A lesser-known multiple-sclerosis issue — money problems

Patients with multiple sclerosis struggle with daily financial tasks

Multiple sclerosis is often thought of as a physical disability. But the cognitive aspects of the disease can affect daily financial management tasks.

For most people, managing their finances is hard enough.

But navigating that daily task is even harder with cognitive problems, as those with disabilities, especially many of the 2.3 million people worldwide with multiple sclerosis, or MS, must do.

The degenerative disease, though typically associated with physical impairments due to disruption of the central nervous system, has been recognized in recent years for its cognitive impacts, too, which affect a majority, but not all, of those with MS.

Individuals with multiple sclerosis are more likely to have problems with daily financial tasks including operating an ATM, owing debt for unpaid bills and needing to borrow money, relative to healthy participants who also reported some financial problems, one study found.

The study also found that those with MS committed many more errors on a financial task — using a website to buy cookies online — especially when it came to entering credit-card information.

The peer-reviewed study enrolled 30 adults with MS and 23 healthy participants as controls, examined whether patients with MS had more problems with managing their finances than healthy persons, and what might influence those problems.

A top MS drugmaker, Biogen Inc. BIIB, +2.47% funded the study. In June, the company’s stock fell sharply after a drug to treat MS failed mid-trial.

The study’s small patient population makes it difficult to generalize the findings to the estimated 400,000 Americans with multiple sclerosis, said Kathy Costello, a spokesperson for the National Multiple Sclerosis Society.

For patients, the degree of cognitive impairment varies widely, she said, with most having only mild impairment. Many of those with MS are able to retain employment, she noted, able to live normal lives and manage the disease’s complications with medication.

But for some, cognitive impairment paired with fatigue, another symptom, makes it difficult to retain employment and can also affect ability to manage other daily activities, including personal finance, she said.

Yael Goverover, the study’s lead author and a professor of occupational therapy at New York University, said that difficult financial circumstances attract participants to her MS trials because of the financial reimbursement for their time, about $30 to $50, she says.

She chose to focus the study on buying cookies to highlight the everyday nature of some financial tasks, which become so embedded in daily living that until a person struggles to complete them, they hardly even register as financial undertakings at all.

Before his MS diagnosis, Joseph Zakin had been working as a nuclear medicine technologist, operating medical imaging equipment and preparing radioactive drugs for patient use.

That all changed when the disease’s symptoms manifested. “You can’t make a mistake working with radioactive compounds,” Zakin, now 55, and living in Queens, N.Y., said. “You can’t.”

Zakin receives disability benefits, but with only his wife working, his family’s financial situation is precarious. Zakin also struggled to handle the financial duties he once had, such as paying bills, because of double vision and more.

“I was slow, I couldn’t concentrate. I was afraid to make a mistake, I was punching the wrong numbers on the keypad,” he said. “My brain and my fingers didn’t work together.”

When he lost a money order, his wife, who was already working two jobs, had to take over.

MS’s cognitive facet wasn’t even on the syllabus when Goverover, who is also a scientist at the non-profit Kessler Foundation, was an undergraduate student in Israel specializing in occupational therapy.

She first got interested in MS during her postdoctoral research, thanks to a mentor, and realized that the disease mostly affects women, between age 20 and 50 — “in the prime time of their life.”

“We always viewed it as a progressive disease and said ‘there’s nothing to do,’” she said. “But there’s actually something to do, which is why I was more curious about it.”

Goverover wanted to design a therapeutic way to help patients with the financial tasks that are the standbys of adult life.

Enlisting a decades-old cognitive psychology strategy called “the generation effect” — the idea that generating words oneself helps a person remember them — she designed a study that gave patients tasks and steps to do them. Patients either got complete instructions, which included how to pay an electric bill and ordering clothing from a catalog, or the same steps with fill-in-the-blanks.

The study, which Goverover was also a lead author on, found that for the 20 participants with MS, along with the 18 healthy participants, the “generated” fill-in-the-blank condition resulted in much higher recollection of the steps, both after learning them and during a phone assessment a week later.

That suggests that cognitive therapy could help to improve daily quality of life for MS patients, Goverover said, but there aren’t many options available now. And, with few but Goverover doing this specific research, there’s more to be done in understanding the subject.

One implication of the May study, which assessed how patients managed their finances, is that processing speed is connected to the difficulties, she said. It’s something “we definitely need to look at,” she said, but would hardly solve all of the employment and financial difficulties of MS patients.

Zakin, who didn’t participate in either of Goverover’s managing finance studies, is doing far better today, which he credits to a Paleo diet he’s since adopted.

He also handles his family’s finances once again, though he and his wife still live check-to-check, he said.

“We can only afford what we can afford, that’s all,” he said. Even so, he’s happy. “All you have to be is content with what you have.”

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