Harriet Baker was a neurologist at Burke Medical Research Institute and an associate professor at Weil Cornell Medical College. She was a Parkinson’s disease (PD) researcher years before she herself began exhibiting signs of the disease at age 55. Her familiarity with the disease certainly provided insights, and as it progresses, she is able to share yet another point of view supplemented by her own knowledge and her personal experiences.
Parkinson's disease is a neurological disorder affecting around one million American adults. It is marked by the gradual death of 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.
Baker’s scientific background does give her an advantage when dealing with the disorder. “I’m so familiar with the therapeutic options that I was basically able to design my own treatment plan,” but such knowledge comes with the price of knowing the full extent of the uphill battle she and her peers are facing. “I don’t believe we’ll be able to cure PD in our lifetime,” she says, citing science’s inability to regenerate brain cells as one of the primary barriers to developing an effective antidote.
Current Therapies Have Limited Usefulness
There are medications available to help minimize some of the effects of the disease, mainly by replacing the dopamine lost to cell death, but their effectiveness is limited and tends to diminish over time. Baker, for example, has taken Requip, a drug used to stimulate dopamine receptors in cells, for more than a decade, and she must now ingest a new dose every three hours to stave off her symptoms.
Such prescriptions can also cause undesirable side effects like dyskinesia (uncontrollable movements and tics) and impulse control problems, such as excessive gambling and hypersexuality.
As a professor of neurology and neuroscience, the goal of Baker’s current research is to use stem cells to replace the dopamine-producing neurons that are destroyed by PD. If successful, this line of research could potentially do away with the need for the majority of dopamine-replacement medications.
The True Challenge PD Patients Face
Part of what makes this disease so difficult to treat is that it presents differently in different people. Each individual will suffer from a unique set of symptoms that will only respond to certain medications, so finding the right treatment often involves a great deal of trial and error.
For Baker, it is not the symptoms themselves that are the most taxing part of the disease. “Lack of control is the most frustrating thing I deal with on a daily basis,” she says. "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."
After having lived with the disease for nearly two decades, Baker says there are four main things every person with PD really needs:
- A Good Doctor
A trusted physician is not necessarily the one with the most impressive pedigree, but one who will listen to their patient and the patient’s caregiver. The ability to accurately assess and respond to their patient’s ever-changing condition is especially crucial due to the complex, progressive nature of Parkinson’s. If you feel that your loved one is not getting the care they need, it may be time to look into getting a second opinion. Family members and caregivers should also help the physician understand the daily difficulties (or successes) the patient regularly experiences.
- The Right Exercise Program
Regular exercise has been shown not only to make it easier for individuals with this disease to move, but also to prolong the survival of dopamine-producing neurons. “Some mornings I get up and I can barely move,” says Baker. “But after forty minutes on the bike, I’m fine.” Walking, yoga and dance classes are other good ways to get moving, and anytime music can be incorporated into an exercise program for a person with PD is a plus. Physical therapy can also help mitigate symptoms in some people. Generally, as we age our joints need movement to prevent stiffness. For PD patients, this is even more true. Incorporating daily movement and activity in the routine is valuable and well worth the effort.
- A Solid Support Group
Being able to talk to other people who are going through similar challenges is essential for people with any ailment. No matter how accepting society is, there are just some situations that can only be understood by those who are living with certain diseases. When long-time PD advocate and sufferer, Michael J. Fox, began starring in the NBC sitcom, “The Michael J. Fox Show,”—which features Fox as a man diagnosed with Parkinson’s trying to balance work, family life and his disease—Baker’s support group was able to honestly discuss their feelings about the show. While some found the show to be a good awareness-builder, others weren’t as pleased. “Many of the people in the group didn’t think it was positive. It was very disconcerting to watch,” Baker says. Support groups are beneficial for caregivers as well. Listening and sharing similar experiences as well as ideas helps ease many frustrations caused by the sometimes overwhelming feeling of "being in this alone."
- A Loving Caregiver
Although Baker doesn’t yet need a caregiver to help her with most of her daily activities, she says the love and care she receives from her husband has been invaluable to helping her cope with the disease. Having a spouse that happens to also be an Ironman triathlete means Baker is seldom allowed to get away with not working out or not taking her medications. One thing many PD caregivers struggle with is determining the difference between helping and enabling a loved one, especially when their condition affects their ability to carry out daily activities. Encouragement to try a little harder is healthy, but caregivers must realize that there is a degenerating point for the patient to simply not go any further. Keeping that balance is crucial, and therapy sessions, exercise, casual strolls, etc. should always end on a positive note. Being reminded of what we cannot do only hurts the current frame of mind and our inner strength to battle a progressively worsening disease.
For now, the world of PD treatments is, “not ideal,” according to Baker, but having the right doctor and a strong support system can do wonders for people with the disease.
There are many therapies available and research is ongoing on everything from symptomatic treatments to restorative and neuroprotective ones. Many treatments are in experimental phases and some work better on certain individuals than others. Because the disease is different for all patients, so are the therapies and treatments. It is important to pursue possibilities and information to determine what is right for the patient, caregiver and family.