Online Health Chat with Kristin Appleby, MD
November 8, 2013
Parkinson’s disease is a chronic progressive neurological disease that affects nerve cells (neurons) in an area of the brain called the substantia nigra, which is part of the basal ganglia. The basal ganglia are responsible for organizing motor commands from other parts of the brain. The disease causes these neurons to die leading to a loss of dopamine in the brain. The lack of dopamine causes patients’ body movements to be slower and lesser, with increased muscle stiffness. The major symptoms of this disease include the following:
- Muscle stiffness (rigidity)
- Tremors of the hands at rest
- Bradykinesia (the slowing down of movements and the gradual loss of spontaneous activity)
- Changes in walking pattern and posture
- Changes in speech and handwriting
- Loss of balance and increased falls
Approximately one million Americans have Parkinson’s disease. The average age at the onset of symptoms is 60 years old, but 10 percent of patients are diagnosed before the age of 40 years old. Men who are older than 60 years of age are more likely to develop the disease than women. There is increasing evidence that this disease may be inherited in combination with environmental risk factors.
Parkinson’s disease and/or its treatment can cause non-motor symptoms including mental disturbances, such as hallucinations, delusions and paranoia. For most patients, these mental disturbances can be controlled by changing their Parkinson’s treatment from one medicine to another, or treating patients with anti-psychotic medicines.
Sleep problems associated with Parkinson’s disease include an inability to fall asleep, difficulty staying asleep, uncomfortable sensations in the legs at night, nightmares, acting out of dreams that may lead to accidents or injuries, and daytime drowsiness. A patient who experiences these symptoms should never take over-the-counter sleep medicine before consulting his or her doctor. Some medications can cause or worsen sleep problems. Sleep disturbances can also cause depression, which can bring on fatigue, a changed level of physical and social activity, and a tendency to not sleep soundly or not at all.
Dysarthria (difficulty speaking) and dysphagia (difficulty swallowing) can be severely limiting symptoms of Parkinson’s disease. Speech impairments might include hoarse or strained voice, muffled or nasal-sounding voice, and unclear or slurred speech. Referral to a speech therapist experienced in administering the Lee Silverman Voice Therapy Program can be helpful.
About the Speaker
Kristin Appleby, MD, is a staff neurologist in the Center for Neurological Restoration at Cleveland Clinic’s Medina Hospital and Main Campus. She is board certified in neurology. Dr. Appleby completed her fellowship in movement disorders and residency in neurology at Georgetown University, in Washington, DC. She completed her internship in medicine at Washington Hospital, in Washington, DC, after receiving her medical degree at Georgetown University School of Medicine, in Washington, DC. Dr. Appleby has many specialty interests including Parkinson’s disease, dystonia, essential tremor and movement disorders.
Let’s Chat About Non-Motor Aspects of Parkinson’s Disease
Diagnosis: Signs and Symptoms
clara: What are the early signs of Parkinson's disease (PD)? Can it progress quickly, or is it usually slow? Should one be treated early?
Kristin_Appleby,_MD: Examples of early signs would be tremor at rest in one hand, subtle slowing of walking, and reduced arm swing in one hand while walking. Other symptoms that can happen with problems other than PD but are 'red flags' that someone may be developing PD are acting out of one’s dreams (talking, fighting and running), constipation and reduced sense of smell. Constipation and reduced sense of smell can happen with many other conditions though. PD generally progresses slowly. If there is quick progression, then a PD diagnosis may be wrong or there may be another problem additionally. As far as early treatment, there is disagreement among neurologists who treat movement disorders. Some would say treat when symptoms are bothersome. Others would say treat as soon as diagnosed—even if symptoms are not affecting daily life. I am in the early treatment camp. There is data that in the long run it is better to treat as early as possible.
Selina: Beside having difficulty staying asleep, I occasionally experience leg-jerking when I lie down to sleep. In the morning I experience a tingling and numb sensation on the left side of my back. Is this part of Parkinson’s disease (PD)?
Kristin_Appleby,_MD: The leg jerking could be restless legs syndrome, which is common in PD. People can also have leg jerking while they are asleep, which is called PLMS (periodic limb movements of sleep), and is also common in PD patients. The tingling sensation in your back could be PD or arthritic changes in your spine. If it gets better after taking your morning PD medications, then it is more likely to be PD. If you have not had your back checked by a physician, I would start there.
ICPT: The movement disorders neurologists whom I have seen cannot agree if my diagnosis is essential tremor (ET) or Parkinson’s disease (PD). I am presently taking Mirapex® (pramipexole) 0.125 mg four times daily. This does not appear to diminish my tremors in my right arm and right leg. I am 75 years old, and have had tremors for approximately 10 years. My mother had PD, and my grandmother and her sister had ET (with head and voice tremors.)
Kristin_Appleby,_MD: This is a common scenario for movement disorders neurologists. The PD tremor is mainly when the hands are at rest and when in a holding posture such as when a patient is holding a book. The ET tremor is when the hands are being used such as when drinking from a cup or eating. Some people with ET have a rest tremor, too, and that is where the confusion comes from. It is helpful to ask and examine the patient regarding other symptoms and complaints that are associated with PD to help figure out what the diagnosis is. Some people have both ET and PD. There is a newer imaging study available called a DaTscan that can help distinguish between ET and PD. A normal result would mean you have ET. If it is abnormal, then you could have PD or both ET and PD.
destinyh: What percentage of Parkinson's disease patients will have dementia?
