By Robin Farmer
Rowena delos Santos used her expertise as a physical therapist to help thousands of patients move and function better. But memories of a successful career and rich life are fading. Rowena, 52, was diagnosed in April 2014 with corticobasal degeneration/corticobasal dementia, a rare progressive neurological disease without a cure.
“It involves the cerebral cortex and basal ganglia,” said her husband, Tim delos Santos, her full-time caregiver in their Jacksonville, Fla., home. “She has marked disorders in movement and cognitive dysfunction,” he said, and the disease includes elements of Parkinson’s disease.
The illness erodes Rowena’s brain functions and consequently her independence. Rowena, who left the Philippines in 1988 to pursue the American dream and help support family in her homeland, needs help dressing and with other daily activities. “I am with her full time because she can’t be by herself,” said Tim, 50. “Things she used to do before, she is not able to do because of forgetting how to do it.”
A physical therapist for 26 years, Rowena first experienced symptoms while working with patients. “She would fade out for about a minute or two,” Tim said. “[But] she could get her bearings back and resume working. That’s how it started. There were several episodes until it happened here at home.
“She was sitting down and doing paperwork, and she came to me in the great room area and said, ‘I think I just had one of those episodes again,’” he said. “She was kind of hallucinating and kind of not there and that was the last straw. We went straight to the ER.”
Rowena remains optimistic, despite the steady march of an illness that requires several daily medications and physical therapy, speech/cognitive therapy and occupational therapy.
“I’m doing good,” she said, in a halting but cheerful voice. “I know I have my husband and my daughter with me.”
When first diagnosed, she cried a lot, she said. “But then after a while I just told myself that crying is not the answer,” said Rowena, who does brain exercises and daily workouts.
The couple said their daughter, Rachel delos Santos, 14, provides incredible support. “Always be there for family, put them first and not yourself,” Rachel said. “Whoever is going through the hard times really needs your comfort, your love and your patience.”
Tim lost his job as a radiation therapist the same month Rowena was diagnosed. They live on Rowena’s Social Security disability income, which is a quarter of their previous income. “At one point, our house was days from being foreclosed,” Tim said. “We have adjusted to not having access to hot water and an old but still safe high-mileage vehicle.”
The family lacks money, but their faith is abundant. “Through this journey, our dependence on our unchanging God has multiplied,” Tim said. “It’s drawn us closer as a family.”
Last spring, three neurologists and a palliative medicine physician said Rowena’s neuropsychological scores and radiological findings were worse than the previous year. Undeterred, the family prays for a miracle to heal Rowena.
“Yes,” said Tim. “God is still in that business.”
PTs discuss their views of dementia treatment
Treating younger dementia patients is the biggest change physical therapist Jasmine Adriano has noticed during her 27-year career.
Dementia is not limited anymore to patients over age 65, said Adriano of Jacksonville, Fla. “Sometimes I see it in patients as young as 32. In the younger population it could be sometimes due to neurologic damage or some organic brain syndrome.”
The age of the patient can affect treatment approaches. Elderly patients have more limitations and co-morbidities compared with younger patients who have more energy to handle treatment-related challenges. Treatment options also can depend on the patient’s stage of dementia, Adriano said.
“As a person ages, there tends to be more factors that play a role in treatment, for example, osteoarthritis, degenerative joint disease and decreased proprioception,” said Theresa Knoll, PT, MST, of Jacksonville, Fla. “The treatment approach must be modified depending on these factors.”
Regardless of the patient’s age, the role of the physical therapist is to assess the dementia to improve patient mobility and maximize independence, which requires patience and repetition.
Ensuring safety for patients and the people around them is another critical component of physical therapy, said Knoll, a physical therapist since 2008. “Education, especially for the primary caregiver, on the environment, mobility and assistance is the most important thing.”
The most rewarding part of the job is “offering hope and compassion to the caregiver,” she said. Knoll also is pleased when “the caregiver has a sense of understanding for the disease process and knowledge of how to cope and deal with dementia.”
Adriano said she feels most rewarded by being able “to help patients get back their humanity and dignity.”
Both physical therapists said what frustrates them most is a lack of education about dementia on the part of the patient’s caregiver and family as well as impatience. “Sometimes the family expectations are unrealistic,” Adriano said.
When dementia has slowed a loved one’s ability to dress or speak or perform other daily activities, someone steps in and takes over instead, said Adriano. “But the patient must be able to do it. Sometimes I say, ‘Let them do it. It may take more time for them to actually dress themselves but let them do as much as they can.’”
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