A senior neurologist explains which symptoms mean that your Parkinson’s disease is advancing, and how an accurate diagnosis and appropriate treatment will enhance your quality of life and enable you to function as much as possible with this disease.
A woman, C, has been treated at my clinic for several years with a diagnosis of Parkinson's disease. She still works as a manager in a large company, suffering from tremors when she rests her right hand, along with stiffness and slowness, which gradually spread over about 10 years to her left side. In the last year she has started to suffer from falls. She notes increasing difficulty in managing the company, which manifests itself in ADHD-like symptoms and problems with her short-term memory. The time in-between doses of medication she takes to alleviate symptoms is getting shorter and now she needs five doses a day (every 3.5-4 hours). In addition, side effects of involuntary movements occur for several hours every day.
Does C meet the criteria for advanced Parkinson's disease? How can one decide where to put the thin line crossing between a patient who has developed Parkinson’s and one who is an advanced patient?
The answer to this is complex.
Due to disputes among international experts in movement disorders on the definition of advanced Parkinson's disease, and due to a lack of a biological marker such as a blood test or imaging test that "marks" the transition to the advanced stage, a limited number of experts from around the world gathered to discuss how to define advanced disease. At the end of the process, it was determined that a person with advanced disease is defined according to the following criteria, although it’s not necessary to meet all of these criteria to be considered in an advanced stage.
1 - Motor volatility symptoms
Motor volatility during the day (frequent switching between states of the pill alleviating symptoms or when there is no effect of the pill on the symptoms); involuntary movements (dyskinesia) that interferes with over one hour a day if there are two hours of symptoms per day and needing five doses of budopa-based drugs (which turn the brain into dopamine - a neurotransmitter associated with movement) per day all mean that the Parkinson’s disease has progressed.
2 - Non-motor symptoms
Mild cognitive decline or hallucinations are another sign the disease has progressed.
3 - Functional disorder
Recurrent falls or difficulties in performing routine daily tasks is a final sign of advancement.
Diagnosis of advanced-stage Parkinson's is crucial, due to options available to patients at these stages, and the need for intervention as early as possible to prevent further secondary complications and to improve quality of life.
What treatment options are available to those dealing with advanced disease?
1 - Drugs
First, one should try to find effective drug treatment, including combining several drugs, dividing the doses into an increasing number of times a day and increasing the amount of medication in each dose.
2 - Surgery
There are three approved treatments to treat advanced-stage Parkinson’s which are provided by Israeli health funds.
One treatment option is surgery to implant electrodes for brain stimulation to the areas of movement control in the brain, which is called deep brain stimulation. This procedure is performed in an increasing number of centers in the country. After the surgical procedure, the patient arrives at an institute that treats Parkinson's and undergoes a procedure to calibrate the electrodes, until optimal therapeutic efficacy is reached. It will be monitored regularly over the years and doctors will decide to make changes depending on the progress of the disease and the side effects.
3 - Levodopa gel
Another treatment is administration of levodopa in gel form by means of an external pump directly to the intestine through a tube inserted through the skin and stretched across the stomach. It replaces the need for pills, helps in optimal absorption of the drug, and in combination with regular infusions, produces blood dopamine levels in the brain that are stable throughout the day. This significantly improves the side effects of treatment and also increases the effectiveness of treatment in achieving better quality of life and improved daily function.
4 - Apomorphine
Third is a subcutaneous pump, which continuously infuses apomorphine (a molecule that binds to a dopamine receptor in the brain and activates it), thus helping to improve the symptoms of advanced disease, in parallel with continued drug treatment.
All treatments are effective, safe and have been used with thousands of patients.
The decision on the appropriate treatment is individual and should be made as part of a joint decision of the patient and doctor. Knesset member Miki Eitan, thanks to DBS surgery, has significantly improved his life, even after developing advanced Parkinson's. So, the advanced treatments give hope for continued good quality of life among those dealing with the disease.
Beyond the advanced treatments, it's crucial to diagnose an advanced patient to provide the necessary support from the immediate family. Outside sources, including the patient’s community and health fund that provides medical services, including complementary medicine and rehabilitative treatment, social workers and the Israeli Parkinson's Association should also all be leveraged.
Dr. Saar Anis is a senior neurologist and specialist in movement disorders at the Institute for Movement Disorders at Sheba Medical Center at Tel Hashomer. This article was written in cooperation with the Israeli Parkinson’s Association. It first appeared on the Jerusalem Post's sister site, Walla!