by Martha Nance, M.D., medical director, Struthers Parkinson’s Center, an NPF Center of Excellence

As April and Parkinson’s Awareness Month come to a close, it is a good time to reflect on what we know and don’t know about this disease. It is also a good time to replace the misunderstanding and despair that are often associated with this disease, with hope, optimism and energy.

The National Parkinson Foundation estimates that there are one million people in the United States with Parkinson’s disease, making it the second most common neurodegenerative disease. Alzheimer’s is the most common. About 50,000 new diagnoses are made each year. Based on these data, we estimate there are about 20,000 Minnesotans wrestling with the complex effects of this disease. This number is expected to double over the next 30 years as we age.

Unfortunately, among the primary features of this disease are a slowing of gait, poor balance, smallness of movement and quietness of speech. You don’t tend to see people with Parkinson’s disease in the community and they don’t shout very loudly on their own behalf. It is easy to ignore elderly people who speak quietly and move slowly; they just melt into the furniture.

Even more unfortunately, this sends a discouraging, and incorrect, message to people who have Parkinson’s disease: “Sit. Stay. There’s not much else to be done.”

It is 2012.  That message is simply wrong.

Not everyone with Parkinson’s disease has great-grandchildren or even grandchildren. Although the average age of diagnosis is between 60 and 65, many are in their 50s and some in their 40s. We even have patients who are in their 30s when symptoms begin.

Treatments—medication, rehabilitation therapies, sometimes surgery—combined with a favorable attitude and proper education, have converted Parkinson’s into a manageable chronic disease. Vigorous physical exercise, in particular, appears to stabilize function and preserve brain cells. Parkinson’s disease must be dealt with, and the impact on people’s lives is significant. But, like diabetes and breast cancer, it is a disease that a person can live with, and live well, for many years.

My patients not only WERE amazing people, they ARE amazing people. They work as doctors, nurses, accountants, teachers, mechanics, musicians and business owners. They climb Mt. Kilimanjaro. They win 5K races.  They write books. They participate in Civil War reenactments. And (only in Minnesota) they prepare an annual lutefisk dinner for 50 relatives. One was featured in the newspaper last year for his Christmas light display.  Amazing people. It is a privilege for me to belong to the Parkinson’s disease community.

There is much that we don’t know about Parkinson’s disease—in particular, how to stop or reverse the gradual loss of brain cells. But the patients of today have opportunities not available 50 years ago. They can actively pursue aggressive management of their symptoms and live well for many years after the diagnosis. And if they want, they can be part of the solution. Clinical research is focusing more and more on treatments to address the disease process itself, as well as better ways to manage symptoms. These research studies need participants, advocates, financial support, and an interested and engaged community. Only together can we find better solutions to the problems presented by Parkinson’s disease.

I will talk in future blogs about current treatments, new research breakthroughs. If I am feeling brave enough I may write about areas of controversy or disagreement. But for today, the message is “Parkinson’s awareness.”

If everybody would tell one other person about Parkinson’s disease, invite one other person to the Moving Day Twin Cities walk, or an educational program, or a fundraising event, we would double the energy available to fight this disease!

Note: The information included on this blog is for educational purposes only. It is not intended nor implied to be a substitute for professional medical advice. Readers should always consult their own health care provider to determine the appropriateness of the information for their own situation. Readers should also contact their own providers if they have any questions regarding a medical condition or treatment plan. Reading the information on this blog does not create a physician-patient relationship.

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