Pan­demic takes a toll on peo­ple with Parkin­son’s disease

USA TODAY US Edition - - NEWS - Karen Wein­traub

“Ev­ery­thing wors­ened.”

The COVID-19 pan­demic has made it harder to live with Parkin­son’s disease, ac­cord­ing to a sur­vey of more than 7,000 peo­ple who have the disease or care for some­one with it.

This spring, peo­ple with Parkin­son’s had more trou­ble mov­ing, and more mood swings, anx­i­ety and de­pres­sion – all typ­i­cal symp­toms of the chronic ill­ness. Most also re­ported dif­fi­cul­ties at­tend­ing med­i­cal ap­point­ments, re­ceiv­ing in-home care, get­ting ad­e­quate ex­er­cise, ob­tain­ing their med­i­ca­tions and par­tic­i­pat­ing in so­cial ac­tiv­i­ties, ac­cord­ing to the sur­vey con­ducted by the Michael J. Fox Foun­da­tion for Parkin­son’s Re­search.

“Ev­ery­thing wors­ened,” said Dr. Car­lie Tan­ner, a pro­fes­sor of neu­rol­ogy at the Univer­sity of Cal­i­for­nia, San Fran­cisco, who helped lead the study.

About 1 mil­lion Amer­i­cans have the pro­gres­sive disease, which is char­ac­ter­ized by tremors, slow move­ment, stiff­ness and loss of bal­ance.

The sur­vey in­cluded 51 Parkin­son’s pa­tients who said they caught COVID-19. Just over half of them re­ported wors­en­ing of their symp­toms, in­clud­ing tremors, loss of bal­ance, mood is­sues, di­ges­tive prob­lems, pain and fa­tigue.

Those with both dis­eases were more likely to be for­mer or cur­rent cig­a­rette smok­ers and to have lung disease, Tan­ner said.

“There wasn’t re­ally a sug­ges­tion that peo­ple with Parkin­son’s were more likely to have other bad out­comes,” she said.

Not much in­for­ma­tion ex­ists about the two dis­eases in com­bi­na­tion, al­though the risk of Parkin­son’s in­creases with age, so most peo­ple with the con­di­tion are also at higher risk for a se­ri­ous case of COVID-19, she noted.

Dr. Car­lie Tan­ner, a pro­fes­sor of neu­rol­ogy at the Univer­sity of Cal­i­for­nia, San Fran­cisco, who helped lead the sur­vey of more than 7,000 peo­ple

Tan­ner said she was sur­prised at the toll that liv­ing through pan­demic – even with­out catch­ing COVID-19 – took on peo­ple with Parkin­son’s, “be­cause of so­cial iso­la­tion, and a change in ac­cess to many services.”

Peo­ple of color and those with low in­comes suf­fered the most dis­rup­tion of services in­clud­ing med­i­cal care, ex­er­cise classes and ac­cess to food, the sur­vey found.

While ac­knowl­edg­ing the dif­fi­cul­ties, Tan­ner said peo­ple with Parkin­son’s should make a par­tic­u­lar ef­fort dur­ing the pan­demic to be in touch with oth­ers “in what­ever ways are pos­si­ble” – via phone, in­ter­net and so­cially dis­tant vis­its – to main­tain their so­cial con­nec­tions.

Re­spon­dents com­pleted the sur­vey be­tween April 23 and May 23, al­though the foun­da­tion plans to keep it open in­def­i­nitely to con­tinue col­lect­ing in­for­ma­tion from peo­ple with the disease.

The sur­vey is part of the Fox In­sight on­line clin­i­cal study, a 3-year-old re­search project that ex­plores the lived ex­pe­ri­ence, ge­net­ics and vari­abil­ity of Parkin­son’s. It in­cludes more than 50,000 vol­un­teers, and de-iden­ti­fied data from the study is made avail­able to qual­i­fied re­searchers.

Health and pa­tient safety cov­er­age at USA TODAY is made pos­si­ble in part by a grant from the Masimo Foun­da­tion for Ethics, In­no­va­tion and Com­pe­ti­tion in Health­care. The Masimo Foun­da­tion does not pro­vide editorial in­put.

DAN MACMEDAN/USA TODAY NET­WORK

Michael J. Fox has pub­licly bat­tled Parkin­son’s disease for more than 20 years. In 2018, he opened up about un­der­go­ing a spinal surgery and en­dur­ing phys­i­cal ther­apy ses­sions. A sur­vey has found peo­ple with Parkin­son’s disease are see­ing wors­ened symp­toms dur­ing the pan­demic.

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