Volunteer group offers support for Parkinson’s patients, families

“You have Parkinson’s disease.”

Hundreds of residents in the Lexington community have heard those words.

Delivered to me by a neurologist five years ago, they were shocking and bred all sorts of questions. Was this disease terminal? How could it be me? Was there a cure? How would I tell my family, friends and co-workers?

As we observe National Parkinson’s Awareness Month in April, it is important to know those questions, and others, are answered with positive support through the efforts of the Lexington Area Parkinson’s Support Group.

The four words above are not reserved for any age, gender, race or position in the community.

For example, actor Michael J. Fox is a noted national Parkinson’s spokesperson. Muhammad Ali suffered through the ravages of severe Parkinson’s before his death. But most of those with the disease are individuals such as a family member, a close friend, a co-worker, or someone like me.

LAPSG has been in existence since 1978, founded by Nellie Reed and Margaret Smith (no relation). There are approximately 300 local residents who, by request, receive the monthly newsletter and about 100 of those participate in various programs and services offered by the organization.

Local resident Elaine Keith, the leading volunteer champion for Parkinson’s support in our community, guesses that number only touches the surface of those in our community who have Parkinson’s.

According to the American Parkinson’s Disease Association, about 10 percent to 20 percent of people diagnosed with Parkinson’s are under the age of 50, and about half of those are diagnosed before age 40.

Because this is a neurological disease, problems may include speech and swallowing difficulties, difficulty walking, digestive issues, depression, blurred or double vision, loss of sense of smell, slowness in movement, stiffness, memory problems.

Perhaps most common are hand tremors that may increase in intensity over time.

In my case, Parkinson’s started with the inability to write legibly, to sign my name or strike the keys on my computer. Fortunately, medication has come to my aid over the past couple of years. I can write and type again, albeit some days better than others. Many are less fortunate.

Beyond the aid from various types of medication, residents receive important support through a number of LAPSG programs, including physical exercise, swimming and boxing, voice control and speech therapy, music and yoga groups. In addition, the organization provides educational speaker programs designed to help the patient and the patient’s family, friends or co-workers.

All of this support for individuals with critical needs comes with a cost. LAPSG is a registered 501(c)(3) nonprofit with an annual income of just under $40,000. All of those dollars come from caring individuals, corporations and others in the community. There are no federal or state dollars dedicated to the programs. The organization depends entirely on volunteers to manage activities and programs; there is no paid staff.

For the most part, the Parkinson’s message reaches community residents through public-service advertising support, brochures generously displayed at doctors’ and neurologists’ offices and during a fall workshop and seminar referred to as “The Gathering.”

Parkinson’s knows no boundaries. In many cases, patients need to take an unplanned early retirement, which has an obvious financial impact on one’s family. Depending on one’s mobility, an individual may need to move to a smaller, single-level home or — if the disease is rapidly progressing — move closer to adult children in another city or state.

In addition, spouses or adult children often have to take responsibility for the patient’s finances and daily care, which can be costly, time-consuming and deeply emotionally draining for the care partners.

The Lexington area is fortunate to have available the programs and services provided by LAPSG. For more information, visit the website at www.parkinsonslexington.com.

From the heart of one Parkinson’s patient to a community that cares: Thank you.

This story was originally published April 12, 2017 at 4:46 PM with the headline "Volunteer group offers support for Parkinson’s patients, families."