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Mid-Stage Parkinson's: Managing the Movement Symptoms
Like most aspects of Parkinson’s disease (PD), the “mid-stage” is very individualized. During this phase, symptoms become less easy to suppress using medications, and new problems, some related to PD and others provoked by the medications themselves, may develop. The term mid-stage has more to do with these changes than it does with the length of time since diagnosis. Some people experience mid-stage issues soon after diagnosis, while others may not encounter them for five or more years.
In this article, the first in a series of four, we discuss the impact that mid-stage PD has on your movement symptoms and ways you can address them.
Movement Symptoms of Mid-Stage PD
In mid-stage Parkinson’s, your medications may begin to “wear off” substantially before it’s time for the next dose, leading to “off” periods, which occur when the beneficial medication effect quickly drops off. When this happens, movement symptoms that formerly remained hidden for hours, such as tremor or stiffness, may become more troublesome than they were in earlier years.
Mid-stage often includes the onset of dyskinesias. Dyskinesias are involuntary writhing movements that are caused by dopamine medications, and tend to occur at the peak of the medication effect and taper off when the medication effect wanes. Many people experience both “on-off” fluctuations and dyskinesias: when their medications are working, they are mobile but experience dyskinesias, and when their medications wear off, dyskinesias subside, but Parkinson’s symptoms are more pronounced.
Dystonia — an often painful, sustained cramping and twisting motion — can be provoked by medication, but more likely occurs in the “off” unmedicated state. A common form is toes that curl under or upwards, often first thing in the morning.
Two additional symptoms are important to address because they can increase the risk of falls. The first is postural instability, or impaired balance and coordination. The second, freezing, happens when a person feels stuck to the ground and finds it difficult to start walking. It often occurs when a person launches forward after rising from a chair, after he or she is standing still, or while walking, in which case the body continues its forward motion, but the feet stay planted.
Tips for Managing These Symptoms
Manage Your Medications
The first step in addressing mid-stage movement symptoms is to ensure that your medications are well managed so that they last longer, symptoms are better controlled and dyskinesias are minimized. Unfortunately, postural instability and freezing do not respond to most available medications, and supplementary strategies involving physical therapy and fall prevention are needed.
The timing of medications can impact how you feel, so a key part of good management is sticking to a schedule. It is also a good idea to go through a complete list of symptoms and problems with your doctor, and to be certain about the role, dosage and timing of medications. If your symptoms fluctuate, it is helpful to keep a detailed record of your response to medications throughout the day, indicating meals, sleep and daily activities, for one week prior to your next appointment with your doctor. Some neurologists and support groups have preprinted sheets for you to use. Doctors use these reports to make informed adjustments, e.g., adding a new class of medications or adjusting the dosages or timing of them.
Work with a Physical Therapist
For postural instability, it may be helpful to work with a physical therapist (PT). With a referral from your neurologist, a PT can perform an evaluation and develop a program that may include fall prevention, balance training and the proper use of assistive devices such as canes or walkers.
Break Your “Freeze”
There are a few strategies that may help with freezing. Try marching in place until you feel the freeze breaks. Rocking side to side can also be effective. Another tip is to try singing out loud — preferably a song with a marching beat. Lastly, some people find that if they drop a string or piece of paper on the floor, and then step over it, this can break the freeze. Different tips may work at different times. So, if one doesn’t work, try another.
Seek a Second Opinion
Don’t be afraid to seek a second opinion from a movement disorder specialist (MDS), a doctor who specializes in Parkinson’s. If you are already being treated by one, another may offer fresh insight. PDF’s helpline staff — available at (800) 457-6676 — can help you locate one who is close to you, where available.
Talk to Your Doctor about DBS
When you or your loved one has tried these solutions and problems persist, it may be time to consider deep brain stimulation surgery (DBS). DBS is not for everyone, but recent research indicates that when it is done on appropriate candidates, it offers symptom control superior to that which is obtained with the best medication management. (See PDF’s booklet: Deep Brain Stimulation for PD.)
These are just a few ways to cope with the motor challenges of mid-stage PD. In future issues, we will examine additional aspects of the mid-stage Parkinson’s experience.