Try to go with your parent to his first few doctor's visits. If that isn't possible, you'll need access to his medical records in order to discuss his medical issues with the physician. The Health Insurance Portability and Accountability Act (HIPAA) protects the privacy of these records, so ask your parent to notify his doctor that it's okay to share that information with you.
The following questions can open a dialogue with the physician or nursing staff to help you understand Parkinson's disease and treatment options and plan for your parent's care.
How confident are you that my parent has Parkinson's?
Ask the doctor to briefly walk you through how her clinical assessment ruled out other possible diagnoses and pointed to Parkinson's. Speaking with you may assist her in nailing down the correct diagnosis -- you may have noticed changes in your parent that he hasn't, or remember important details of his medical history that he's forgotten. Sometimes, when the physician is unable to reach a conclusive diagnosis, she may want to examine your parent again in a few months to see how symptoms develop.
How long can my parent expect to live independently?
With treatment, many Parkinson's patients maintain a good quality of life for about 10 to 15 years before becoming significantly disabled and needing help from others with dressing, eating, and other daily activities of living; others decline faster, within 5 to 10 years. There's no way to predict at the outset which group your parent may fall into.
The physician should be able to explain whether your parent has early, middle, or late stage disease and discuss the general kinds of changes you may see in his ability to handle activities of daily living as the illness progresses. After two or three years of observing how your parent's disease evolves, the doctor should have a better sense of what the future holds; patients who'll suffer from severe disability down the road tend to run into problems earlier.
When should my parent start taking Parkinson's medication?
It depends on how badly the disease symptoms are interfering with work, play, and life. The doctor's or nurse's advice on this matter will have to factor in your parent's job, daily activities, and hobbies. If motor difficulties aren't too bothersome yet, there's no harm in delaying drug treatment. But if a tremor or stiffness puts a cramp in your parent's tennis game or makes it hard to take legible handwritten notes at the office -- or if embarrassment over his shakiness is discouraging him from social gatherings -- the clinician will likely recommend beginning medication.
Your parent may resist that idea because he's afraid of the uncontrolled, writhing movements called dyskinesias that are the long-term side effects of levodopa, the gold standard Parkinson's medication. Or because he thinks the pill eventually stops working, he wants to wait for the "best window" to use it. Your parent's doctor should be able to address these concerns and explain why it makes sense to start drug therapy with either levodopa or other drugs called dopamine agonists and MAO-B inhibitors.
What side effects could my parent experience from medication?
Your parent will get the most out of drug therapy if he and your family understand the basics of how the pills work and how to take them properly. For each drug that the doctor prescribes, ask about:
- The name of the medicine.
- What it's for.
- What dose to take.
- How often your parent should use it each day, and over how long a period of time.
- Whether to take it with food or not.
- How to know if the drug is working -- what changes should you look for in your parent?
- What common or serious side effects to watch for, and what may be done to minimize them.
By closely observing how your parent responds to medication, you and other family members can give the physician valuable feedback and help determine the best dosage to control symptoms while minimizing adverse effects such as dyskinesias. If your parent takes medicines for other illnesses, ask the doctor to check for possible drug interactions.
Can you recommend any exercise programs in the area for Parkinson's disease patients?
Regular exercise can improve your parent's overall health and enhance motor function by strengthening muscles and increasing flexibility. Ask the doctor to refer your parent to a physical therapist for a consultation and guidance in setting up a fitness program. Local medical clinics or hospitals may offer exercise classes tailored to Parkinson's patients, such as yoga, tai chi, or water aerobics.
Are there activities that are unsafe for my parent, such as driving a car?
Generally, with medication your parent should still be able to engage in most of the things he enjoys doing for many years. But as Parkinson's disease becomes more severe, driving a car could grow hazardous because of the way the illness slows motor responses and reaction time. Not to mention that excessive tremor, freezing of motion, and dyskinesias could also make it hard for your parent to pilot a car safely.
Does my parent need to change anything at home at this point?
Depending on the doctor's assessment of how much Parkinson's disease is hindering your parent's mobility and balance, you may want to survey the environment at home with an eye toward safety and ease of movement. You might suggest rearranging furnishings in the kitchen or bathroom that could cause tripping or falling.
This issue is likely to become important, if not now then later on. Eventually, your parent may not be able to walk up steps, so he may have to give up the family house with multiple sets of stairs for a condo with an elevator. That's something you'll need to keep in mind for the future.
Do you know of any good local support groups for Parkinson's disease patients?
A support group can be a great source of encouragement when your parent is emotionally ready to connect with others facing similar circumstances. The local hospital or medical clinic may host one.