Recently, reality TV star, Jack Osbourne, was diagnosed with multiple sclerosis (MS) at the age of 26. This news came just a few weeks after the birth of his daughter, Pearl. MS is an autoimmune disease that basically causes the body to attack its own central nervous system. A very simplified definition is that it basically causes signals between the nerve ending and the brain to essentially short out. As in Osbourne’s case, MS is no respecter of age and in fact, is often diagnosed when people are in their 20s.
Today, I would like to share an interview with a personal friend of mine, Deana Caldwell, who’s not only surviving after diagnosis, she’s living her life on her terms!
My Interview with Deana follows below:
Darrin: In recent news we’ve learned of reality show star, Jack Osbourne’s recent diagnosis of MS. What goes through your mind when you hear news like this?
Deana: A diagnosis of Multiple Sclerosis is shocking and scary. Shocking because most persons diagnosed are between ages 20-40,which generally are years of health and prosperity, right? The frightening thing about MS, for me, was that in 1994 at age 22, the only people I knew with MS were in wheelchairs. At that time, the medications primarily only treated symptoms. However, that was the time when disease modifying medications were beginning to be released. The face of MS looks so different now.
Darrin: I think a lot of people are just shocked that he was so young. So you were 22 when you were diagnosed?
Deana: I was 22, but looking back, I can see I had been suffering from some symptoms for a couple of years.
Darrin: What symptoms did you have that cued you to something being wrong?
Deana: Because I was working out with weight bearing exercise, a full time graduate student, working, etc…, I assumed my extreme fatigue was just part of my life-style, but then the palms of my feet began tingling, as if they were asleep. This got so bad that I really couldn’t feel my feet at all. Yet, I could walk, which is kind of not safe if you can’t feel your feet, huh? It just speaks to the fact that you think you are invincible at that age. Then, my pelvis became numb. Kept ignoring it, thinking I pulled a muscle working out. The turning point was when I was driving to a mid-term exam. I was pulling off the exit and I couldn’t move my right foot from the gas pedal to the brake. I was petrified and knew something was wrong. I used my left foot to stop the car and get to the parking lot at EKU [Eastern Kentucky University].
Darrin: How has MS changed your life?
Deana: MS changes your life because at a young age, I had to learn that I was no longer the person I thought I was. I learned quickly that our society places a lot of importance on what you look like and what you can do. MS threatened both of those for me. However, getting on an injectable medication and staying on one for 18 years, I believe, has been critically important to getting to remission and staying there. Secondly, it changed my life because I have to accept my limitations and use compensatory strategies to do the things I need to do, like work full-time, care for a family, exercise, worship. My family knows when I need a nap, I need one. Extremely hot weather and humidity, melt me quickly. I just make sure I make arrangements to cool off take care of myself.
Darrin: What advice would you give someone newly diagnosed with MS?
Deana: The National MS Society says that anyone diagnosed with MS needs to choose a disease modifying medication with their doctor, get on it, and stay on it. This can mean an injection every day or a few times a week. It is an adjustment to give yourself an injection, but all the drug companies selling MS medications make sure qualified injection trainers are there with you to help you every step of the way. It gets easier with time. I have been on 3 of the 5 injectable therapies over 18 years. There are infusion therapies now as well. I have never taken those. The most important thing is to get on a therapy and stay on one. The face of MS has changed for so many since the millennia because of these disease modifying drugs.
Darrin: Obviously, there is a lot of research ongoing to find a cure for MS. Where do people go to find out more about the research and how can they support the cause?
Deana: The NMSS is one of the leading organizations supporting research in MS. They can always donate to NMSS which sponsors research for MS. MS Watch is informative also. My personal favorite is Shared Solutions website sponsored by Teva Neuroscience.
After her diagnosis, Deana began running for exercise and actually completed the Chicago Marathon in 2005. “Other than having my child at 32, this was a defining moment that MS would not define.”, she said,”It was very healing for me emotionally and helped me come to terms with my MS diagnosis” Today, Deana serves as a patient advocate. She shares her story of living well with newly diagnosed patients and encourages them to get on an injectable therapy, not necessarily the one she takes. She also encourages them to stay on it. Her neurologist pretty much sums her up best when he says ”if I could bottle you up, I’d be a millionaire.”