Caregiver: Robert Hall, husband
Address: 59580 Saturn Ct., South Bend, IN 46614
Telephone: (219) 291-9171

Patient was a literature teacher. Began experiencing difficulty holding items in her left hand, dropping erasers, chalk, books during class. Pain was minimal at the time. Could not wave at grandchildren with left arm or hand.

October 1989
Family physician refers patient to a neurologist.

January 1990
Neurologist tests for Carpal Tunnel and other potential
muscular problems. None found.

Spring 1990
Neurologist diagnosis: MS. This diagnosis achieved through MRI disclosure of small spot on right side of brain.

Treated three and half years as MS patient. Given usual symptomatic drugs for MS.

Symptoms now expanding to involve the entire left side of patient. Left hand and arm becoming very rigid, fingers beginning to curl, left leg and foot involved to where the patient would stumble and fall regularly. On one occasion, patient fell down a flight of stairs breaking her right wrist (requiring a cast) making her life more difficult with no use of the left hand and only limited use of a few fingers on the right hand during the healing process. After three months the cast was removed. Unfortunately within a week the patient fell again breaking both bones of the right leg and the ankle bone cracked. This required surgery to insert a permanent rod from the knee to the ankle, with two permanent pins and two screws for the cracked ankle bone. The patient was required to wear a knee high boot for nine months, undergoing extensive therapy for both the wrist and leg.

Patient never regains full use of the right arm or leg. Before this was possible, symptoms of CBGD began to affect the right side of her body.

After more than three years without the usual remission periods consistent with most MS patients and the realization of the symptoms now beginning to effect the right side of the patient, neurologist does a second MRI. The original spot on the brain was discounted as the cause of symptoms.

July 1994
After four day stay in local hospital and all new testing proving negative, neurologist admitted he was mystified, patient referred to Cleveland Clinic Foundation in Cleveland, Ohio.

July 1994
First appointment at Cleveland Clinic.
First diagnosis: ALS
Medication: Baclofen to ease spasms.
Patient cried often during return trip home.

August 1994
second appointment to Cleveland Clinic, different neurologist, clinic not satisfied with first diagnosis. New diagnosis: Primary lateral Sclerosis. Continue Baclofen. Patient cries often during return home.

November 1994
Third appointment to Cleveland Clinic, yet another neurologist, clinic still not satisfied with first two diagnosis. This neurologist is at the top of his profession, works with an assistant. An entirely new assortment of tests conducted, lasting the better part of two days. New diagnosis: Corticobasal Ganglionic Degeneration

December 1994
Fourth appointment to Cleveland Clinic.
Diagnosis confirmed: CBGD
Extensive range-of-motion therapy prescribed. Clinic contacts South Bend therapist to discuss program.
Medication: Continue Baclofen, add: Sinemet and Klonopin
Continued trips to Cleveland clinic on an every other month basis to monitor disease progression and evaluate medication.

September 1995
Patient is admitted to Cleveland Clinic for two and a half weeks of occupational and physical therapy. She is measured for new wheelchair she can propel herself with the little use she still has in right leg. she is taught means to be as independent as possible.
After January 1996 trips were cut back to every three months as the Clinic’s involvement had been reduced to strictly monitoring the disease and medications.

July 1996 was to become our last trip to the Clinic up to current date. Our South Bend Neurologist had no knowledge of CBGD. Upon our return, after diagnosis, we informed him. He has since received all reports from Cleveland Clinic. Patient has infrequent appointments with the local neurologist as he is now prescribing new medications as the disease progresses. She is currently taking Baclofen, Klonopin, discontinued the Sinemet, added Valium and Vicodin for pain. Vicodin turns her into a zombie. She takes Pepcid AC one hour before bedtime to control her stomach acid. melatonin is also taken to help her sleep through the night. Occasionally we use a nebulizer with Albuterol Sulfate Inhalation Solution to help clear her lungs of congestion. This also requires physically hitting her with a cupped hand to dislodge the mucus in the lung. This is done to both front chest areas, back, and both sides.

At the present time (after eight full years), she is unable to speak, has difficulty chewing, often chokes on food (I have had to reach into her throat numerous times to retrieve small chunks of food. A few times I had to do CPR to save her). Has also choked on liquids. Eyes are basically fixed (can move slightly), eyelids hard to open and close, cannot turn her head (neck pain is almost constant), jaw locks open often (when she yawns to retrieve more air in her lungs), and at times cannot hold her head up (before the Valium, her head would often be drawn backward), has no use of fingers, hands, arms, feet and legs. Recently, this has all been compounded by another diagnosis that she is menopausal. Add Prempro to the list of medication. Some pills are crushed and given to her with applesauce or yogurt. Not all medicine is effective if crushed.

The Patients days are generally spent: Stays in bed watching TV until around noon (this enables caregiver time to do household chores). Caregiver bathes and dresses her while she remains in bed. Transfer from bed to wheelchair followed by trip to bathroom for personal hygiene care, including hair and some make-up. A squirt of perfume and she’s ready for lunch at the table. Rigid jaw muscles need some coaxing to open for even soft foods. Drinking straws are most often flattened by the clinched jaws during drinking process. Breakfast is often soft, moist oatmeal or Carnation liquid breakfast mixed with fruit via the blender. Lunch is yogurt, any food without a lot of consistency. There are some days where she can manage more chewy foods. Her afternoons and evenings are spent in front of a TV set she seldom watched before the disease altered her life. We do manage to get her into the car for short trips around town (just for the ride), and/or visits to local relatives homes for special occasions.

Our local Hospice entered our lives in April 1997 when the caregiver needed serious surgery. The long three month recuperation period made it necessary for the patient be cared for by Hospice nurses with assistance from a local home care group to bathe, cloth, feed her. A second surgery extended this care into early August of 1997.

The purchase of an adjustable bed (not a hospital bed) has made it easier to keep the patient comfortable for her long hours in bed and for watching her TV in bed. The use of the usual raised toilet seat makes giving her enemas easier (her bowels do not function on their own). We have an oversize shower stall in the master bath.

Foley catheters are a way of life for her also.

We attempt to keep her surroundings as normal as possible. There are no ramps, lifts, handicap van or other visible items to make her uncomfortable when company arrives. Her weight is now down to less than 120 pounds. The caregiver weighs 190 and physically lifts her in most transfers.

Unfortunately, with only one exception, the patients former friends have ceased to visit or call. Most have told our relatives they are uncomfortable with the situation (understandable, I guess). The lone, remaining friend will endure till the end.

Despair, Depression, Disappointment are the words for an average day. She makes every effort to be pleasant and cheerful. Her wish is for the end to come, while at the same time her main concern is not for herself, but the future for me, her children and grandchildren, without her. Divine intervention is our only hope.

Robert Hall