Those of us who are coping with multiple myeloma and those who help care for us know there are no sure things when it comes to fighting this dreadful disease. There are good days and not so good days, some treatment and drugs that work ? and some that don?t. Often, there seems to be more to cope with than most people will ever understand. Thus, when someone comes along and suggests that we need to add even more stress and physical exertion to our already difficult daily routines, it is normally not well received. But, not always.
In the August 2000 issue of Myeloma Today, I wrote about my positive experiences with supervised physical therapy, and especially with a revolutionary program called MedX Lumbar Extension Machine. The MedX is designed to isolate the spine so that the machine can work on strengthening the back muscles and nerve endings to relieve the spine. For me, this was critical in shoring up the three spinal fractures caused by myeloma. The program worked for me and it has worked for others, but that?s not the end of the story.
As a result of the article I wrote on my MedX experience, I received more than 25 phone calls and e-mails asking for more information. I was pleased to have gotten such interest. It made me feel as though my experiences might prove helpful to others.
Thomas G. Montebell, the owner and general manager of the rehabilitation and fitness center where I do my training, the National Fitness Institute in Rockville, Maryland, agrees. ?Most people have not had a positive experience with exercise,? he says. ?The hardest part for most patients is making it beyond the first two or three weeks. It?s not like taking a Tylenol for a headache, there?s going to be some discomfort.?
But getting someone who is already in pain and feeling poorly besides to start exercising on a regular basis is not easy. And, I found out what happens when things go well ? and when they don?t. There are no sure things in dealing with myeloma.
Benefitting from a physical training routine is not easy; it takes time.
I began my physical conditioning a year and a half ago on a twice a week schedule. My Exer-Med workouts included the MedX, limited cardiovascular work, a few body stretches, and gradually some weight-resistance exercise. When I started, I was unable to walk without a walker and was wearing a full body brace. Within three months, I was out of the brace and off the walker. I was still in pain, but, thank goodness, I was mobile again.
This twice-a-week training routine continued until March of 2001, when I was knocked for a loop by a staph infection, two bouts of bronchitis, and a severe back spasm which was hauntingly reminiscent of my earlier spinal fractures. I was paralyzed for several hours before getting to the hospital for a series of tests, including several x-rays and an updated MRI. For nearly two months, I was not able to resume physical therapy. The good news was that the MRI revealed a surprising result. First off, there had not been another spinal fracture, and more importantly, it reveled that there had been no additional bone deterioration since my initial MRI almost two years before. My oncologist found this to be absolutely amazing. She attributed it mainly to my monthly Aredia infusions, which undoubtedly has helped, but like most medical doctors, she was reluctant to give any credit to physical therapy.
Fortunately, more and more people, including several medical experts, have begun to discover the value of supervised exercise. One of the leading proponents is Dr. Vert Mooney, a world-renowned orthopedic doctor, surgeon, professor, and lecturer. Dr. Mooney is currently the medical director at a series of spine clinics in California. He is a strong supporter of the MedX program, and it is Dr. Mooney who recommended the program to me. He is not a believer in the ?no pain, no gain? theory of exercise. ?Properly used, training equipment is controlled so that the person will not be injured or hurt,? he explains. If they understand that all their motions are controlled so they can?t be hurt, they might be able to overcome their fear of pain.? It is the fear of pain more than the reality that is often at work. ?Controlling pain and improving mobility are the goal,? he says.
Dr. Mooney feels that the value of physical exercise is not taught in medical school ? a major reason most doctors don?t recommend it to their patients. He believes medical doctors need a better understanding of muscular-skeletal training. One of the reasons physical exercise does not get the attention it deserves, he says, is that ?physical training has never been appropriately measured.? Yet, he feels attitudes are changing, even though it is happening very slowly. ?The emergence of health clubs and increased access to training equipment is helping,? he says.
Montebell is also concerned that medical doctors and insurance carriers do not recognize the value of physical training. He spoke to our myeloma support group in Fairfax, Virginia, in February 2001 and explained that exercise, like eating, is a vital part of everyday life. ?Without structured exercise,? he noted, ?muscles atrophy and we are unable to perform the usual tasks we could when we were younger, much less disease-free.? Inactivity takes it toll on us in many ways, and it?s worsened when we are struggling with a debilitating illness.
?I think patients who get involved in physical training realize they have a lot more energy and mobility. From a general standpoint, the physical changes and the ability to function act almost as an anti-depressant.?
The benefits can be significant. Montebell points out that physical exercise increases the body?s serotonin and triggers the release of endorphins, which reduce the sensation of pain. ?The psychological benefits provide a real sense of empowerment that is more important than cosmetic or physical benefits. You feel so much better and you can do things you thought you wouldn?t be able to do again.?
Dr. Mooney puts it this way: ?When a professional athlete experiences a physical problem, he goes to the trainer and is put on the proper equipment in the training room. Ordinary people should recognize that they, too, can benefit from physical training and rehabilitation. Proper training is much more than simply doing sit-ups at home or pumping iron at the gym. It must be supervised by someone with training and experience.? Dr. Mooney doesn?t consider physical exercise to be ?working out? in a traditional sense, but sees it as a ?safe and controlled way to counter muscular-skeletal problems.? Controlling pain and improving mobility are the goal.
During the several weeks it took for me to regain even limited strength, I was forced off my exercise schedule. This only compounded my problems. My back and leg were sore and my stoop returned. My orthopedic doctor felt that all of this was due to further weakening of the spine and increasing kyphosis, and that it would only worsen. The next day, I slowly resumed my physical exercise routine and within three weeks, much of the discomfort was gone and the ?stoop? was less pronounced. My orthopedic doctor told me he considered the improvement to be ?significant.?
As a jury of one, I know ongoing physical therapy has helped me. I plan to continue this routine as long as I am able because I now know what can happen when physical exercise is not a part of my life.
Like medication and other aspects of my myeloma treatment, I have learned that physical exercise, properly supervised, is simply too important to ignore.
If you are interested in learning more about my experience, please contact me at (703) 938-5574 or by e-mail at firstname.lastname@example.org. Or check out the MedX website at www.medxonline.com.