From one to 10, 10 being the highest, how do you rate your quality of life (QOL)? Before you answer that, you have to figure out what the phrase “quality of life” means to you.
Put down your Webster’s
Patricia O’Connor, the nurse case manager for the Forbes Norris MDA/ALS Research Center at California Pacific Medical Center in San Francisco, defines QOL as the meaning and satisfaction that an individual derives from his or her life.
|Darlene Bates and granddaughter, Noah Boston
“I’ve seen many, many patients who would all define the quality of their life to be exceedingly different from each other,” says O’Connor, who’s been at the ALS center for nine years.
Found to have ALS in November 2001, Darlene Bates uses a power wheelchair with a head control device and an augmentative communication device, and says that having a high QOL means being able to enjoy her grandchildren and playing computer games, which she can do by using a head control mount.
Bates, 58, divides her time between Edmond, Okla., and Unionville, Va., staying with her two daughters and their families.
Edmond Sistek of Pikesville, Md., who was found to have ALS in June 2003, says that living with his partner of 10 years, Harriet Rosenthal, makes his QOL skyrocket. Sistek, 69, who walks with a cane for balance and has limited arm, hand and shoulder strength, retired at age 62 from teaching math and driver’s ed to at-risk youths.
Other things that add to his quality of life are babysitting his two grandsons and going to their soccer games. Sistek also enjoys going to the horsetrack every week.
“There’s nothing a gambler enjoys more than the hope that he’s going to win,” Sistek says. “Every day that I go to the racetrack, I enjoy eight races. I know for a fact I’m not going to win all eight, but the fact that I may win three or four is what makes me go back.”
The eye of the beholder
Often when QOL studies are conducted, the main concern is what physical capabilities you possess, says O’Connor. For example, if you can’t eat independently, the studies score you low on that account. You get another low score for not being able to walk.
“The scores can look like people have an awful QOL. Well, anyone who has been working in the ALS community knows that that is poppycock. The people MDA studies do not define themselves by their physical abilities,” she says. “Other studies, including MDA studies, have shown over and over that even people who are extremely disabled can see themselves as having an excellent QOL.”
John Sandner, who received a diagnosis of ALS in March 2001 and uses a power wheelchair with a sip-and-puff device, lives with his wife, Cheryl, in McFarland, Wis. With the help of a friend, Howard Davis, who has quadriplegia due to a diving accident, Sandner, 59, realized early on that he had more control over his life than he originally thought after his diagnosis.
|John and Cheryl Sandner (center) and friends (including a bust of Nelson Mandela)
“When this disease started, Howard said to me, ‘Think of the things you can do, John, not the things you can’t do,’” Sandner says. “Whenever those thoughts about, ‘Hey, I’d really like to go bicycling or canoeing or playing basketball’ start to depress me because I can’t do that, I think about the things I can do, which is talk to my friends and enjoy time with my family.”
Having 11 grandchildren makes for an adventurous lifestyle for Sandner.
Cheryl reveals that Sandner’s sense of humor and positive attitude help improve his QOL, and that friends are always over because he’s so much fun to be around.
Loss of independence has a huge impact on QOL, and that’s something people rarely have control over. Finding ways to do as much for yourself as possible can help you to keep your QOL intact.
Bates was extremely frustrated when she had to wait for someone to push her manual wheelchair, but with her head control device and power chair, she can go where she wants, whenever she wants and at the speed she desires.
Change in definition
“What I’ve seen of people with ALS who have a deterioration of their physical abilities over time is that what is important at one point in their illness is less important at another time,” O’Connor says. “Early on in the disease process, work may be very important and doing a good job helps to define QOL. Later on, work will define a person less, give less satisfaction, but their family may become most important.”
When Sandner retired from teaching business management at Upper Iowa University in Fayette in 1998, he and Cheryl became involved with their MDA/ALS support group, helping their “community” by sharing their experiences and tips for living with the disease.
Sandner says that having a purpose makes his QOL much higher. The couple recently spoke to a group of sixth-grade students about living with ALS.
“The hardest thing to witness is someone who is less strong than she once was but continues to define her QOL by her ability to ski,” says O’Connor. “She can be miserable because she’s unable to ski, but in my experience, eventually almost everyone begins to have different priorities over time.”