If someone you love has been diagnosed with Parkinson’s disease, the best thing you can do — for yourself and for your loved one — is to get educated.
Feeling overwhelmed and confused by a Parkinson’s disease diagnosis is not only common for the person with the disease, but also for the primary caretaker. To help build your understanding, we asked experts who treat Parkinson’s every day: What should caregivers know about Parkinson’s disease? Here are their top eight frequently asked questions:
1. What is Parkinson’s disease? Parkinson’s is a progressive disorder that affects the nervous system and leads to problems with movement that worsen over time. “Parkinson’s disease results from a loss of cells in the brain that make dopamine, which is a critical chemical for coordinating movement,” says Ariane Park, MD, a neurologist at Ohio State University’s Wexner Medical Center who specializes in treating people with movement disorders, including Parkinson’s.
2. What causes Parkinson’s disease? Scientists aren’t sure exactly what causes Parkinson’s, but they have identified a couple of factors that may play a role: genetics and the environment, or a combination of both.
Most of the time, the disease occurs sporadically, meaning no other family members are affected. However, “a small group of patients do have familial Parkinson’s disease, which is caused by a mutation in one of their genes,” says Eugene Lai, MD, a neurologist with Houston Methodist Neurological Institute who specializes in neurodegenerative diseases.
Researchers are also studying whether environmental toxins, such as pesticides, may play a role, according to the National Institutes of Health (NIH), though the risk is believed to be small.
The biggest known risk factor for Parkinson’s? Aging. The majority of people who start to develop Parkinson’s disease are 60 or older.
3. What are the common symptoms of Parkinson’s disease? “Most people think there must be tremors for it to be Parkinson’s disease, but that’s not always the case,” says Adena Leder, DO, a neurologist with the Adele Smithers Parkinson’s Disease Treatment Center at NYIT College of Osteopathic Medicine in Old Westbury, New York. While each patient’s experience is unique, the most common Parkinson’s symptoms include:
- Tremors
- Slowness and stiffness
- Memory difficulties
- Mood changes
- Swallowing issues
- Balance problems
- Sleep difficulties
- Erratic changes in blood pressure
Other symptoms may include constipation, fatigue, rapid eye movement (REM) sleep behavior disorder, depression, and anxiety.
Sometimes, the earliest Parkinson’s symptoms can show up more than a decade before a diagnosis, Dr. Leder says. Those may include a loss of sense of smell and acting out dreams during sleep.
4. How will Parkinson’s disease progress? Because Parkinson’s is neurodegenerative, symptoms get worse over time. “The progression varies from person to person, and we unfortunately have no way of knowing how fast or slowly a person will progress,” Dr. Park says. Leder notes that progression can occur over two decades or as quickly as within two or three years
People with Parkinson’s need not feel helpless when it comes to how their condition will develop, however. “Patients who are more active — and are engaged in meaningful exercise, including physical therapy — tend to progress more slowly and have a better quality of life,” Leder says.
5. What Parkinson’s disease treatments are available? “Although there is no cure for Parkinson’s disease, it’s important to know that it is a treatable condition,” Dr. Lai says. “There are many treatments for Parkinson’s disease, and they can be divided into pharmacological, non-pharmacological, and surgical.”
Physicians usually try to treat Parkinson’s with medications first, specifically those that increase dopamine in the brain.
“Non-drug treatments include physical therapy, daily exercise, adequate rest, balanced diet, and socialization,” Lai says.
In more advanced disease, when medications are not controlling the symptoms well, a form of surgery called deep brain stimulation may be an option.
6. What can I do as a caregiver to help my loved one? You can’t stop the condition, but you can facilitate some parts of treatment. You can encourage your loved one to exercise regularly, sleep well, and stay hydrated, says Park.
“Caregivers also play a critical role in observing mood and can provide important insight into the patient as a whole, helping the physician to best tailor care,” she adds.
7. What are some warning signs that Parkinson’s disease is progressing? “If a person has increased difficulty with swallowing, that can indicate the disease is progressing,” Leder says. “It may also indicate that there needs to be a dietary change.”
A decline in gait can also signal the disease is getting worse. “If the person isn’t already in physical therapy,” she says, “this is a good time to start.”
8. What can I do to avoid caregiver burnout? Parkinson’s disease is a chronic illness, and the burden on caregivers can be overwhelming. “As a caregiver, it’s important to have good insight and regularly evaluate your physical, financial, and emotional strain before you experience burnout,” Park says. It’s also important to have an aide or another family member who can offer you periodic “time off.”
Your physician or a clinical social worker can offer additional suggestions and resources to help you as a caregiver. You can also find support through local support groups and chapters of the National Parkinson Foundation.
http://healthcaresolutionsplus.org/8-things-every-parkinsons-disease-caregiver-should-know/
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