I was 28 when I had my first attack. My symptoms were blinding headaches and extreme eye pain followed by vision loss. Honestly I thought I had a brain tumor so the diagnosis of MS was a relief. They gave me a 5-day IV infusion of solumedrol and aside from being very bloated, I felt fine. They first few years were spent in denial. I refused to take the medication prescribed or any help. I didn’t want to join any groups or even tell people that I had MS. I remember this man I dated briefly who told me I could never procreate because I was sick. That really hurt. I began researching like crazy about my disease. Which led to complete panic. All the questions and feelings came pouring in…Am I going to end up in a wheelchair? Could I live like that? Will I forget everything? Am I going to go blind? Who’s going to love me? How can I have children?
Finally came acceptance. Getting out of panic mode and taking a deep breath to deal with what was going on.
My name is Laura Lindemann. I am a 44-year-old woman living and thriving with relapsing and remitting multiple sclerosis. MS is a neurological disorder that attacks your central nervous system, i.e.: your brain, optical nerves, and spinal cord. It can affect memory, balance, vision, muscle control and other related functions of your CNS. My greatest blessing I have is my family. I found true love with my wonderful husband Patrick of 13 years. He has taken such good care of me. His sense of humor and undying love has been instrumental in my positivity, an important key in dealing with my disease. He has even had to play nurse and give me weekly shots for two years. He helps me all the time when I am tired and can’t clean the kitchen or finish the laundry. He really is always there for me and I can’t thank him enough. We have two amazing kids. Patrick James is 12 and Christopher is 10. I actually had a terrible attack when I was pregnant with Chris. It was the worst attack I ever had. My left side went totally numb. I fell and had to go to the hospital. I had to have another 5-day IV of solumedrol. After Christopher was born I started to take my disease very seriously. As fate would have it, I was given the opportunity to see one of the leading neurologist in the world, Dr. Dusan Stefoski. I am currently on a monthly infusion of Tysabri. This medication is keeping my MS at bay. I have not had an attack for 10 years. I sit in an infusion room with 10 other patients, from all walks of life.
We all have one thing in common, MS. However, it affects everyone differently. No two patients are alike. If you can imagine a cable with holes in it, trying to protect its wire, that’s like our nerves wrapped in the myelin sheath. If the wires or “nerves” are exposed, it creates a less fluid connection. The wires short circuit or misfire. In my case, I drop things a lot and my words don’t come easily. It is very frustrating at times not to remember words or keep up with my thoughts. But I also know that I am one of the lucky ones. I am blessed that I can walk and talk, to be independent and able to work. My biggest issue actually is that I look so good people don’t know I’m sick. All of my symptoms are internal, unless you look are listen very carefully you would have no idea of the struggle. I have a slight drag foot, I stutter and struggle for words at times, my memory is not the greatest and I have chronic fatigue. I need to stay home a lot. Sometimes people don’t understand that. I feel like I have to explain myself a lot, or warn people I have MS. If anything It gives me a sense of compassion for other people. You never know what someone else is going through. It has given me a greater sense of purpose.
To share my story and try to help others. I know the struggle is real. I know how it feels. It brought me to my job and the possibilities are endless.
Things come full circle, as professionally I am a patient advocate and home care coordinator specializing in infusions and injection for neurological disorders. My patients I have met along the way are incredibly brave and super positive. I am also on a waiting list to become a peer speaker for Biogen, the manufacturer of Tysabri. I feel like the universe has opened up to me and I found what I am supposed to do. I have never embraced my MS as I do now. I would love the opportunity to speak to other patients and give them some level of comfort.
My journey with MS has just begun.