Family Life Magazine on Parkinson's Awareness
Jamie Lober interviews Lolly Champion, PASB Board Vice President
Feb. 28, 2014: The first step to fighting Parkinson’s disease is to let others know that it exists. “Every nine minutes in this country someone is diagnosed with Parkinson’s and the average diagnosed age is between 50 and 60 years old,” said Lolly Champion, member of the board of the Parkinson’s Association of Santa Barbara. Since there is a large retiree population here and many others are lifelong residents, Parkinson’s is a very real issue. “We have unfortunately seen a big growth in the needs of people in this community,” said Champion.
The biggest thing you can do is know the symptoms. “The usual sign that people get is their hands begin to shake and fingers tremble,” said Champion. Acting early can ensure a better outcome. “We suggest that the minute you have any type of suspicions that you see a neurologist,” said Champion. It is possible to cope and have a good quality of life in spite of Parkinson’s. “The sooner you understand and accept your diagnosis and begin a program combining the best of medications, family acceptance and your acceptance, regular specific types of exercise and social interaction, you can delay progression for many years,” said Champion.
The toughest part about Parkinson’s is that there is no prevention and there is no cure, which makes it difficult to diagnose. There is no blood test, CT scan or MRI. “It is diagnosed by anecdotal observation and by other tests that rule out other possibilities of different types of illness or disease,” said Champion. When talking to a child or grandchild about Parkinson’s, make sure you do it in a way that is open, factual and age-appropriate. “It can be explained that there is something that happens that is not totally understood in the brain that causes the most obvious symptoms of tremors, but they are not painful,” said Champion.
Parkinson’s is progressive but the people who do well continue living their lives as they normally would. “If you exercise and are socially active it can slow the progression,” said Champion. A key message is that people with Parkinson’s are just like anyone else except they have this condition. “People that have Parkinson’s still continue to love their families and want to be involved and active members of their community, but they have new limitations that they have to learn to work around and their family has to learn to help them with,” said Champion. Nobody should take on Parkinson’s alone. “When someone is diagnosed, it is a family diagnosis,” said Champion.
The entire family can be involved. “There are support groups and exercise classes called Move to Connect because one of the offshoots of Parkinson’s is losing the ability to have good muscle control,” said Champion. The care is individualized based on stage and if there are underlying medical factors like diabetes, a heart condition or if the person is just fine otherwise. Becoming educated can make a difference as there are ways to be accommodating. “We teach families and the people with Parkinson’s not to order difficult foods when going out, like soup or spaghetti, and to stick with finger foods or sandwiches because they are easy to accommodate,” said Champion. If you are pouring a drink for someone with Parkinson’s, do not fill it right to the top. “A straw is always a good thing,” said Champion. Plan ahead. “Give yourself extra time to bathe and dress because you have to think about every movement,” said Champion.
Determine if there are any tools around the home that can make things easier for you. “Get Velcro for your shoes and give yourself plenty of rest before you go somewhere socially so you are not fatigued,” said Champion. Spending time as a family is important. “Your medication has to be timed carefully,” said Champion. Depending on when you take it, it can be more or less effective. “We suggest that family members go to all doctors’ appointments so they understand everything about the disease,” said Champion. Inquire if there is anything you can do around the house to improve safety. “We suggest that you talk to therapists about when to start using a cane so you do not have a fall, about putting bars in your bathroom or hallway and about making getting in and out of the car easier,” said Champion. There may be walkers, risers, shower seats or other items that can be loaned to you if you are unsure as to whether or not it may help.
Taking good care of yourself is crucial. “Someone with Parkinson’s does not have the same ability with their immune system to fight any other diseases,” said Champion. If a healthy person gets the flu, they can rest, drink juice and get better, whereas for someone with Parkinson’s it is not as easy. “Someone with Parkinson’s has underlying issues that affect the whole body that you might not see on an everyday basis,” said Champion. It makes someone more susceptible to other incidents because it makes things harder on the body. While there is a rather low genetic predisposition, some people may be more prone to getting Parkinson’s than others. “We are finding toxicities to toxins that are used for agriculture, people coming back from Vietnam and who worked with chemicals in metal industries and people who lived in areas that have been close to manufacturing and farm workers having a higher incidence of diagnosis,” said Champion.
There have been some recent advances in the management of Parkinson’s. “There is a procedure that started at the beginning of the 2000 millennium called DBS, or deep brain stimulation, where some wires are put in the brain that help control tremors,” said Champion. Some of the biggest champions in Parkinson’s research are right here in California. “UCLA is doing some of the most far-reaching work in the nation and internationally and Cottage Rehabilitation Hospital works with people with Parkinson’s on how to better maneuver living with the condition,” said Champion. With a proper education on the condition and the right tools and support, you can lead a productive life with Parkinson’s.
Jamie Lober, author of “Pink Power,” is a freelance writer on health promotion and disease prevention and can be reached at firstname.lastname@example.org