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The first slight indication of any problem for this patient, a healthy, athletic male in his mid-seventies, was in late 1991. He had been a good golfer but noticed increasing difficulty with his golf swing. A year later, during a routine physical examine, his doctor prescribed medication for a mild tremor in his left hand. Later that year he developed spatial problems while driving.

In 1993 he gave up trying to play golf, as his left hand was becoming increasingly hard to use. His internist referred him to a neurologist, but MRI’S, x-rays and various other tests revealed no specific problem. He was also checked by a neurosurgeon. Parkinson’s Disease was suspected. He was referred to a neurologist at the UCSD clinic in San Diego who confirmed the possibility of Parkinson’s and started him on Sinemet. That was discontinued because of adverse reactions. By December his speech was a bit deliberate but not enough to be too noticeable to others.

A second MRI and hand therapy in 1994 produced no positive results. He gave up driving the car. The doctor decided to start him on another course of Sinemet which also had to be discontinued. Following a third set of MRI’S, still inconclusive, he was started on Parlodel which also had to be stopped. His left wrist became stiff.

In early 1995, the neurologist at the UCSD clinic gave the possible diagnosis of progressive muscular palsy and started him on Permax. This was followed by six weeks of hand therapy, as his handwriting was getting much worse. Speaking required increasing effort although his speech was distinct enough.

From September 1993 through March 1995, he had been given Sinemet (twice), Parlodal, Artane, and Permax. None helped. All caused adverse reactions such as dizziness or a drop in blood pressure resulting in many falls, sometimes three or four a week. Several times he started walking rapidly and could not check himself until he fell.

He was finally referred to a Motion Disorders specialist at the UCSD clinic, Dr. Clifford Shults, who, after a very thorough examination, said he thought he knew the problem and diagnosed corticobasal ganglionic degenerative disease. We still knew very little about it.

In late May of 1995, he became very ill with a sepsis and was hospitalized. After the infection subsided, he was unable to walk and speaking was more difficult. He spent a month in the hospital undergoing intense therapy. I was also instructed in how to help him, as from then on he could walk only with assistance and the use of a gait belt. He could not get out of a chair by himself.

When he was released from the hospital, occupational, physical and speech therapists came to our home. He was also provided with the services of a Home Health Care Nurse and a person to assist him in showering and bathing. We installed grab bars in the bathrooms, acquired a seat to place over the bathroom stool and a wheelchair which at that time we did not need to use in the house. We also bought a small bike for exercising his legs, a brace for his left hand and a plate guard.

He began to experience some swelling in his left hand and leg and was put on a diuretic. His left ankle began to turn outward, his left leg was weakening, his back became more bent, and he listed to the left when walking. A comprehensive eye exam revealed that while his eyes worked independently, they would not coordinate for reading. He could not write or use the computer and could only watch TV in a limited way.

In October, 1995, he was invited to spend two weeks at the National Institutes of Health in Bethseda, MD to participate in a study of this disease. He had been a very healthy man—took no medication—so any problems were because of the disease. So little is known about it and there seems to be no clue as to what causes it. The doctors at NIH supplied as much information as they could about it and provided as much help as they could in how to cope with it, but the sad reality is that this disease is untreatable and terminal.

Upon returning home, he was assigned to Hospice. Every morning someone to help him shower and dress, a nurse made regular visits and we could summon help at any time. All this was under Medicare and Blue Cross and the supervision of our doctor, an internist. We were not in an HMO. Most of the therapy was discontinued as he became too rigid. He wore both day and night braces on his left hand and a brace by day and a Podus boot (supplied by NIH) at night on his left foot. They also supplied me with a back brace to wear when working with him. By December he was using the wheelchair in the house most of the time, and later we got a hospital bed and bedside table.

By early 1996 a caregiver was sometimes supplied by Hospice to come for a couple of hours so I could get out to do errands. Our children stayed as much as possible and friends helped a lot. Our oldest granddaughter, in her final year, of nursing, came to live with us for the summer and help.

His mind stayed alert and active although speaking became more difficult. He enjoyed visits with friends and retained a remarkably good attitude. As he could no longer read, he spent hours listening to “talking books’ which were supplied, along with the machine, at no cost by the Braille Institute. (Arranged by the doctor.) This provided many hours of pleasure for someone who was a great reader.

His condition seemed relatively unchanged for a few months but by early June, 1996, it was apparent that the disease was finally exhausting him—just wearing him out. He was definitely weaker and no longer wanted visitors. It was too wearisome to try to follow conversations and make responses. He no longer wanted to leave the bedroom. Chewing became an increasing problem, so foods were cut in small pieces. No longer could he manage feeding himself.
Because in various parts of his body he began to experience nebulous but still very real and distressing pains for which there was no visible cause, he was started on small doses of morphine and ativan. He also developed extreme sensitivity to noise—the clatter of dishes, the shutting of a door, loud laughter or noises—all of which normally would have gone unnoticed but now caused him distress.

For some time he ran a low-grade temperature for which we were unable to find any cause. Another unexplained condition was that quite frequently one limb, usually his right leg, would be very cold to the touch clear up to his knee while the rest of his body was warm, yet the pulse in that limb was normal. About the last month he had episodes of “pumping” his right leg which could only be quieted with doses of morphine. Toward the last this leg became drawn up and almost impossible to straighten.

Because swallowing was so difficult and choking a real concern, he was started on soft foods. Until the last two weeks, he continued to sit up in a chair for a while each day. His ability to speak became so limited that he mainly communicated by squeezing our hands, but he understood everything said to him. Doses of morphine and ativan were increased, as he obviously had pain and discomfort.

The last five days he was unconscious. This later deepened into a coma. He was unable to swallow even medications which had to be administered by syringe into his mouth, so he rapidly lost weight. We turned him every two hours. He died in July, 1996.

Added thoughts:
I can’t stress enough how helpful Hospice was and the importance of a good doctor who cooperates well with them.
Almost all of the equipment we had to acquire was supplied either through Medicare or our insurance.

Early on he dressed in his regular clothes every day. As he became stiffer, we went to sweat suits and later pajamas. Toward the last we used colored short-sleeved tee-shirts for tops and split them down the back for ease in putting on.
It would be wise for anyone faced with this disease to consult their attorney to be sure all legal matters are in order.

Contributor remains anonymous.