Staff Features highlight the health, fitness, and wellness journeys of Western staff. This month, in honor of Multiple Sclerosis Awareness Month, we're featuring Western’s Special Projects & Programs Director, Katie Kane, and her experience living with multiple sclerosis. Keep reading to learn about MS and hear about her journey.
In early 2018, strange things began happening to my body - my legs were going numb, and I would get frequent pain running down them. Recognizing that something was not right, I talked to my primary care physician and then an orthopedic specialist to try and discover the source of the pain and numbness, thinking maybe it was related to a spinal disc injury. Unfortunately, after several completely normal x-rays, I was no closer to figuring out what was happening to my body – and my symptoms were quickly getting worse.
I was referred for an MRI and waited for my appointment to come around, but my body had other plans. After experiencing relentless numbness and pain and several episodes of feeling like my legs were on fire, I couldn’t wait any longer. After a particularly bad episode that left me laying on my office floor at Western, Mary (Western’s owner and general manager), recognizing how serious the situation was, took me to the ER where MRIs were conducted immediately. This led to an abrupt and unexpected diagnosis: multiple sclerosis.
Before we move on to the next step of the journey, let’s talk about what multiple sclerosis is and what getting an MS diagnosis means.
Multiple sclerosis is a chronic autoimmune disease that impacts the central nervous system – essentially it messes with the parts of the body that control everything we do. Despite all we do know about MS, we still are not sure exactly what causes the disease. Researchers know that something triggers the immune system to begin attacking the central nervous system and theorize that this could be types of viruses, environmental factors, or genetic factors, but research is ongoing to try and determine the exact trigger.
What we do know is that the attacks on the central nervous system result in damage to the myelin, the protective sheath that surrounds the nerve fibers, disrupting signals to and from the brain. Because there are several different types of MS and the symptoms are so varied, everyone’s experience of the disease is different, which can make it difficult to diagnose.
MS affects different people in different ways. There is a very wide range of symptoms that can differ in severity and duration – vision loss, pain, fatigue, impaired coordination, numbness, tingling, and many others. The symptoms vary which means the effectiveness of treatment vary too. Regular physical therapy or medications can usually help manage uncomfortable and painful symptoms.
Because of the unpredictable nature of the disease, so I had to see a neurologist to get a final diagnosis after receiving the initial diagnosis in the ER. After that night, I was determined to find the perfect neurologist for my needs and get this under control. On a difficult and trying journey from Green Bay to Milwaukee, to Mayo Clinic in Minnesota, and back again, I found a neurologist here in Green Bay (Dr. Todd Rave) who put together an effective treatment plan for me, which allowed me to breathe a little sigh of relief that things were going to start getting better.
As an MS patient, I have learned that my story is unique to me, and each person with MS has their own journey and has to learn to manage symptoms in ways that work for them.
The main symptoms that I manage are:
- Numbness or weakness in my legs and into my arms
- Electric-shock sensations, tingling, and pain in my legs (called “spasticity”)
- Spasticity is a condition in which there is an abnormal increase in muscle tone or stiffness of muscle, which might interfere with movement, and speech, or be associated with discomfort or pain. Spasticity is usually caused by damage to nerve pathways within the brain or spinal cord that control muscle movement.
- Tremor, lack of coordination, or unsteady gait
- Blurry and double vision
- Slurred speech and difficulty getting certain words to come out correctly
To manage and slow down the progression of my multiple sclerosis, I am on daily medication that helps with the spasticity, headaches, numbness, and weakness in my legs and arms. I also get IV treatment twice a year that I have administered at the hospital. Like many people who live with chronic illnesses, I also have taken a holistic approach to managing my health. I rely on Vitamin D supplements and chiropractic care with Club5 in Green Bay. I also get energy work with Reiki specialist Ana Kat from Rock & Body Shop in De Pere as well as massage therapy and personal training sessions. My biggest breakthrough has been with whole-body cryotherapy at Western which has really kept inflammation down in my body and is one of the biggest ways I keep my symptoms in check.
Most importantly though, none of this healing and ongoing health management would exist without the love and support from family, friends, & co-workers. Every day is another chance for discovery and to learn something that will help me to continue to live a happy and healthy life even with multiple sclerosis.
Patients with MS know that there is not one specific thing that can change our diagnosis or symptoms. It can be challenging to deal with changing symptoms, especially because not everything that we deal with as patients is visible to the human eye.
There is a quote I read that has helped me and I really believe that there is truth behind it:
“Every experience, no matter how bad it seems, holds within a blessing of some kind. The goal is to find it.” -Buddha
I have had so many blessings since I got my diagnosis in 2018 and if this didn’t happen, I would not be the person I am today. I have been blessed with so many individuals over the last 5 years that were brought into my life for a reason; I have to think that if I was not diagnosed, I would have missed out on all of them.
By raising awareness of what life is really like for someone battling with MS every single day, I hope we can instill more empathy in people and inspire the world to help find solutions to make life better for people living with multiple sclerosis as well as other disabilities and chronic illnesses.
I’ll leave you with a poem written by Kim Bayne about the battle with multiple sclerosis that helps explain how no matter what, I have the strength to overcome MS because it does not OWN me.