Improving care & advancing research
Rigidity of the body, tremors, inability to straighten the posture and a slow gait – four cardinal signs of Parkinson’s disease (PD), a disease for which awareness is being raised globally in April as they seek to improve care and advance research toward a cure. And in an effort to that end, the theme is “Start a Conversation” – a call to action that urges people to talk about Parkinson’s.
It is estimated that 10 million people worldwide are stricken with Parkinson’s, a condition that is second to Alzheimer’s.
According to neurologist Dr. Edwin Demeritte, Parkinson’s disease is a chronic neurodegenerative disorder which research shows is a result of the brain stopping the production of an essential chemical called dopamine.
“This means the nervous system is systematically broken down over time and it mostly affects mobility and a person’s mood. The usual onset of the illness is 60 years old, but it can present early depending on the individual. Even if there isn’t a history of this disease in your family, each additional decade you age beyond this point, your likelihood of developing it doubles.”
The doctor, who practices out of the Bahamas Neurological Center at Caves Village, said when you look at the present life expectancy in The Bahamas, the average age is 88 for females and males is about 75.5 years.
“So, because we are living longer, it is expected that we are seeing a higher prevalence of this illness in recent years,” said Demeritte in an earlier interview with The Nassau Guardian.
Demeritte said even though there are many people who are likely to have the illness, it is probably not well represented by the current known cases due to people not recognizing it, or being embarrassed about having the illness, or admitting that they have a family member who suffers from it. This approach, he said, actually does more harm than good, and treatments that can be used to manage the condition are made less effective the longer people go without seeking help.
Despite the illness being present for centuries, there is still no cure for it. But he said there are treatments that can help to slow down the progression of the illness. If treated well, he said, many persons can live 20 to 30 years beyond the onset of the disorder.
“The unfortunate thing is that people are mostly unwilling to seek help for the elderly members of their families due to assuming the person is just old and this is a natural part of old aging. While this can be true, it is still advised that when your family member starts to show signs of stiffening, tremors and a slow gait that is not natural for them, it should be checked out by a physician in case it is something more serious or it can be treated.”
He said there is no lab test to indicate if a person has Parkinson’s disease, but a series of observational tests and interviews are necessary for proper diagnosis.
If the disorder is left untreated, the doctor said it can lead to mobility degenerating rapidly. By an average of eight years, independent mobility would have been lost and the person may be entirely bedridden by 10 years without treatment. Cognitive decline, dementia or other cognitive conditions may rapidly develop as well as a result of not seeking treatment. Overall, the mortality rate of people with Parkinson’s disease almost doubles compared to persons unaffected with the illness.
The neurologist said the main treatments for Parkinson’s are use of the medication Levodopa, multidisciplinary management and, on occasion, even surgery. He said there is help for the condition and to ensure your family member has the best chance at remaining independent as long as possible, early and consistent treatment is necessary.
Demeritte said the illness not only affects the people afflicted, but the whole family – emotionally, physically and financially. He said it’s for this reason that despite how the person afflicted may feel about it, family members getting help and showing support every step of the way is essential.
Mavis Darling-Hill, founder of Kingdor National Parkinson Foundation, works to heighten awareness about the disease and the foundation. They have adopted the Parkinson’s Foundation’s theme this year of “Start A Conversation”, which encourages people to talk about the disease with their family, friends, neighbors, healthcare providers, businesses and the community at large.
“People need to know the importance of starting a conversation. Over the past 19 years we have encountered people who are simply embarrassed to talk about the condition. It is viewed by many as a closet disease – like this information is not necessary to share. Our organization’s doctrine is the best quality of life, but that is not possible if your story is not known, you refuse to share. Whenever something is shared, there are benefits for all concerned.”
She said the Parkinson’s signature “P” logo is an excellent way to start the conversation.
“Whenever I am asked what the symbol stands for I explain that the ‘P’ represents Parkinson’s disease and I tell the story that it represents.”
Darling-Hill further said that “Start A Conversation” is important because people need to know that even though the onset of the illness is 60, that many juveniles and young adults also suffer from the condition.
“Getting an accurate count of the number of persons living with ‘PD’ (Parkinson’s disease) is difficult; many persons are misdiagnosed, underdiagnosed or do [not] consult with a physician at all. However, during the early stages of the illness, it is assumed that the symptoms are the result of normal aging or other health issues, such as arthritis. Parkinson’s disease affects men and women in almost equal numbers. The disease knows no social, ethnic, economic or geographic boundaries.”
Darling-Hill said knowledge is power.
The Kingdor National Parkinson’s Foundation was established in 2000 by Darling-Hill, an advocate for awareness and research who had a family member with Parkinson’s disease. The organization was designed to assist people with the illness as well as educate those not aware of the disorder. One of the primary goals of the organization is to help raise funds to assist in finding the cause and the cure for Parkinson’s disease.
Actor Michael J. Fox and the late boxer Muhammed Ali are two famous people afflicted with Parkinson’s disease.
Kingdor has planned several activities in commemoration of the awareness month – a church service at Mount Tabor Church, Pinewood Gardens, on March 17; the Foundation’s 19th Annual Gala Ball, which will be held at the Melia Nassau Beach Resort, Cable Beach, on Saturday, April 6; and a Walk/Run Competition on June 29.
A workshop for caregivers which will be held on July 27, and a speech competition for junior and secondary school-aged children will be held on November 18. Kingdor officials also plan to visit schools to talk to faculty and students about Parkinson’s.
Kingdor also invites interested people to host DIY (do it yourself) fundraisers in honor of Parkinson’s Awareness Month, or host an event like a brunch or walk with the proceeds earmarked to help make lives better for people with Parkinson’s.