When former NBA star basketball player Brian Grant was diagnosed with Parkinson's, he worked hard to hide the disease from public view. "I was too scared to go on interviews for anchor jobs or jobs where I could maybe be a commentator or radio host," he recalls.
Terri Peacher-Ransom, a research advocate with the Parkinson's Disease Foundation, similarly recalls how her husband attempted to keep the disease a secret, even within his own family. "He wanted to hide it from our children," she remembers. "I had to convince him that they needed to know, despite their ages, since they too would be involved in his care -- if nothing but to help with a glass, open a bottle, or assist him in some other manner." While her husband eventually opened up to his children, he continued to hide the disease from his siblings -- which, Peacher-Ransom notes, "alienated him from them and family functions."
Parkinson's disease is a chronic and degenerative neurological disorder that results in the death of brain cells -- specifically, those releasing dopamine, a neurotransmitter. The progression and symptoms manifest differently in each patient. Motor impairments result in symptoms including tremors, slowed movement, postural instability, and loss of balance -- which, among other things, can lead to frequent falls. Additional symptoms include mood disorders, such as depression and anxiety, sleep disturbances and fatigue, speech and swallowing problems, and cognitive impairment ranging from mild memory difficulties to dementia.
As of today, there is no known cure for Parkinson's, which for Grant is one of the most troubling parts of the disease. "It's something that I'm going to have to live with, and it will never go away," he says. "Emotionally, that's devastating." There are pharmaceuticals that reproduce or prevent the breakdown of dopamine, but according to leaders at the Michael J. Fox Foundation for Parkinson's Research, "current medications available today only address the symptoms of Parkinson's disease, while the underlying disease continues to progress."
During the early course of the disease, pharmaceutical treatment "can allow a person with Parkinson's disease to return to a near-normal life," says James Beck, Ph.D., Director of Research Programs at Parkinson's Disease Foundation. He adds, however, that as the disease progresses, the doses and frequency of the drug administration need to be increased -- leading to complications that include uncontrolled movements.
According to Kulreet Chaudhary, M.D., Director of Neurology at Wellspring Health in Scripps Memorial Hospital, the optimal response to Parkinson's disease is adopting an attitude of "life improvement" instead of disease management. "A lot of the changes I make for my patients makes them more active, more social, more involved in their communities," she says. "Health can be fun, and certainly the rewards of taking steps towards improving your health bring you more joy."
The conventional approach to treating Parkinson's disease, she explains, is starting patients on medications, then adjusting those medications during semi-regular follow-up visits. An integrative approach goes a step further -- building on the conventional foundation, then exploring what else can be done to help manage symptoms and improve the patient's quality of life. Protocol includes yoga and tai chi to improve balance, healthy dietary choices to reduce fatigue and constipation, and meditation and exercise to help lift depression.
The Michael J. Fox Foundation, which emphasizes the value of exercise, notes that those who stay active and relatively limber "can help improve their balance and motor coordination." Beck concurs that diet is important in preventing and managing Parkinson's disease. "Evidence suggests that a Mediterranean-like diet is not only associated with a lower risk of Parkinson's disease, but it is also the recommended diet for those who have been diagnosed with Parkinson's disease," he says.
Shortly after being diagnosed with Parkinson's, Grant began a naturopathic regimen. "I attribute my slow progression [of the disease] to a lot of that regimen," he says. "I also participate in the 'Powering Forward Boot Camp,' which is a really tough workout." Grant additionally has stopped drinking and even went vegan for a period of time. "I definitely am more consciously aware of what I put in my body, as far as the types of foods and drinks I consume," he says. "It's hard, you know," he admits. "I've got a sugar addiction with cookies and sweets."
To help loved ones with Parkinson's adopt healthy lifestyle habits, Chaudhary advises, make the changes together. "If you want to encourage him/her to start yoga or tai chi to help with balance, then do it too," she says. "If there is room for improvement in his/her diet, make changes in yours too. It is hard to make changes when you are sick, and even harder to do it alone. But when you have a loving, compassionate partner making those changes with you, the changes don't feel so daunting."
Make changes gradually, she advises. Regarding dietary changes, for example, she suggests initially moving away from processed foods and replacing them with fresh foods that are nutrient-dense. Next, she says, eat less meat and move towards a more plant-based diet. "This doesn't mean being a vegetarian," she emphasizes, "but just consuming 25-50 percent less meat, especially processed red meat." Lastly, she advises, look for ways to increase fiber in the diet -- which, she acknowledges, may happen naturally through increasing vegetable and fruit consumption.
For patients and caregivers alike, experts note, it is critical to build a supportive network of friends, family, and health care professionals, so as to cope most effectively with the disease and its impact. "A doctor doesn't always know what community resources you may benefit from, so go out and look for yourself," Chaudhary recommends. YMCAs may offer pool therapy; public transportation systems may offer free rides for patients with limited alternatives; and local colleges may offer free or affordable nutrition courses, she notes. "If your time is limited, take advantage of online communities that will allow you to connect with others who share similar caregiving issues and challenges," leaders at the Michael J. Fox Foundation further recommend.
Most importantly, advises Grant, continue doing whatever gives you joy in life. "Don't be scared that you can't do things the way you used to do them," he says. "Just do them to the best of your ability, and be grateful."
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