Kristin_Appleby,_MD: It depends on what study you read. I recently read an article that gave 20 to 30 percent as an answer. Others say more than that and are probably more accurate.
mecw: My husband was diagnosed with Parkinson's disease (PD) earlier this year. His left hand shakes and sometimes his mouth quivers. This has improved with medication. He says that he also feels very nervous inside, like his stomach is shaking. Is this another side effect of PD?
Kristin_Appleby,_MD: This is a common symptom of Parkinson's disease. Many PD patients have been at least mildly anxious for several years or more. Starting treatment for PD often helps this. This feeling your husband is experiencing also could be an internal tremor. Many PD patients feel there is a tremor on the inside, but it is not visible. Either of these could be the cause.
Parkinson’s Disease Testing
mleland: You mention a DaTscan, as a new imaging approach. Is a PET scan useful in anyway for identifying PD and differentiating it from other disease processes?
Kristin_Appleby,_MD: We do not generally use PET scans for Parkinson's disease.
Physical, Occupational and Speech Therapies
jab52: Are there benefits of physical, occupational and speech therapy in the treatment of Parkinson's disease (PD)?
Kristin_Appleby,_MD: Definitely, in fact it is a vital part of treatment of PD. Anytime a PD patient asks to have physical therapy (PT), I send them. I generally start sending a PD patient to PT when the gait becomes more unsteady, and it appears as if he or she is becoming at risk of falling. Physical therapy with a therapist experienced with PD patients can significantly improve the walking and prevent falls. Speech therapy can also improve the hypophonia (soft voice) due to PD. Difficulty swallowing is also a common problem with advancing PD. This puts people at risk for aspiration (food going down into the lungs), which can cause pneumonia. Speech therapists are vital in assessing swallowing ability and safety. They also make recommendations on dietary changes to improve safe swallowing. Occupational therapists can be very helpful in making the home environment safer—making recommendations for grab bars and other assistive devices to prevent falls and other injuries. Your doctor can order a home safety evaluation and the occupational therapist will come to your home to assess it.
Parkinson’s Disease Medications
salkos: I am an 81-year-old female who was diagnosed with moderate Parkinson’s disease in May. I started taking Sinemet® (carbidopa-levodopa) 25-100 mg immediately, starting with half a tablet three times daily, and increasing the dosage every several weeks. I am now taking two tablets three times daily for the past week. Will I every regain the strength, energy, posture and walk that I once had? I have lost my strength and energy. My posture is slightly forward with a short slight shuffle. What is the best outcome I can expect? Will the medication, in time, run its course where it may not be effective?
Kristin_Appleby,_MD: This is a very tough question to answer without seeing you because there are so many variables. Parkinson's disease patients typically improve significantly once they start taking Sinemet®. The amount of improvement depends on the person and the severity of the symptoms before he or she starts taking Sinemet®. Many, but not all, people with mild to moderate Parkinson's disease who start Sinemet® can improve to 90 percent or more of their normal level of function. You should improve substantially, but I would not expect full resolution of the Parkinson's symptoms from Sinemet®—though it can happen. At 81 years old, you may have other medical issues that could contribute to your symptoms, such as arthritis, spinal stenosis, neuropathy, and so on. You may need a higher dosage of Sinemet®. You may benefit from a course of physical therapy from a therapist experienced with Parkinson's disease patients.
destinyh: Do all medicines for Parkinson's disease (PD) eventually fail to control symptoms?
Kristin_Appleby,_MD: Since PD causes degeneration of the brain—eventually there is enough damage from the disease that the medications do not work anymore. Sinemet® (carbidopa-levodopa) is the most potent medication we have for PD. Ultimately all PD patients will take it. At the later stages of PD, the other medications cause too many side effects such as hallucinations or lightheadedness. Only some Parkinson's symptoms improve with Sinemet®. There are many other symptoms that do not improve with Sinemet®, and these become more predominant and bothersome the longer one has had PD. These are the nonmotor symptoms, such as constipation, cognitive changes, sleep disorders, depression and anxiety. In the later stages, it is these symptoms that impact a PD patient's quality of life the most.
mleland: My husband is on Stalevo® (carbidopa, levodopa and entacapone), which causes the urine to be dark orange. What is in the drug that causes the color change? Or is it related to the dye used to coat the caplet?
Kristin_Appleby,_MD: It does cause the urine to be dark orange. It can do the same thing to tears and saliva! I admit I have no idea why! I can think of two other medications for conditions other than for Parkinson’s disease that do the same thing. I would not think it is the coating of the caplet, since that could probably be changed. My best guess is it is the medication itself.
