PARKINSON’S DISEASE

Parkinson`s disease is a brain disorder that leads to shaking, stiffness, and difficulty with walking, balance, and coordination.

Parkinson’s disease is both chronic, meaning it lasts for a long time, and progressive, meaning its symptoms grow worse over time. The cause of the disease is unknown and there is no cure at this point, but there are treatment options to manage its symptoms.

What caregivers should know about Parkinson’s Disease

• Estimates vary on the number of people who have Parkinson’s in the United States. The American Parkinson Disease Association notes that the disease affects more than 1.5 million. The Parkinson’s Disease Foundation puts the figure at “nearly one million,” while the National Institutes of Health set it at around 500,000, but does note that “the numbers may be much higher.” Whatever the total figure, all agree the number is growing, with approximately 60,000 new cases diagnosed each year.
• While “early onset” Parkinson’s can affect people under 50, the average age on onset is 60 and the risk rises significantly with advancing age.
• Men are nearly 1.5 times as likely to be affected than women.
• There are a number of medications that can be used to treat the symptoms of Parkinson’s. The most common are levodopa, usually prescribed in combination with carbidoba to prevent the side effects of nausea and vomiting, and dopamine agonists. The Parkinson’s Disease Foundation has an excellent breakdown of how those and other medications [PDF] used to treat the disease work and their potential side effects.
• There are also surgical procedures that can be used to treat the disease, most notably a process called deep brain stimulation. In that surgical procedure, electrodes are inserted into the targeted brain region and a device called an impulse generator is implanted under the collarbone to provide an electrical impulse to a part of the brain involved in motor function. The Parkinson’s Disease Foundation has guide to the issues involved in considering the procedure.
• According to the Parkinson’s Disease Foundation, the direct and indirect cost of Parkinson’s, including treatment, social security payments and lost income from inability to work, is estimated to be nearly $52 billion per year in the United States alone. Medication costs for an individual person with Parkinson’s average $2,500 a year, and therapeutic surgery can cost up to $100,000 dollars per patient.
• Parkinson’s is classified as a movement disorder. The disease’s four main symptoms are: 1. tremor,  or trembling in hands, arms, legs, jaw, or head; 2. rigidity, or stiffness of the limbs and trunk; 3. slowness of movement, which is called bradykinesia; 4. impaired balance, which is more formally referred to as postural instability
• Those symptoms usually begin gradually and get worse over time. As the severity of the symptoms increases, people with the disorder may have difficulty walking, talking or completing other simple tasks.
• Parkinson’s disease can also affect cognitive abilities. People with the disease experience non-motor, or movement, symptoms including mental and behavioral changes, sleep problems, depression, memory difficulties and fatigue.

What MetroWest caregivers should know

Help is close by. The American Parkinson Disease Association has a Massachusetts chapter located in Boston that states its goal as “support[ing] the national mission to ‘Ease the Burden and Find the Cure’ through education, program development, support group assistance, fundraising and community involvement.”

The APDA Massachusetts chapter can be contacted at:
72 East Concord Street, C3
Boston, MA 02118
Phone: 617-638-8466 or 1-800-651-8466
Email: information@apdama.org

Boston is also home to some of the top treatment and research facilities for Parkinson’s disease. That includes the Parkinson’s Disease and Movement Disorders Center at the Boston University School of Medicine, which has been designated an Advanced Center of Parkinson Research and a Parkinson’s disease Information and Referral Center by the APDA.

The Information & Referral Center was established in 1980 and serves as a resource for those with Parkinson’s disease and their loved ones as well as healthcare providers. Patients, caregivers, healthcare providers and the greater community can receive support regardless of their affiliation with Boston University Medical Center or any other medical facility.

Services provided by the APDA Information and Referral Center include:

• A telephone helpline (617-638-8466 or 800-651-8466)
• A comprehensive resource referral network
• Support group assistance
• Counseling and guidance
• Training and support for healthcare professionals

Massachusetts General Hospital also has one of the nation’s top research programs for Parkinson’s disease in Boston, while The Parkinson’s Disease Center of Central Massachusetts offers a wide array of services in Worcester.

Related information and additional web resources

There are many quality resources on the internet for information about the disease and how to care for someone affected by it.

• Parkinson’s Foundation – This is a good place to start, particularly its caregiving section.
• American Parkinson’s Disease Association – Features a Massachusetts chapter and has developed an extensive guidebook for Parkinson’s caregiver called, “Parkinson’s Handbook”.