My Story with ADEM

My name is Darren Clayton. I am 31 years old and live in Stillwater, Oklahoma. I would like to tell my story about being diagnosed with Acute Disseminated Encephalomyelitis.

On the evening of November 2, 2014, I was having horrible pain in my lower back and felt like there were ants crawling on the inside of my skin from my waist to my neck. I drove to the emergency room and while there, they started doing lab work and running tests to see what might be wrong. Before I go any further I will say that I had been sick with flu-like symptoms for 2-3 weeks prior to this. I had a fecal test and was aware that I had gotten Campylobacter Jejuni and Cryptosporidium and was given antibiotics. I had felt like I was getting somewhat better when this hit me all of a sudden.

While waiting for results from the lab work at the emergency room, a nurse came in and asked me to give a urine sample. As hard as I tried, I could not urinate. While waiting in the emergency room, I lost all feeling from my waist down. The nurse came back in every few minutes and started scolding me about not being able to urinate, although there was no way I could.

The doctor and nurse advised me that I probably just had a slipped disk and told me to go home and go see my family doctor the next day. I called my wife to come pick me up and the nurse put me in a wheelchair in the lobby while I waited for my wife. I made it home and literally crawled from the vehicle inside the house and up the stairs to my bedroom. I laid there for about 30 minutes and had to pee so bad that I felt like I was going to explode. After about 45 minutes my wife called the ER and spoke with the nurse who had ‘taken care’ of me. The nurse asked me if I had taken the medicine that they had given me for anxiety and told me that I just needed to calm down. After my wife had spoken with her and got pretty agitated, I waited a few more minutes to see if I could pee and realized I couldn’t.  With so much pain in my back and feeling like my bladder was going to explode, my wife called 911 and had me transported back to the ER where they used a catheter to empty my bladder which was 4 times as full as normal.

They then transported me to a hospital in Oklahoma City, OK where I was met by a group of doctors, nurses and neurologists. They immediately did a spinal tap and the next day they told me that I had Transverse Myelitis. They first thought that I had Guillain-Barré Syndrome and started treating me for that but after doing an MRI they had concluded that I had Acute Disseminated Encephalomyelitis. They moved me to ICU and I was told they would keep me there until they were sure that the paralysis would not move up above my lungs and they would have to put me on a ventilator. While in the ICU, a team of neurologists came in and were discussing my condition, as they said that it was so rare and had never seen a case like it, and were trying to learn from it and figure out what could be done. After about 5 days, I was finally able to move my left big toe. Within two days they had moved me to a regular room and started taking the proper steps to admit me into Jim Thorpe Rehabilitation Hospital (to whom I give a lot of credit to why I am walking today). I was moved there and started inpatient rehabilitation. I had neurologists and doctors coming in explaining what this disease was, the chances of coming back from it and how difficult it would be. I would say that this was a miserable time and I was down in the dumps, but that came later. I started out doing therapy twice a day, just trying to learn to walk again. I had lost over 20 pounds and was so weak it was pitiful. A doctor had come in and told me that I may never walk again and told me that my chances of walking again were about 33%. I then said that there was no way I was going to be in a wheelchair for the rest of my life. At the time my son was 6 years old. I couldn’t imagine not being able to ride bikes with him, play with him outside and live a life that was not somewhat normal. I prayed to God that he would help me walk again. “If nothing else comes back, even if I have to use a catheter or have other life changing problems, I HAVE to walk again” was my prayer.

I was so determined and motivated to walk that I worked so hard every time I had therapy and between therapy while lying in the hospital bed I was doing something to try and strengthen my legs. At that rehab center I was assigned a therapist who worked with me every day and gave me motivation and kept my spirits up when they seemed to get down. They had a type of robot-machine they put me in which helped train my muscles to walk normal again. I will always remember the first time that I was able to walk about 200 feet around a room without any help and it was one of the happiest times of my life. After about 2 weeks in rehab (almost a month after my initial paralysis), I was released and was able to go home and start outpatient rehab. As soon as I got home I got in touch with a personal trainer that I had used before and started back on full body workouts and worked extremely hard to gain muscle back and get back to somewhat close to how I was before. While being sick, I had lost over 20 pounds and lost about 75% of my muscle mass. (Before I got sick I was bench-pressing almost 300 pounds and when I got out of rehab I could barely bench 85 pounds). I continued to work out daily.

Then came the time when depression kicked in and I felt like I was going crazy. While in the hospital they had put me on medicines for depression along with all the pain pills and other drugs to help me recover. One night I was so stressed and feeling hopeless that I flushed all of my pills down the toilet (pain pills, depression meds, anxiety meds). I was also told (and experienced) that I might suffer some ED (erectile dysfunction) from this which I have to come extent.

To conclude, I want to say that this happening to me was one of the best things that has ever happened to me. I was always a great father to my son but I believe that this brought me back down to earth, made me realize what was important in my life, made me see who was there for me and who would stick by me, who my real friends are and how much I could really handle.

In all of this I know I couldn’t have done it without my wife, God and the support and prayers of my loved ones and especially the faith I had and have in God. Every day I struggle with things from this horrible disease but I know that I can overcome all of these things with faith in God and support from my wife and family. If anyone encountering this has any questions or needs any support don’t hesitate to contact me at my email or phone number.

God Bless you all,
Darren L Clayton