Harriet Baker, Ph.D., Emeritus Professor of pathology and laboratory medicine at the Burke Neurological Institute and Emeritus Professor of research in neuroscience at the Brain and Mind Research Institute of Weill Cornell Medicine was a Parkinson’s disease (PD) researcher for many decades before she began exhibiting signs of the disease at age 55.
A neurological disorder affecting around one million Americans, Parkinson’s disease is marked by the gradual death of certain dopamine-producing brain cells. The resulting dopamine deficiency leads to a series of physical and mental symptoms including postural instability, tremor, rigidity, bradykinesia (slowed movements), speech problems, behavior issues, impaired memory and mood disorders.
Dr. Baker’s understanding of PD as both a neuroscientist and a patient gives her an unusual degree of insight into her condition.
“I’m so familiar with the therapeutic options that I was basically able to design my own treatment plan,” she explains.
However, such extensive knowledge comes with a price: knowing the full extent of the uphill battle she and her fellow Parkinson’s patients are facing.
“I don’t believe we’ll be able to cure PD in our lifetime,” she admits, citing the inability to regenerate brain cells as one of the primary barriers to developing an effective remedy. However, there are a few basic steps that Parkinson’s patients and their caregivers can take to ensure they’re adequately prepared for the long road ahead.
4 Essentials of Parkinson’s Care
After having lived with the disease for more than two decades, Dr. Baker says there are four main things she believes every person living with PD really needs:
A Good Doctor
A trusted physician (typically a neurologist or movement disorder specialist) who will listen to the patient and the patient’s caregiver is vital. Part of what makes this disease so difficult to treat is that it presents differently in different people. Each patient experiences a unique set of symptoms that will only respond to certain medications. The effectiveness of these medications may change over time as well, so finding the right treatment plan often involves a great deal of trial and error. The doctor a PD patient chooses must be able to accurately assess and respond to their ever-changing condition. If there are any communication issues or doubts regarding the quality of care a patient is receiving, never hesitate to seek a second opinion.The Right Exercise Program
Research has shown that regular exercise not only makes it easier for individuals with PD to move but also slows the neurodegenerative processes in the brain. Dr. Baker can attest to this. “Some mornings, I get up and I can barely move,” she notes, “but after 40 minutes on the bike, I’m fine.”
Walking, yoga, tai chi and dance classes are other good ways to get moving. Physical therapy can also help mitigate motor symptoms in some people. As we age, our joints need regular movement to prevent stiffness. For PD patients, this is even more important. Incorporating daily exercise and activity in a loved one’s Parkinson’s care plan is well worth the effort.A Solid Support Group
Being able to talk to other people who are going through similar challenges is essential for anyone who is coping with a serious illness. No matter how accepting society is, there are some situations that can only be fully understood by those who have experienced them firsthand.
At her Parkinson’s disease support group, Dr. Baker has been able to discuss bothersome symptoms, pharmaceutical and non-pharmaceutical treatment options, emerging research, public awareness, representation in the media, coping skills and much more.
Support groups are beneficial for Parkinson’s caregivers as well. Sharing similar experiences and advice helps ease many frustrations caused by the sometimes overwhelming feeling of being in this role alone.A Loving Caregiver
“Lack of control is the most frustrating thing I deal with on a daily basis,” Dr. Baker admits. “Some days will start off great only to end in a physical and mental fog that even medications can’t mitigate. Other days start bad and just get worse.”
But through it all, she says the love and care she receives from her husband are instrumental to helping her cope with the disease. Having a spouse who is also an accomplished neuroscientist and happens to be a disciplined Ironman Triathlete means she is seldom allowed to get away with skipping a workout or a dose of her medication.
One thing many Parkinson’s caregivers struggle with is the fine line between helping and enabling loved ones, especially when their condition affects the ability to carry out basic activities of daily living. Encouragement to try a little harder is healthy, but caregivers must realize that there is a breaking point where even the patient’s best efforts cannot yield improvement. Keeping that balance is crucial, and therapy sessions, exercise, casual strolls, etc. should always end on a positive note. Constant reminders of one’s limitations can be detrimental to a PD patient’s outlook and weaken their resolve to participate fully in their plan of care.
For now, the world of PD treatments is “not ideal” Dr. Baker acknowledges. However, establishing a solid four-part foundation for a patient’s care plan can do wonders for their physical and mental health and their quality of life.