Multiple Sclerosis Centers of Excellence
Finding the Strength to Fight Back
Kenneth Johnson -- Los Angles, CA
I am a US Army disabled Veteran who deployed during Operation Desert Shield/Storm. I was honorably discharged after my 6-year enlistment and later pursued a 17-year career in law enforcement. I was employed by a Sheriff’s Department, Police Department, and later, a federal agency as a US Special Agent. I’ve traveled throughout the US, as well as various overseas locations, and had some of the best experiences of my life. I was satisfied with my accomplishments.
All was going well until I started having difficulty recalling memories, names, appointments, and dates. Sometimes my fatigue was so intense that it felt as if I hadn’t slept in over 72 hours. I experienced indescribable body pain and spasms wildly traveling throughout my body as I lay still in bed. I had blurred/double vision and was seeing things in my peripheral vision that were not there. I felt anxious when planning to attend gatherings because I was unsure how I’d feel that day. The list of symptoms seemed never-ending, and that’s when I realized something is happening with my body.
In the summer of 2014, after months of medical testing, my VA neurologist Dr. Robert Baumhefner delivered the news that I had MS, and there was no cure. Additionally, I was to begin my disease modifying drugs in 30 days. I left my appointment, drove home, and searched the web for information about the disease. I experienced the emotional effects of being diagnosed with a chronic illness - denial, anger, sadness. I rapidly began to lose weight along with muscle mass. It was time to make a decision, fight or fall victim to MS.
The first order of business was to share my diagnosis with family and friends. I quickly learned I could not fight this disease alone and shifted from being an independent Veteran to a Veteran who needs support. Next, I needed to integrate myself into the MS community by attending self-help group meetings, attending seminars related to different medications, registering with the National MS Society, and connecting with others who have MS. I also needed to construct a healthy diet and exercise plan in an effort to counter/delay disease progression. Lastly, I needed to come to terms with my diagnosis in order to move beyond the diagnosis.
Since my diagnosis, I have accomplished these goals, and so much more. I connected with many others in various stages of MS; some mobile like me, some using devices to assist with walking, and others who are wheelchair-bound. These individuals continuously fuel my motivation to fight and to continue to do so. I opened up, sharing my diagnosis with any and everyone in an effort to help raise MS awareness. The more I share about my diagnosis, the more liberated I feel.
I volunteer with the National MS Society in support of the search for a cure through fundraising or donating my time. I eat healthy foods and exercise daily to keep my body and mind in peak condition. I try to consume raw fruits and vegetables daily along with plenty of fluids. My daily exercise routine consists of weight lifting and cardio, which helps with spasticity, muscle atrophy, and fatigue.
I’ve learned to become patient with myself and to take each day as it comes, make adjustments, and move forward. One of my biggest struggles living with MS is people’s lack of understanding. Then again, how can I expect others to understand when I’m still learning about MS? I’ve learned that patience and forgiving myself are crucial, and have been very effective as I’ve put them into practice.
Now, 2½ years since my diagnosis, I am stronger due to my exercise and diet. I feel mentally and physically sound, as much as a person with MS can be. I am more educated about MS and how to identify signs and symptoms of potential exacerbations, and able to fight through my fatigue. There are times when I do all of the above and I’m still symptomatic. This is when I listen to my body and rest.
My hopes are that someday a cure for MS will be found, and we are able to have a life free from the symptoms and disability of MS. In the meantime, MS should know we stand firm in our will to fight, and we are determined to win. We all possess the ability to fight; it’s up to the individual to decide when he or she will surrender. MS is not the end for me nor should you allow MS to be the end for you.
(from spring 2017 newsletter)