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Will Greene

HEROES > Will Greene

BAMS Hero,

May 2009

I was a little surprised to be asked to be highlighted as a "hero." I guess fighting through MS and overcoming its crippling effects, pain, and occasional depression to rise to a Vice President level at American Airlines qualifies in some people's minds. I am also very proud of holding together a wonderful family throughout my battle.

I'd like to stay on the hero subject a little longer because I know many of us with MS have our own personal heroes that deserve to be recognized. My most significant heroes are my family and my friends. They've stuck with me and supported me from the beginning. I must start by pointing to my wife Dianne who has hung with me and stood beside me all while being beautiful in so many ways - she attracts a horde of friends and admirers and could easily have chosen a different path. My kids (Will Jr., David and Courtney) are no less heroes as they are all on their way to their own terrific futures despite losing me from so many of the physically active roles that can come in handy as a father.

I must also mention the leaders of my company as real heroes. They stuck with me despite the many myths of how MS affects all of those afflicted. They've seen through my physical limitations to spot my talents, they've never stopped leaning on me for even more performance and more output, and they have continued to recognize and reward my performances throughout.

I am hoping that this note can be a little contribution to help a much broader group of folks who are battling this disease. I believe I can offer hope and I also believe I can provide some real information about how to improve your life with MS. I am really amazed by the lack of knowledge that exists in both patients and doctors about the help that is available. I'm sure this is largely due to the randomness of the disease and the need to treat each patient differently. So this letter is perhaps just one significant effort I can make to improve the plight of those with MS.

I'll start with my own story so that you may better appreciate how I've developed my understanding and opinion of MS. I realize there are millions of opinions about MS, many from people who are convinced they have found the cure. Having tried many of these ideas, I don't hope to find such a cure by poring through every claim on the Internet. However, I do value learning about the successes people have with overcoming the challenges of the disease. Hopefully, you'll gain that same value from my story.

I experienced my first symptoms of MS a little more than 10 years ago, and it took about 3 months to confirm I had MS. Prior to these episodes, I was one of the healthiest people I knew, and it was then that I had my first help from above. An insurance salesman convinced me to buy more disability insurance despite my belief that it would all be wasted money. Hopefully, it WILL all be wasted money and I will never have to leave the company and the job I love until I am ready for a normal retirement.

My initial symptoms were rather minor in that they didn't limit my abilities, but they just created irritating burning sensations. Those symptoms passed and I entered my denial period. During that period, my wife and I decided to have a third child. Since it took us a while to be successful having our daughter, I did in fact suffer another episode of the disease before her conception. The new episodes unfortunately were the beginning of a more serious disability affecting my legs. I went through spells where my legs suddenly wouldn't work well and I was worried about falling (and did break a shoulder on such a fall). Throughout my wife's pregnancy, I worried about being able to support yet another child. Now that my daughter is almost 9, and is such a gift to me, I know that I had even more help from above when deciding to continue trying for a third child.

Since my first few years of suffering only a minimal impact from the relapsing/remitting form of the disease, my physical condition has significantly worsened. Although multiple MRI's appeared to show little in the way of new lesions, I was clearly worsening. I lost my first "life" sport when I decided I shouldn't snow ski anymore - that was about 8 years ago. Then about 5 years ago, I gave up golf. Losing golf was very difficult for me, but I've been amazed at how many other things you can do with the newly available time. I now have much more time to spend with my family, to read books and to give the company even more as has been required from all officers and frankly all employees at American in recent years.

Important transitions occurred for me when I was passing through the "walk-with-a-cane" stage and entering the "electric scooter" stage. With each stage of my progression, I did experience depression, but each new level showed me I had no problem excelling at the things that were most important to me – and that would bring on a new hope and actually lessen some of the fear I had been living with.

This last stage was important to cover because it has played a surprisingly big part in the acceleration of my disability. I had little understanding or appreciation of the human body and of the intricate symphony of movement among muscles required to perform many of our daily activities. I now appreciate how losing the ability of one muscle involved in an activity drives several muscles to be used less and to become more disabled through atrophy. Also a factor for me, I gained about seventy pounds since the time I started using a scooter. The lack of regular walking and normal daily activity greatly impacted my ability to control my weight. More weight added to the difficulty to perform in the areas where I should still have been active. So, I was now spiraling downward and I was blaming it all on MS.

