wheelchair before but then I gained it back plus more. This time I knew I had to be determined to lose the weight and maintain.

Exercise routine from PT

As I started to heal from my hip replacement I also went to physical therapy, where they helped with strengthening my hip muscles and walking. I would then go home and continue to work on exercises I was given at physical therapy.

I began taking an aquatics workout class that I did once a week. It not only helped with cardio, it also helped with balance and coordination, and takes weight off my joints. It makes it easier to do certain exercises that are harder with gravity.

Finding at-home exercises

I would turn on YouTube and find videos of different exercises that I knew would work different areas. I found exercises such as seated cardio, and I would set it up on my TV and workout right from home. I would save videos from Tik Tok as well, where physical therapists from all over would show other workouts that I could do and it was like working with them right from my home.

In January of 2024, I joined a gym based in Atlanta that had just started an app that had live virtual workouts 3 times a week. They could see me and I could see them. The trainer was able to critique my movements and it became something looked forward to 3 times a week.

Finding fun in exercise

After a month I started noticing my clothes fitting a little looser, but I never got on the scale and just continued with the workouts. I added a day in which my trainer offered one-on-one workouts via Zoom through the app, and I further explained my goals. He came up with a more personalized workout and modifications for me.

I not only began losing more weight but I started to enjoy working out. My virtual group encouraged one another and it became a family! And it was fun - we joke around but still workout.

Tracking my progress

I decided to step on the scale because everyone kept asking how much weight I lost. I didn’t have a scale at the time and I was okay without knowing because I didn’t want to get obsessed with the number. I wanted to just go by how I looked and felt in my clothes.

I decided to buy a scale end of March 2024, and I had gone from 255 lbs in September 2023 to now I was 195 lbs. I was amazed - I had not been out of the 200s since I had to start using the wheelchair. Prior to that I was 175 lbs. I knew I had to keep working out.

Not only was I loosing weight, I was gaining strength, standing longer, and able to walk further. To this day I am still working out.

Portion sizes and nutrition

Everyone who has seen my weight loss in person and on social media has asked what diet am I on or what do I eat. They're shocked when I say I eat whatever I want. However, I do change my portion sizes, and if I decide to eat something that is not too healthy, I just don’t eat like that every day.

I learned to just control my portion sizes, and I do pick healthier choices as well when it comes to snacks on a regular basis. However, if I want that ice cream at times I will eat it! Birthday cake is my weakness.

I also go on 21 day challenges when I have no fast food, soda, bread, or artificial sugar. I work out a certain number of days a week, and eat clean and I’ve loss a lot during that time.

Your body and lifestyle

Overall you find what works for your lifestyle and body. These are things that I’ve done and have been working, and I have gradually lost more weight to get to 185 lbs.

I have fell off a little with eating and working out as much, however that’s okay. I will be starting another 21 day challenge soon, and I will get back on board!

It’s already hard dealing with an autoimmune disease like NMO. I want to remain as healthy as I can be while in the fight. Find what works for you and the main thing is to stay consistent!