JOHN BELL / DAILY RECORD
Roy Dodsworth of Flanders comforts Cookie, his wife, who suffers from ALS, also known as Lou Gehrig's Disease. A Novartis executive, he retired to be his wife's full-time caregiver. The couple wants to spread awareness of the effect the disease has on families.
Flanders woman, husband cope with ALS
Tuesday, June 26, 2007
Cookie Dodsworth of Flanders sits in a recliner rubbing her shih-tzu, Gizmo, with her right hand. It is a little movement and the only one the once vivacious woman has left. Lou Gehrig's Disease -- amyotrophic lateral sclerosis, or ALS -- has atrophied all her other muscles the past two years.
In ALS patients the motor neurons that deliver messages from brain to spinal cord to muscles degenerate and die. The unused muscles atrophy.
"After the muscles of the extremities go, the disease works on the diaphragm and the intercostals that help you breathe," said Roy, Cookie's husband and caregiver.
One morning in August 2005 her speech slowed, leading to the discovery of a polyp, removed that December by a Manhattan specialist. In the interim, she started dragging her left foot. Muscle degeneration had begun, though a local neurologist did not diagnose ALS until Jan. 13, 2006. Dr. Alan Pestronk, a world-class expert at Washington University in St. Louis, confirmed the diagnosis the following March.
The little speech Cookie had regained after the operation left her and she can no longer speak at all. She communicates with Roy by writing notes and now even that is in jeopardy.
"She loved to talk to people," Roy said. "Even the kids in the neighborhood would come talk to her."
In June 2006 Cookie gave up driving when her right leg atrophied and her upper body strength dipped. By September of last year, the once 170-pound homemaker and mother had dropped to 135 pounds and her lung capacity had dipped to 15 percent. The intercostal muscles were losing life. Last December, she lost use of her left arm.
This past February the swallowing muscles atrophied.
"We'd go to a diner and I'd mash up scrambled eggs and mix them with ketchup, and she'd take two hours to eat a few spoonfuls," said Roy, who retired early from his position as worldwide head of drug regulatory affairs at Novartis Neuroscience to take care of his wife.
Cookie's mouth is fixed in an open position. Her eyes darkened for a moment, an expression that means frustration. He kissed her hand and smoothed her hair.
"She is a wonderful woman and this is so unfair," he said. "Traditional medicine offers nothing."
He used his medical know-how to try alternative therapies -- a German respiratory drug that builds muscle and an IV detoxification aimed at regenerating neurons. No result.
Now Cookie, who is 65, weighs 85 pounds. She has a lung capacity below 10 percent and ingests food through a surgically implanted tube. Because she could not tolerate anesthesia during the April operation, she squeezed the anesthesiologist's hand when she felt pain. Then he upped her morphine.
Every three months she has a checkup at The Eleanor and Lou Gehrig MDA/ALS Research Center at Columbia Presbyterian Medical Center. Roy built an addition onto their home to give her a first-floor bedroom and bathroom. When the head restraint arrives for her wheelchair, he will take her outside to see roses and the mountain ridge and for rides in their specially equipped van.
But Roy Dodsworth knows he is powerless. He wishes most to hear Cookie's voice again. He wants her to tell him what scares her, so they could talk about it. But not even that is possible.
More: North Jersey ALS families can reach out to the Greater New York Chapter of the ALS Association at www.alsa-ny.org
. Its executive director, Jacqueline Reinhard, said the Department of Defense is spearheading ALS research since veterans of all wars of the past century have a 60 percent greater chance of getting the terminal disease than does the general public. Roy Dodsworth welcomes e-mails at firstname.lastname@example.org
"Human Interests" appears every Thursday and other days of the week from time to time. In each column Lorraine Ash explores interesting angles on local life that may otherwise escape attention. Reader mail is welcome at email@example.com