What has happened to me in the last couple of years may provide some readers of this with some hope that comes from realizing much of the affect MS has on you is in your own hands. It was not long ago when I started on my path of maximizing my own impact on lessening my disability. My first goal was to lose weight because it was clear to me that moving less weight around would be easier. However, I stalled about half-way to my goal and realized I would need to add some exercise. This was tough for me because the simplest exercises like riding exercise bikes, walking-in-water, swimming and using my stomach muscles were all virtually impossible for me. So, I started very slowly and couldn't even break a sweat at first. I've now progressed far beyond my wildest dreams and my progress has accelerated in the last 6 months. I've now lost 70 pounds, and I intend to make exercise a regular part of my life no matter how little I can do. Finally, my exercise obsession (I have been accused of being obsessive) led me to search out the help of a physical therapist – this was a help I had ignored previously because I couldn't see how to commit the extra time usually required to benefit from a therapist. My latest effort in this direction allowed me to discover a terrific therapist who was happy to build my own knowledge about how to make my existing workouts build the most important muscle groups.

Now for the next big surprise that hit me – I had no idea that MS could bring on such severe and chronic pain. I'm sure I didn't understand all of the reasons for such pain, but I must say that I now strongly believe that the rebuilding of my stomach, back and leg muscles through my workouts has lessened the strain on my back and is a significant part of my now greatly improved condition when it comes to pain.

I don't know how far this exercise regimen will bring me, but I'm not willing to limit where I can go. I even hope I may find myself back on the golf course at some point.

Now let's talk about the medicines and the help from the medical community. I've had six different neurologists along the way. Working for an airline, I started by searching out who I believed was the best available doctor in the country. So, my initial years brought me to Chicago a couple times a year. As I progressed, it became more important for me to have a local doctor. So, the rest of my experience with doctors has been quite varied and sometimes disappointing. I was discouraged by the amount of "guessing" that I observed and the seemingly frequent inability to answer my questions – as you might expect, my profession can make me a difficult patient seeking many answers and not easy to satisfy.

My latest breakthrough was only about 6 months ago when my doctor moved, and I had the opportunity to hook up with a new doctor from UT Southwestern, who is considered by many as the best MS doctor in Dallas. Many of you in Dallas already know who this is and will already know that I was very lucky to find a spot on his patient list.

Now I am no doctor, but I'm willing to give you an amateur's opinion of how many may be helped if their doctors consider some of the treatments that have helped me. Since I am not a doctor, I can't urge you enough to make sure you consult with your own doctor before you follow any of my advice.

I had previously thought that MS treatment fell into two categories: 1) Stop or limit new episodes in order to limit or prevent new disabilities and 2) help you live a better life with the symptoms caused by your existing MS. I now believe there is a third opportunity which is quite exciting to me – that opportunity is to increase the brain's ability to successfully send messages to your muscles despite the lesions and the corrupted nerve paths.

I won't talk too much about the first area of stopping/limiting new episodes. This is perhaps the most widely known area and it holds much promise. The re-introduction of Tysabri is a particularly encouraging development and gives me hope that we may well dramatically limit this disease in the future.

The second target area for medication, or living with your symptoms, is perhaps the least understood piece of battling MS. Part of that is driven by the mere fact that MS affects each person differently, and there is not a universal solution for all. I will say that my new doctor is brilliant and has introduced me to medical help I was not aware of. Three of the medicines that have been very effective for me are Provigil (aimed at extending your daily wakefulness), Clonazapam (aimed at taming the spasms that were plaguing my legs late in the day) and Dexamethazone (a new medicine for me that is addressing my pain with much less steroid since it appears to combat inflammation particularly well). Many folks with MS don't appear to be aware that these are medicines that they may wish to discuss with their doctors.

Now I'll discuss what I believe is a largely unknown area of improving the actual ability for your brain to send signals to your muscles to move. My new prescription for this is called 4-Aminopyridine (better known as 4AP). I was introduced to this medicine during my effort to improve the impact of my workout regimen. I was very quickly able to measure the difference in my workout intensity and the work accomplished in my workouts as my workout machines provide those measurements – it was a dramatic improvement for me.

For all of these medicines, please only use my information to spur a constructive conversation with your doctor.

Separate from medicines, I now have a device that will locally fire muscles with electric current to lift my toes when needed to help me complete a normal stride. This device essentially bypasses the problems that I have in sending a message from my brain. It's a tremendous device for me as I hadn't realized how much of my difficulty in walking was due to my inability to lift my toes and the resulting need to drag my toes (and my whole leg) across the ground to complete a step. The idea of locally firing muscles sure looks promising for folks like me that already have disabilities which likely cannot be fully eliminated or overcome. If you have the same problem, I suggest you consult your doctor or your physical therapist about such a device.

I'll end by telling you I'm more excited and hopeful now than I have been for years. Whether or not these medicines and therapies work for you, I definitely urge you to take a more active role in working with your doctor to jointly establish a treatment plan that will work best for you. Many neurologists do not focus solely on MS and can actually improve the regimen that works best for you if you take a more active role with him/her.

Well, I've made my best effort to help others with MS. Because MS is so random, I don't know these medicines or therapies are right for you, but I do believe that a more knowledgeable group of patients will be in a much better position to improve their own ultimate situation. I wish you all well and hope I do help you in some way.