Living in a different world

etting off the elevator on the sixth floor of the University Good Samaritan Center is like entering a different world.
The sporadic, anxious yells and the quick, jerky movements of the residents might scare visitors away at first. But after the senses become numb to the unusual expressions and the disjointed gaits, the shadows of the patients’ former selves appear.
The residents of the center’s sixth floor have Huntington’s Disease.
Huntington’s is a genetic neurological disorder that causes the brain to deteriorate over the course of several years. This breakdown causes a progressive loss of communication and bodily control. The condition usually endures 10 to 25 years after its onset, ending in the patient’s death. The cause of death might or might not be related to the disease.
The University Good Samaritan Center, at the corner of East River Road and 27th Avenue, is one of about a half-dozen specialized health care facilities in the nation with a staff especially trained for dealing with Huntington’s patients.
“When I first started going there, it was a little spooky,” Paul Buck, 27, said of visiting his father, Don Buck, 54.
Don was a resident of the center for a year and a half. He has had the disease for 14 years. Paul has a 50 percent chance of developing the disease.
About 30,000 Americans are suffering from the disease, and about 15,000 of their children are at risk to develop it.
Scientists isolated the gene that causes Huntington’s in 1993. People at risk can now be tested for the deadly gene before they begin to develop symptoms. Paul, like many children of Huntington’s patients, has chosen not to be tested.
Yet Paul has planned his career around the possibility of getting the disease. “I knew I would have to get some kind of a desk job,” he said. He currently works second shift as a computer technician and lives at home with his mother. Nancy Buck has stayed married to Don despite his disease and mood swings. She visits him about once a week.
Each patient has his or her own way of coping with the disease. Unfortunately, depression often leads to withdrawn behavior or suicide.
After three suicide attempts, Nancy put her husband on the center’s waiting list. When Don was living at home, Nancy never knew what would happen next. “When we walked in the door we didn’t know what we were going to find,” she said.
Relatives of Huntington’s patients seem to go though the most trauma. Nancy didn’t know Don was at risk of developing the disease until his mother was diagnosed with it. “I was very angry that I wasn’t told, particularly before I had children,” she said.
Nancy comes to visit him about once a week. Don has a guest book to keep a record of all his visitors.
Don gets more visitors than most residents. “We don’t see much family involvement,” said Therapeutic Recreation Specialist Kelly Petersen. “(Don) is so early staged in the disease that he’s able to talk. It’s difficult to come visit somebody when you’re not getting any input from them.”
Unfortunately, as the disease progresses, certain personality traits become accentuated and a patient might be unable to recognize how irrationally he or she is acting.
Obsessive behaviors are very common in Huntington’s patients. After coming up with a list of 41 complaints about the center, Don put on all the clothes he owned, put a collection of photographs and his toothbrush in a small bag and went to a nearby gas station to wait for a cab.
Staff members soon found him and called Nancy to come and get him. Even she was unable to get through to him.
“When he focuses in on something,” Nancy said, “there’s absolutely no way of getting him off that subject.”
Don refused to go back to the center and is now in a nursing home without the option of leaving.
Paul and Nancy went to the center the following week to collect his things. Nancy thinks Don will eventually go back there as his condition worsens. “I think they have the best care for him there,” she said.
It will become more and more difficult for Don to get the care he needs at a nursing home without a special section designed for people with his disease.
Most of the center’s residents need help doing almost everything. Because motor skills become very limited, the nurses must help patients eat and drink at every meal. Lack of coordination makes meal time a matter of alternately spilling and choking.
The residents need as many calories as they can get because of the severe weight loss that accompanies the disease. Emaciation results partially from difficulty eating and involuntary movements.
Friday afternoon, Kelly planned to feed four residents ice cream. He put four vanilla ice cream bars in styrofoam cups for the diners.
Patty Nadimi stumbled upon the gathering. Sporting a black eye and a toothless grin and carrying a tiny orange gourd, she joined the group.
She falls about five times a day because of her difficulty walking and balancing, and she recently had a bad spill. But she feels no pain.
Patty didn’t come for ice cream; she came for moral support. She sat to keep them company and offered her tiny orange treasure to some of the residents.
Kelly continued to circle the table, from one resident to another, feeding them one spoonful at a time.
Patty often wanders about the floor to check up on things. If she gets too hot, she sits in front of her large oscillating fan to cool off.
Although the onset of the disease is usually between the ages of 30 and 50, each patient’s case can be different.
At the age of 21, Jeremy Dunn is the youngest Huntington’s patient at the center.
Jeremy came to the center just a few months ago. His mother and stepbrother brought him to Minnesota on a train from Montana, where he grew up. He came to Minneapolis for the specialized care he could get here.
His main activity of the day is smoking Marlboro Reds every hour in the smoking room for the residents. “At home I could smoke anytime I wanted,” he said.
Although most residents have severe speech problems, Jeremy said he still feels a connection with them. “In a while I won’t be able to talk,” he said. But he will still be able to feel the presence of his new family.
Despite the restrictions of supervised care and communication problems, Jeremy said he considers the staff and residents at the center his friends. “The people here gave me the help that I needed.”