Tim Giago: Science getting closer to solving multiple sclerosis

Opinion

Tuesday, June 22, 2010

It contributed to the death of the black comedian, Richard Pryor.

Actresses Annette Funicello, formerly of the Mickey Mouse Club and Beach Blanket movies, and Terri Garr, Young Frankenstein and many other movies, have it. It is the debilitating and incurable disease known as Multiple Sclerosis (MS).

As a part of my education about the disease I found myself in Seattle, Wash., this weekend because my wife Jackie, who has MS, belongs to a group known as Teva Neuroscience, a group that holds annual forums in different parts of the United States that brings men and women with MS together to discuss the disease and talk about one of its major treatments, a medication known as Copaxone.

Among the attendees are people of nearly every race and creed, but the several forums I have attended in the past, I have never met a Native American with MS. I am certain that there are probably some out there, but as I mentioned, I have met none at the forums.

About 17 years ago most people with MS were pretty much out in the cold when it came to effective treatment. MS is a neurological illness that attacks certain areas of the brain and can cause paralysis and many of the victims of the disease are relegated to wheel chairs.

Jackie discovered she had MS when she went to her eye doctor and she later found out that many MS patients find out about the illness from their optometrists. She was on the verge of paralysis when she was brought on board for a special medical experimental program at the University of New Mexico. She was introduced to a medication given by injection known as Copaxone. For her it was literally a life saver. Not all patients can say that, but she was one that took to it and has been on it for nearly 18 years and for her it was miraculous.

Let me say here that there was nothing dramatic about her improvement because it took place over a long period of time. It was not instantaneous. As one of the first recipients of the drug she is one of the few that has been on Copaxone from nearly the beginning. She is one of the advocates that set an example for the good things that can happen.

But not all MS patients react positively to the drug. In some there is no improvement and in others the effect is negative. But with Jackie and many others, they are able to continue living an active life, work at full-time jobs and enjoy many of the activities they enjoyed prior to contracting the illness.

If you don’t like needles Copaxone may not be for you if you have MS because medication is administered by injection every day of the week and if they never find a pill that can do the same job, the shots will be administered for the rest of their lives.

Ann Simpson, the director of the Teva Forum gave a speech on Saturday night at the ending banquet, and talked about the many friends she had made as the director and of the many uncomplaining, cheerful and courageous people with MS that she had come to love and respect.

I am beginning to understand how she feels. Each Forum I have attended has enlightened me about the effects, good and bad, of the illness and the more I have learned, the more supportive and understanding I have become with Jackie.

If there are any Native Americans out there who have MS, or suspect they do, they want to know about Teva Neuroscience and they can find out about the program by calling Shared Solutions at 1-800-887-8100.

No one knows what causes MS or whether there will ever be a cure for it. At the Forum I heard some of the patients talk about hives as the cause, or mononucleosis or even that it is caused by vaccinations, but everyone there knows that this is all merely speculation. And as far as I know, Annette Funicello and Terri Garr are not on the Copaxone program so I do not know how they are doing.

The trip to Seattle for the Forum was fun, but the trip home on Delta Airlines was pure hell, but that’s for another column. Now I know why I hate flying.

Tim Giago, an Oglala Lakota, is the publisher of Native Sun News. He was a Nieman Fellow at Harvard with the Class of 1990. His weekly column won the H. L. Mencken Award in 1985. His book Children Left Behind was awarded the Bronze Medal by Independent Book Publishers. Giago was inducted into the South Dakota Newspaper Hall of Fame in 2007. He can be reached at editor@nsweekly.com.