Talking With Your Doctor About Parkinson's Disease
You probably have lots of questions about your Parkinson’s disease diagnosis. The best way to get the answers you need is to talk with your doctor. But, what should you ask? Here's a list of good questions to get you started.
That's the first question you should ask. Parkinson's disease is hard to diagnose. In fact, sometimes doctors think someone has Parkinson's when they don't. There is no test for it. Diagnosis depends on your symptoms and how they change over time. Don't be afraid to ask if your doctor is certain that you have Parkinson's. Ask why or why not.
Most experts suggest that you work with a doctor who is a neurologist. This doctor focuses on diseases of the nervous system, like Parkinson's. Also, the neurologist you select should be a movement disorder specialist who has training in Parkinson's disease.
If you have any doubts about your doctor or your diagnosis, get a second opinion. Your doctor should welcome a second opinion.
Ask your doctor to explain Parkinson's. In short, it's a disease that causes loss of brain cells that produce dopamine. That's a brain chemical important for movement. This happens gradually over time. As dopamine levels go down, symptoms increase. Keep asking for details until you understand the disease and what it does.
Figuring out why you have it, though, is not likely. That's because what causes Parkinson's is pretty much a mystery. Doctors do know that it's more common after age 60.
Also, if others in your family have Parkinson's, you might have inherited some genes that put you at risk. But genes alone are not the whole problem. Only about 1 in 4 people with Parkinson's has a family history of it. Doctors think the cause may be genes along with something in the environment that triggers the disease.
Even though you might not get a firm answer, you should talk about this with your doctor. It's a question most everyone has. It's worth discussing.
To diagnose Parkinson's, doctors look for at least two of these four symptoms:
- A type of shaking, called tremor
- A slowing down of movement, called bradykinesia
- A lack of balance, called postural instability
- A type of limb stiffness, called rigidity
Over time, you may develop all four. You may also have trouble with walking, talking and swallowing. People with Parkinson's also sometimes develop depression, skin problems, and constipation. They also may have trouble sleeping.
Ask what your doctor thinks you should expect, and when. Knowing what to expect will help you put a plan in place for the future.
Doctors have many good ways to treat Parkinson's. However, no drug will cure it. Treatment also won't change the course of the disease. Because of this, there is no rush to start treatment quickly. If your symptoms are manageable, you can wait.
The first question to ask your doctor about treatment is this: When should it start?
Then, you also need to ask about medication options. The drug used most often to treat Parkinson's is levodopa. It converts to dopamine in the brain. Doctors usually prescribe carbidopa along with it. Carbidopa makes levodopa work better. You can take these drugs together as one drug.
When talking with your doctor about medication, be sure to ask about these things:
- Will the drug help all my symptoms? Often a drug helps some symptoms more than others. For instance, bradykinesia and rigidity respond very well to levodopa. Tremor does not respond as well. You need to work with your doctor to find the drug that works best for your symptoms.
- Will I need to take more of the drug over time? That can happen. For instance, levodopa may become less effective as time goes on. Then, you would need to take a bigger dose.
- What about side effects? If dosage goes up, side effects often increase, too. Ask what side effects each drug has. At higher doses, levodopa can cause dyskinesia. That's uncontrolled and sudden movements.
What about something called "wearing off"? This is when the effect of a drug doesn't seem to last as long. Symptoms start to come back before it's time to take another dose.
These are all good questions. Your doctor's answers will help you understand your options. If you start with levodopa, for instance, but you experience wearing off or you have side effects, there are other choices.
Treating Parkinson's involves more than taking medicine. Ask your doctor whether any of these other treatments might help you:
- Speech therapy: This may improve speech and swallowing problems.
- Physical therapy: It helps maintain muscle strength. It will help with balance. And, it will help keep you flexible.
- Occupational therapy: This will help you function better at home and at work.
- Deep brain stimulation: This may help if you have very bad side effects from the drugs. The treatment uses electrical pulses to stimulate the brain. It works on the brain like a pacemaker works on the heart.
Your doctor may have only some of the answers to this question.
Parkinson's is a lifetime disease. It progresses over time. However, how it will affect any one person is anybody’s guess. Some people have mild symptoms and respond well to treatment. Others struggle more. You should know that Parkinson's is not fatal. However, complications from it can shorten a person’s life.
Keeping a positive attitude is important. So is learning as much as you can about the disease. Perhaps most important, though, is to find a good doctor to work with. When you find someone you’re comfortable working with, it’s easier to stay current with and stay focused on managing your condition.
You might want to ask your doctor if you could take part in a clinical trial. These trials offer the best chance of finding better treatments and maybe a cure for Parkinson's. Many trials look for people with Parkinson's who have not started treatment. Talk to your doctor about whether this would be right for you.