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From doctor to patient to test subject

One day in June 2009, I was seeing patients at my neurology practice in Catonsville when I felt a sudden headache and noted my words seemed to be slurred. I called my wife, a speech-language pathologist at Johns Hopkins Hospital, and asked if she detected a change in my speech. She urged me to go to the hospital, which turned out to be a very good idea. I had suffered a brain hemorrhage and nearly died that day — on my 24th wedding anniversary.

One of my secretaries drove me to the emergency room at St. Agnes Hospital, where I had been chief of neurology for about 10 years. Within minutes, I could see my CT scan forming on the monitor and was one of the first to clearly observe the white blob of blood on the image.

One of the biggest worries after a brain hemorrhage is shifting of the brain due to increased pressure from the expanding mass of blood. The best way to prevent that is inserting a breathing tube and using a ventilator. St. Agnes then arranged for my transfer the University of Maryland Neuro-Intensive Care Unit. I would go on to need a tracheostomy, a feeding tube and an intraventricular shunt, as well as surgery to place bands around a very large aneurysm that was incidentally found in my brain.

I have no doubt that the excellent care I received at St. Agnes and University of Maryland kept me alive. The National Rehabilitation Hospital in Washington, D.C., where I spent about six months following the hemorrhage, was also an excellent facility — one of several such in the Baltimore-Washington area. After my in-patient rehabilitation, I received out-patient therapy at Sky Neurologic Rehabilitation in Reisterstown and then Kernan's Rehabilitation Hospital.

After it was all over, I had learned to walk again using a four-pronged cane. My speaking and swallowing had returned to near normal. However, I was not driving and did not have a job. The first thing I did was apply for Social Security disability. My physician realized that even though I had made a great deal of progress, I still needed to get better in order to return to work and again provide for my family. He referred me to an out-patient research study at the Baltimore Veterans Medical Center that was open to stroke survivors even outside the military.

I was contacted by exercise physiologist Beth Desanzo, one of the lead investigators, who determined that I was appropriate for the study. She helped arrange MTA Mobility transportation for me and explained the study in detail before I signed the consent forms. Most studies contain a section where the participant acknowledges that no monetary benefit is expected.

I did hope that participating in this exercise study would improve my walking ability. But the main benefit I was expecting was an intangible one: the feeling one gets from doing something good that will benefit others, and in this I was not disappointed. It's the same feeling I would get when I donated blood or white blood cells at the American Red Cross. The same feeling I got when I volunteered on the Professional Advisory Committee of the Epilepsy Association of Maryland or the Transplant Resource Center. It is the same feeling I got as I volunteered and served as president of the Hillcrest Elementary School PTA in Baltimore County for two years. And, years earlier, when I served as president of my senior class at Loch Raven High School in 1977.

My experience in a medical research study has been nothing but rewarding. All of the people I have met while participating have been kind, compassionate, smart and caring. Even though part of this study has required painful fat and muscle biopsies, I am able to remain positive knowing that my participation will help further medical knowledge about stroke recovery and will benefit many others.

Most patients probably would not normally think of volunteering for medical research, but it is well worth considering. It benefits society, of course, but it also helps the volunteer: not just in the good feeling of helping others but in the advancement of medical knowledge — knowledge that may someday save your life of or that of someone you love. (Sometimes there is payment involved as well.)

Johns Hopkins Hospital, University of Maryland Medical Center, the VA hospital and most other local hospitals have a variety of medical studies going on at any given time. They are easy to find. National, state and local patient organizations may also have information about studies that are accepting patients, and the National Institute of Health may be aware of studies seeking participants. Both healthy and sick people are potentially eligible.

Is there a danger in participating? No large research trial is entirely without risk, but all are reviewed and monitored by the hosting institution's internal review board and usually the sponsoring organization's review board as well. They take care to minimize risk and keep volunteers as safe as possible, for their sake as well as the sake of the data being collected. No one wants a volunteer to drop out of a study early (although volunteers retain this right throughout the study).

As the saying goes, "the life you save may be your own." But helping to save someone else's is not bad either.

Dr. Dean Tippett is a clinical assistant professor in the department of neurology at the University of Maryland School of Medicine. His email is dstippett@aol.com.

Copyright © 2015, The Baltimore Sun
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