Notes From Youville: Understanding Parkinson's Disease

Since last year, Youville House Assisted Living in Cambridge has been coordinating the only Parkinson’s support group in the city.  Ildiko Szabo, Director of Community Life at Youville House, played a leading role in establishing the group after a number of residents remarked to her that they would benefit from group support.  “The Parkinson’s support group could not have happened sooner,” she says. “We have noticed that a growing number of people seem to be struggling with the effects of Parkinson’s, both within the Youville community and in the larger Cambridge area.”   

People with Parkinson’s seek out support for good reason: they confront chronic physical symptoms that become increasingly difficult as the disease progresses.  The physical symptoms are often accompanied by feelings of frustration, depression or exhaustion. Support groups provide a setting where people can manage these feelings, and can be a resource for education, information and communication with others who know what it’s like to have Parkinson’s.  

An internet writer named Bev Ribaudo has characterized her own experience with Parkinson’s as a communications problem, in which the brain is saying one thing but the body is doing something else.  She has shared her insights online, on the Parkinson’s Disease Foundation website (www.pdf.org). She compares Parkinson’s to the squirrel that sabotaged her friend’s car in high school.  “This car seemed to have a mind of its own,” she writes. “One day, you would turn on the radio and the headlights would come on. The next day, you would turn on the wipers and the horn would blow or the turn signals would come on.” Her friend eventually discovered seeds on the floor of the car, leading to the discovery of the squirrel that had been nesting behind the dashboard and and wreaking havoc on the wiring.

Just like the high school friend whose car kept acting up, people with Parkinson’s are often unsure what to expect on a daily basis: will they be able to make the walk to the convenience store? When they get there, will they be able to articulate what they are looking for?

An Overview of Parkinson’s
Parkinson’s is a progressive neurological disease caused by the loss of nerve cells in the brain and resulting in a decrease in the production of dopamine.  Without adequate dopamine, the brain loses its ability to control muscles and regulate movement.   Parkinson’s affects one million Americans and around 10 million people worldwide. 

Unfortunately there are few known risk factors.  Age plays a role, with most people contracting the disease in their 60s or older, although some people contract it at a younger age.  Males are slightly more likely to have Parkinson’s than females, and there is some evidence of genetic risk factors.  Otherwise, little is known about what causes the disease or how we can prevent it.  Symptoms vary and can be difficult to recognize.  In the early stages they can be too mild to notice, and even after they progress they can be confused with other conditions.  Symptoms can be treated and alleviated through medication, group support, specialized physical therapy and a variety of exercises.  

Common Symptoms Associated with Parkinson’s
• Tremor: This is often the earliest sign of Parkinson’s. Approximately 70   percent of people first experience slight shaking in a hand or finger on one     side of the body. The tremor may spread to both sides of the body in later   stages of the disease.

• Slowed movement: Movements that were once automatic, such as taking   a step forward or getting dressed, become more difficult and require   deliberate effort.  Even facial expressions like smiling may require a great   deal of effort.

• Festination:  This is an accelerated gait, characterized by short, shuffling   steps. 

• Rigidity: Muscles can stiffen and become difficult to move. Stiffened leg   muscles can impede taking steps forward.  A person with Parkinson’s may   not be able to swing their arms while walking.

• Postural instability:  Loss of control over muscle movement leads to a lack   of balance and an increased risk for falls. People with Parkinson’s are   especially at risk for falling backward.  Physical exercises that strengthen   muscles and improve balance are recommended to increase personal   safety. 

• Speech Problems: Speech alterations affect almost 90 percent of people   with Parkinson’s.  Neurological changes in the brain make it difficult to   speak loudly, to intonate, and to articulate words clearly. Speech therapy    can help Parkinson’s patients improve speech and regain confidence in   their communication abilities.  

While there is not yet a cure for Parkinson’s, millions of dollars are invested each year in learning more about effective treatments for this elusive disease.  Specialized voice treatment is available for those experiencing speech problems. Physical therapy and the regular practice of Tai Chi and dance have been found to improve postural stability and reduce falls.  For more information on the latest Parkinson’s research, or to find out how you can help in the search for a cure, visit www.pdf.org or www.adpaparkinson.org . 

The Parkinson’s support group at Youville House meets every third Tuesday at 3:00 PM.