Fighting With Love
Hello everyone! I am Maojun Li, an ALS patient from China. First, I would like to acknowledge the great support from ALS Worldwide and my wardmate, Shuzhi Zhang, which enabled me to access the up-to-date information of the newest medications and treatment to ALS in the world. Here, I am glad to share my experience fighting against ALS, and hope that I can encourage others.
Diagnosed with ALS
On May 8th in 2013, a day I will never forget, my life was changed. My colleague joked to me, “Why does the muscle on your arm twitch like that? Couldn’t be Parkinson’s Disease, could it?” Later, I went to the hospital with my wife and had an MRI of my cervical spine. The results came back normal. However, when the doctor sighed deeply while looking at my EMG, I knew something bad had happened. The EMG showed motor neuron lesions. At the time, I didn’t realize just how serious these results were. My neurologist diagnosed me with motor neuron disease and told me that I had the same disease as Stephen Hawking. I cannot remember how I returned home. After searching on the internet, I learned that ALS is one of the five most terminal illnesses in the world. As you much expect, I felt so hopeless and was prostrate with grief. Fortunately, my wife kept soothing and encouraging me. It is her company and consideration that has encouraged me on the fight against ALS.
Confront ALS, Never Give Up
“Life is equal to everyone. Time passes no matter whether you feel happy or grouchy. Life has nothing to do with length, but depth.” This is what my wife always says to me.
After being diagnosis, I was depressed. I used to cry: “Why am I so unlucky? I am only 32!” It is at that time that my wife said to me, “Let’s have a baby. We three as a family will enjoy a peaceful life. Maybe God will be moved and present us with a miracle.” Having listened to her words, I was relieved. Life could be happy. Some cancer patients still live many years. As long as I am determined to fight against the disease, I believe that I will live longer. Following a month of depression after my diagnosis, I restored my faith in life.
During this period, I lived a normal life. In my spare time, I went to the forum founded by fellow ALS sufferers in China and joined online social groups to learn more about this disease and to try to face it with calmness. Soon after, my wife was pregnant, which encouraged me more. On June 18th, 2014, I became a father. The arrival of my son largely made me forgot about the sadness from the disease.
Also during this period, my symptoms worsened. My hands weakened more because those muscles atrophied. In September 2014, I went to Dr. Li at Peking Union Medical College Hospital for further treatment but found no relief or improvement. After returning from Beijing, I tried traditional Chinese medicines, Mongolian medicines, Tibetan medicines, Massage, and acupuncture, but there was no significant effect.
In 2015, my wife got to know Shuzhi Zhang from an online social group of fellow ALS patients. I also knew from him an organization called ALS Worldwide, where we learned of a medication called Nuedexta. My difficulty swallowing and choking were alleviated after I tried this medication. Because of this organization, my view was broadened, and I am able to access the latest news about ALS from around the world. The help from ALS Worldwide and the persistence of my family further strengthen my determination and courage to live. My family and friends need me.
Helping My Wardmates And Doing What I Can Do
After my condition was improved, my wife, Shuzhi Zhang and I formed a WeChat group in order to help Chinese patients access the services of ALS Worldwide by offering free translation for registration forms and Skype calls. In this group, I shared my experiences and ALS information with other ALS patients. We also popularized ALS Worldwide among other patients to help them access news of new technology and medications in foreign countries, which might help strengthen their hope in life.
Now, even though my symptoms keep worsening, I am optimistic. My wardmates say that my optimistic attitude and patient activism have also brought positive energy to their lives. Illness is not horrible, but the loss of the courage to fight is. I really hope that all ALS patients in the world will be positive with their lives, and that scientists will someday invent more effective ALS medications to fight against this disease.
By Maojun Li, China