Living with Devic’s Disease for the Past Three Years

In Sept of 2012 I was diagnosed with Neuromyelitis Optica aka Devic’s Disease, after losing sensations in my legs and spending a few days in the hospital. NMO is a autoimmune disease similar to Multiple Sclerosis, however NMO is a completely different condition that needs to be treated differently than MS. If NMO goes untreated, one can lose their vision and the loss of their legs.

I remember sitting in the hospital three years ago with my wife when the nurse came in to hand me a few pamphlets about NMO. One of the pamphlets was about living with blindness. Since I went blind in my left eye earlier in the year, the thought of it returning and taking my entire vision scared the hell out of me. At the time, I felt like my whole life was over with all of my hopes and dreams crushed.  I thought I’d never be able to live a normal life and would end in a nursing home blind and in a wheel chair. I certainly didn’t need a nurse handing me a pamphlet about blindness to cheer me up. Fortunately, I had the love of my wife and family to keep my spirits up.

My wife and I left the hospital and decided to take it one day at a time. At times I think it was harder on her than it was on me. I never took time of work and continued to live my life as if I didn’t have a disease at all. I received proper treatment in the coming weeks with a dose of Rituxinab chemotherapy. Then every few months I would go to the hospital and sit in a bed while the IV was injecting the medicine into my body. It’s not any fun, but it beats the hell out of the alternative.

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During the early days when I was dealing with my disease, I rarely read or googled stories about NMO because everything I read were horror stories from people who have been diagnosed with it. My wife would tell me how they were in chronic pain or unable to walk around. I already felt bad enough and didn’t need to become more depressed about my future so, I just kept living my life as best as I could.

So three years later, how am I doing? Actually, I’m doing great! I feel well, I haven’t had any real serious attack since my initial attack three years ago, and my vision in my left eye has come back to almost where it was before I even had an attack. In fact, last year when I went to get my driver’s license, I had to get my eyes checked during the exam. I closed my right eye and read the lines with my left eye to where the examiner didn’t see anything wrong with my vision. With contacts, I have 20-10 vision in my right eye and 20-30 with my left. I absolutely feel that my vision in my left eye continues to get better.

You may think that the silver lining of my disease is that I take better care of my health where I watch what I eat and exercise more. Well, I do try to do those things, but the real silver lining is my golf game. My golf game has dramatically improved even though I only play nine holes a week. Since my legs always feel tight, it helps me keep my body still in my swing making me hit the ball really straight. I have improved so much over the past few years, it has taken about 6-8 strokes off my handicap. In fact this year alone, I have scored numerous birdies, and four eagles with one of them being a hole in one.

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This is the ball in the hole on the third hole of Stonelick Creek Golf Course in Batavia, OH in July of this year.

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Here is a shot of me in total shock on the tee box after I just shot the hole in one. I hit my eight iron about 160 yards to the pin. The ball hit about six feet from the pin and dropped in the cup. At first I didn’t know what happened to the ball, then my brother Steve told me in went in the hole. I kept searching around the green to see if I could see a ball, but I couldn’t. It was then I realized the improbable. A few days later, I calculated how long it would take me to get another hole in one my life with as much golf as I play (nine holes a week for 22 weeks) and it will be another 212 years before I get my next hole in one.

Also over the past three years, I’ve been available to help my wife with her business repairing furniture she buys and going to antique shows together. In many ways it has made us closer as we appreciate each others company more and not take each other for granted. We go to numerous antique shows during the year with one of the biggest in Springfield, OH. It’s a huge show with 3000 dealers and we’ll end up walking around for almost eight hours during the day. Many times she poops out before I do.

I write this post for one reason. I want anyone who has recently been diagnosed with NMO that happens to come across this blog from a google search to know that everything will be alright. There will be challenges from time to time and you may have to fight with your insurance company to pay for the treatment, but as long as you find a qualified doctor who specialize in NMO, your chances of living a normal productive life is very good. In fact, the last time I saw my doctor in Columbus, OH, she told me that she firmly believes that there will be a cure for NMO someday soon. I certainly hope so, but I’m not going to wait for a cure for me to start living life again. I simply haven’t stopped.

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20 Replies to “Living with Devic’s Disease for the Past Three Years”

  1. Glad to hear you are doing well. Living your life one day at a time is great advise for everyone. Thanks I needed to hear that today!

  2. Great post Mike. Thank you for making this story available to others suffering from this disease. I hope someone stumbles on it and finds the inspiration they need to get out of bed the next day.

    -Shawn

  3. Newly diagnosed and sitting here in the hospital waiting for these steroids to work. Desperately needed a positive story..so glad I stumbled upon yours!

  4. This Friday at 4pm, a blood test posted to an online portal says I have NMO. I have only Google this weekend to guide me until I can talk to a doctor. THANK YOU for the hope with this story. I certainly need it!

  5. Reading this has inspired me. I was diagnosed with nmo 2 years ago and I’m legally blind in both eyes. I don’t let it stop me though I still try and do what I can. I really hope your doctor is right about a cure. I get rituximab every 3 months. It seems to help a little. I’m glad to hear that you are pretty much back to normal. Have a wonderful fulfilling life.

  6. I have just been diagnosed with Devic’s this afternoon, and just wanted to say your post has had the attended effect. And has made me feel a lot better. Thank you.

  7. Hi there,
    My husband was diagnosed with NMO in March 2017. It took him 4 months to recover, he got most of his vision back and was fine until last week. He started dragging his leg, and had to go in for another 3 rounds of steroids. The Dr said it’s bc he works in the sun and worked an 18 hour shift. He is an electrical lineman for the electric company in Boston, so he works a ton of OT. The sun is his enemy this summer. It’s crazy to read about you fighting with the insurance company, that’s all we do. They denied his prescription for a cooling vest which he needs for work, it’s very frustrating. He has been looking to connect with someone else who has the disease, pref the same sex. It seems more woman have the disease than men. We feel like the Drs really don’t tell us much, just that the Rituxan is supposed to be bullet proof and infusions are to be done every 6 months for the rest of his life. He is now out of work on disability and thinking after 17 years of being a lineman he may have to get a different job within the company. Anyway, I just wanted to say thank you for posting. You have a great attitude and it’s nice to read about how well you are doing. Thanks for the positive vibes, we needed this!
    Angela ~

    1. Since your husband has just had his first attack, he’s going through the worst of the disease. Once his body starts healing, he should recover all of his strength. It’s been five years since my attack and I haven’t lost a step. I even built a shed in the hot sun last summer. Once his body recovers, he may be able to go back to line work, if that is something he would like to do. I’m lucky that I’m a sales rep because I get to sit down and drive all day, but I also get out and stretch my legs when I get to my next stop. I know when I drive straight for more than two hours, it really bothers my legs, which is why I stop at a lot of rest areas.

      If your husband wants to connect with me, he can find me on Facebook. I’m Mike Flaim in Milford Ohio so I’m easy to find.

      Wish the best of luck with your sitiation. It gets better soon.

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