Better Late Than Never

This is my presentation for Biogen Idec’s MS & Relationships teleconference. The audience is typically MS patients considering Tysabri. Three patients tell their stories and answer monitored questions. There is always a medical professional on the call.

Just over two years ago in the Spring of 2006, I was training for the MS 150, a fundraising bike ride in Salt Lake. The owner of my company has MS and inspired me to raise money for the NMSS. He has been in wheelchair for more than 20 years and I was going to ride for him. He was my face of MS. During that time, I had just returned from a trip to Germany and what I thought was a little jet lag turned into a lot of vertigo. I had experienced vertigo before and I figured it was just some type of ear infection. My doctor thought the same thing. As the weeks progressed, I couldn’t walk a straight line let alone ride a bike. Two months later, I still felt like I was stumbling out of a bar whenever I stood up and went back to the doctor In the beginning of July, I had missed the MS ride, still could not get on my bike and was diagnosed with MS.

The diagnosis was more traumatic than the disease. I didn’t have enough information to process what this meant. I didn’t have enough information to take action. I only knew enough to be scared. At first all I thought about was that I might not be able to ski or hike or do any of the things that my was such a huge part of my marriage. One of the first dates I went on with my husband was a hiking trip! I was so worried about how MS would change things not only for me but for us and our relationship. I knew that for as long as I stayed worried and confused, my husband and daughter would be even more worried and confused. That was motivation for me to take charge.

I started MS therapy almost immediately and started researching to find my path to wellness. I looked into different diets, exercise plans and alternative therapies and with input from other MS patients, my neurologist and family I came up with a plan.

The first thing I learned about MS is that I needed to form a team. I need a strong team to fight MS. My team starts with my husband and 13 year old daughter. They are the heart and soul of my team. Next, my parents and sister and other friends and family. My employers and colleagues are part of the team. I also have yoga teachers and sometimes personal trainers on the team. The medical part of my team consists of an amazing family doctor, a neurologist, specializing in MS that is the best in the state if not in the country and a gynecologist that I trust. The great thing about my family doctor is that he takes care of me and my MS. We do routine blood work to be sure everything is going ok. We talk about how I feel physically and emotionally as this disease or any chronic disease can really throw you for a loop. My family practitioner or internist is just as important as my neurologist. I See him regularly. I Know that having MS does not preclude me from Cancer, Heart Disease or a million other ailments. I’ve Become vigilant about my health. It is my responsibility to be the boss of my health. I have to lead my team.

During the first six months of my diagnosis, I went from wheelchair thoughts to fighting for my life. I knew I wasn’t going to die but I was going to fight for the future I had planned, for the lifestyle that I dreamed about. I changed my diet, my sleep habits and the way I respond to stress. The side effects from the interferons made it difficult to feel great but I knew I was making progress.

After a month of injections three times a week, I was so sick every day after that I could barely work. My flu like symptoms were more like malaria like symptoms. The injections made me sicker than the MS. I was upside down. I did everything I could to tolerate the side effects and the injections but nothing was working.

I saw my 2nd and current neurologist in September of 2006 and he recommended switching to a weekly injection instead of three times a week. He also told me that MS was really active in my body. This was demonstrated in my Spinal Tap results and also when I stood up and closed my eyes during my exam. I would have hit the floor if my husband wasn’t there to catch me

In switching to interferons only once a week, I was only sick once a week. Even this was too much.

By April of 2007, I knew something had to change. I was showing up for work the day after my injections but not very productive. I felt horrible. The good news was that After almost a year I had only one minor relapse and another course of IV steroids and my MRIs hadn’t changed – there was no progress. Disease is one of the few places where not progressing is a good thing. but I knew I could not continue on missing a day a week if there was another option. I wanted Tysabri.

At first, my family didn’t want me to try Tysabri. They were scared. They were the scared of the same thing you might be scared of, PML. I was scared of PML too, and then I learned the facts and measured pros and cons.

I was under the impression that Tysabri was used only when all else failed and then found out that an MS Patient can take Tysabri before they try everything else. I also initially thought that I would take Tysabri when things got bad, and then I realized that by not waiting, I might not “get bad”.

I was really surprised to learn that Tysabri was used for not only patients that were not responding to their current therapy but also for patients like me who couldn’t tolerate other MS therapies. I realized that all drugs and MS Therapies have risks, including aspirin. But knowing that Tysabri is given at the Doctors office or a designated “Touch Center” made me feel better because I would be so closely monitored during the infusion.

In July 2007, one year after my diagnosis, I had my first Tysabri infusion. Today, sixteen infusions later, I feel better than I have in ten years. I still have occasional MS symptoms but my mind is clear and focused, my body is strong and I am ready to fight.

Before my first infusion, I had to stop my injections for a month in what’s called a wash out period. What an amazing month! I never realized how sick I really felt until interferons were out of my system

After my first Tysabri infusion, the daily tingling in my face and hands went away and my energy level was more stable. I wasn’t even expecting improvement, I was looking for the one medication that will slow or stop my MS progression combined with my diet, exercise and attitude.

Choosing an MS therapy is deeply personal and I am not suggesting that Tysabri or any other MS therapy is right for you. It was so important to me to make decisions based on facts and not on fear. I did a lot of research. I’ve read websites and blogs and labels and even clinical studies, it wasn’t the most entertaining reading but it was necessary for me to learn as much as possible to make my decision. Through this information, I was able to make informed decisions about my healthcare.

My husband and I have grown so much closer over the past two years since my diagnosis. It has taken some time to find the balance. There are times when I don’t want to tell him if I don’t feel well. There are times when I experience fatigue and I worry that he will think I am being lazy. As cliché as this may sound, the one thing that always gets us through is communication. I have learned to tell him when I am concerned about something or not feeling well. I often bring him to appointments with my neurologist so he can ask questions and see what’s going on. While it is sometimes hard for me to admit weakness, the truth is that I need his help as much as he needs to help. He might help by cleaning the kitchen or taking our daughter out for dinner so I can have some time to myself or his help may be as simple as calling me and telling me to “take it easy” or to remind me to rest if I am having a hectic week. Helping may just be asking “what can I do?”

As much as I want to be strong and independent, I rely on him to take care of me and to be there for me. Sometimes I think strength comes from admitting weakness.

This past spring, two years after my diagnosis, I finally got to participate in an MS ride and finished 100km with my family on Martha’s Vineyard. I recently accepted a promotion at work and am working on several projects that I would not have the energy for without Tysabri. While my family was initially scared, the improvement that they have seen in me has eliminated their fear.

Instead of being scared about what MS means to my future, I am really excited about the great things that I will experience with my friends and family.


One response to “Better Late Than Never

  1. Ok where are my tissue……..

    Love you sis

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