Medication Side Effects
Nelly: I am a 72-year-old male, diagnosed with Parkinson’s disease about one year ago. I take both Sinamet® (carbidopa-levodopa) and Lexapro® (escitalopram oxalate) for mild depression. My most troubling symptom is sleep. I regularly sleep 10 hours at night, and then take an hour nap in the afternoon. The sleep is sound and pleasant. I don't have sleep apnea. I just sleep so much I can't get much done each day. Do you have any ideas?
Kristin_Appleby,_MD: This is probably a combination of the disease itself, possibly the effects of Sinemet®, also possibly depression if is not controlled, and other medications you may be taking. You say you do not have sleep apnea, but if you have not had a sleep study it would be a good idea to have one. You can try exercising. Some movement disorders neurologists give Provigil® (modafinil) or Ritalin® (methylphenidate hydrochloride) to help with fatigue.
Exercise for Parkinson’s Disease
Lynn6711: I have seen information on the Theracycle™ and how daily use counteracts the symptoms of Parkinson’s disease (PD). Do other forms of exercise, such as a standard stationary bike, yoga and martial arts, have similar effects?
Kristin_Appleby,_MD: I encourage my PD patients to be as active as possible. The next question is, “What should I do?”' My answer is whatever you will enjoy and stick with. Children do not exercise, they play. If you can find a physical activity that is more like play than work, then ultimately you will keep doing it. There have been studies proving that stationary bike exercise, like the Theracycle™, which provides no resistance and is high speed, can improve walking in PD patients. Tai Chi has also shown benefit for balance. Ballroom dancing, specifically the tango, has also shown benefit. This is not to say other ways to exercise are not helpful, they just have not been studied or they were not able to show a benefit.
Research and New Therapy
destinyh: What are your thoughts on the Parkinson’s disease (PD) medication that is fed into your stomach via a tube?
Kristin_Appleby,_MD: For those who have not heard of this, we are talking about a levodopa gel that is infused into the intestines by a pump continuously through the day. It is new and at this point only available in the U.S. through a clinical trial. It is not FDA approved. It has been used in Europe for at least a few years.
Like all PD treatments, it is great for the right person. Parkinson’s disease symptoms need to be severe enough that the risk and complications of this are worth the benefit. Typically this means the PD medications are wearing off frequently and symptoms are not able to be controlled by pills. This is also part of the criteria we use to evaluate if someone is appropriate for deep brain stimulation (DBS). The levodopa gel is good for someone that is not a good surgical candidate for DBS, is afraid of having DBS, or possibly has dementia that would make him or her a poor DBS candidate.
Diagnosis of Other Neurological Diseases
gigi: I have symmetrical neuropathy in my hands. What tests should I have done for a diagnosis?
Kristin_Appleby,_MD: You should be evaluated by a neurologist. He or she may order a nerve conduction test and EMG to document the extent of the neuropathy. A few possibilities this test may find are carpal tunnel, pinched nerves at the neck or evidence for a more widespread problem affecting all of the extremities. Further testing would depend on this result.
Delray: Is cervical dystonia the same as Parkinson’s disease (PD)?
Kristin_Appleby,_MD: Many people with PD have cervical dystonia, but having cervical dystonia does not mean you have PD. People with cervical dystonia have an increased risk of developing PD, so I do watch my cervical dystonia patients for other PD symptoms over time.
Moderator: I am sorry to say that we are at the end of our chat. We appreciate your participation and hope you will join us for other chat topics in the future. Thank you, Dr. Appleby, for sharing your expertise and answering questions today about non-motor aspects of Parkinson's disease.
Kristin_Appleby,_MD: Thank you very much for your questions today.
To make an appointment with Kristin Appleby, MD, or any of the other specialists in Cleveland Clinic’s Center for Neurological Restoration, please call 216.636.5860 or call toll-free at 866.588.2264.
For More Information
On Parkinson’s Disease and Young-Onset Parkinson’s Disease
Young Onset Parkinson’s Disease
The average age at which Parkinson’s disease is diagnosed is 60. However, roughly 10 to 20 percent of those diagnosed with Parkinson’s disease are under age 50, and about half of those are diagnosed before age 40. When the diagnosis is made early, it is referred to as young onset Parkinson’s disease. Often, young onset patients face challenges different from those that confront patients diagnosed in their 60s and 70s. If you are someone with young-onset Parkinson's disease, Cleveland Clinic’s Northeast Ohio Young Onset Parkinson’s Support Group might be for you. Learn about Parkinson’s disease treatment, news and research while connecting with other young people who understand the challenges first hand. All meetings are held the second Tuesday of the month from 7:00 to 9:00 p.m.in Beachwood, Independence or Strongsville. For questions about our Northeast Ohio Young Onset Parkinson’s Support Group, call 216.444.8860 or email us at firstname.lastname@example.org.
On Cleveland Clinic
Cleveland Clinic’s Center for Neurological Restoration is among the first in the world to bring together an interdisciplinary team of renowned neurologists, neurosurgeons, psychiatrists, neuropsychiatrists, researchers and other specialists who offer the latest medical and surgical treatments for patients with neurological and psychiatric disorders. The center focuses on advancing treatment through ongoing basic and clinical research. It is recognized for expertise in medical management and innovations in the surgical treatment of movement disorders and psychiatric disorders.
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