Freelancer AND Caregiver – Life With Multiple Sclerosis

March is National Multiple Sclerosis Education & Awareness Month. My wife, Angie, was diagnosed with Relapsing/Remitting Multiple Sclerosis in July 1997 (attached below is an article written by my wife on what Multiple Sclerosis is). Since that time, I have been her caregiver as well as her husband. Over the years this has required us to adjust our lives to various stages of the disease. At this moment in our lives, Angie uses a walker most of the time and a wheelchair at times to get around. Currently, this means my daughters and I do a major portion of the driving, housework, and cooking.When my daughters head off to college in a couple years, this will mean even more responsibilities for me.

Tabletop games have become of greater interest and significance to us as her mobility has decreased. Board and card games are something we can enjoy as a couple and with our family and friends. Sitting around a table enjoying a game and conversations fits well within the boundaries of Angie’s MS symptoms. This is also where freelancing has worked well for us as a couple. I have desired to be more involved in the hobby I love so much but struggled to find the right niche. I do enjoy working conventions but I cannot be constantly traveling, so I have had to limit myself to one event a year so far. Freelance proofreading and editing have proven to be a perfect fit for me. I can do the work in my home office or on my laptop at a table near my wife. Freelancing has allowed me to become significantly involved in a hobby I love without impacting my caregiver responsibilities or time with my wife.

For the past few years, my wife has submitted an Op-Ed article regarding MS Awareness to our local newspapers. To help you understand more about my life as a caregiver of a wife with Multiple Sclerosis, I thought it best if you heard directly from my wife who lives with MS every day.

MS Awareness and Education Month – March 2015
by Angie Knight
“Why do you need a cane? Did you hurt yourself?” This question used to be asked of me quite frequently, particularly when I was visiting my daughters’ school. Our twins were in preschool when I began using the cane regularly, and I had many chats with curious students over the following seven years. The questions changed, though, as time trudged on. For the past two years, young questioners have been a little more confused, “What is that thing with wheels, and what is it for?”

Depending on the audience, my response shares some version of this information:
a. A cane (or walker) helps me so that I don’t fall. (the concrete/carpet/pavement isn’t very tasty.)
b. On some days, my legs don’t like doing what my mind wants them to do. This helps them.
c. This thing called “MS” fights and makes my body uncooperative. I’m not going to let it win.

For those who are really interested, I give a little lesson about what MS is. Multiple Sclerosis actually means “Many Scars,” and these scars are in the nervous system. The brain is our biggest bundle of nerves, and that’s where lots of these scars can be seen by machines (MRI in particular). What makes the scars form, you ask? This is where things get tricky. Our bodies do a fantastic job fighting nasty things that try to invade. The immune system has armies of helpful white blood cells that attack germs, keeping the body healthy. So what’s the problem? MS, you see, tells those cells to fight against myelin, the coating of the nerves (and an important part of brain tissue). So when white cells attack this coating, they leave scars. Each part of the brain is responsible for doing very specific jobs, so you can imagine how little, unwanted bits of scar tissue can affect the brain, reaching into many parts of life.

March is MS Awareness Month, so this is a good time for somebody like me to share more than just an elementary-level lesson about the science of multiple sclerosis. Currently, the National Institute of Health estimates that between 250,000 and 350,000 people in the United States have MS, and about 200 new cases are diagnosed each week. So I am not alone; in fact, you likely have a neighbor who has MS. This is what is often thought of as an “invisible” disability, as many of the symptoms simply cannot be seen from the outside. I use a walker now, but I didn’t begin using a cane until seven years after this journey began. Even though symptoms are not easily visible, they are very real. As Awareness month continues, here are a few MS facts to help you understand the disease*:

• MS is not contagious.
• MS is usually diagnosed between ages 20 and 40.
• Among young adults, it is the most common illness of the Central Nervous System.
• MS is not hereditary, but there can be genetic susceptibilities.
• MS does not have a significant effect on life span.
• Fatigue is the most common symptom of MS. Others include loss of coordination, vision problems, and memory issues.
• MS is a progressive disease, and there is no cure. But there are therapies that can greatly reduce disease progression.
• Current research is leading to new possibilities for more effective treatment

March is a month when we can focus on awareness of those in our community who face disabilities, some visible and some not. Let’s use that awareness to encourage and spread kindness to our neighbors.

*sources: Multiple Sclerosis Foundation www.msfocus.org, National Institute of Health http://www.ninds.nih.gov/disorders/multiple_sclerosis/multiple_sclerosis.htm, and National MS Society, www.nmss.org .

If you would like further information about Multiple Sclerosis, check out my wife’s blog, Invisible Issues, and these supporting not-for-profit organizations. If you have any questions about life with Multiple Sclerosis or what it is like to be a caregiver, Angie and I would love to chat with you. Feel free to leave a comment below, use the Contact link above, or contact me on Facebook or Twitter.