b'Life with MSFFiiffttyyYYeeaarrssooffMMSSNNuurrssiinnggHHoowwtthheeddiiaaggnnoossiiss,,ccaarree,,aannddlliiffeeeexxppeeccttaannccyyooffMMSShhaasseevvoollvveeddBy Cherie Binns More than 50 years ago, I began my nursingNNeewwttrreeaattmmeenntteemmeerrggeesseducation. I met my rst MS patient in 1971Twenty-two years later, I worked as a home and was assigned to care for James duringcare case manager for a large visiting nurse my rst clinical rotation. He was in his lateservice with an average caseload of 30 patients. 30s,spenthisdaysbetweena wheelchairI saw six patients a day in their homes and andbed,hadtobebathed,dressed,andhad two women with MS on my caseload. Both needed assistance to eat. were conned to their bed. Both, like James, had Jameshadbeenunableto voidonhiscatheters and were on bowel routines. Both own for several years and had an indwellinghad contractures that permanently affected their (Foley) catheter and a bag to catch the urine. Whenability to stand or use their hands efficiently. he did move his bowels, it was involuntarily,Both had bed sores. Life expectancy in 1990 so we put him on a bowel routine every threeremained around 58 years for individuals days where he received a stool-softeningliving with MS.suppository, followed by an enema half anIn1994,after19yearsofintermittent hour later to empty his bowels. This often didsymptoms following a hospitalization for a not fully clear him out, so it was followed by asevere attack in 1975, I received a diagnosis manual evacuation of the bowel, which entailedof MS. I think I suspected this for years and the nurse putting on a glove and reaching inwas living in denial. Work was becoming with a nger to pull out the remaining stoolincreasingly difficult due to fatigue, heat-related that was within reach. The process took thesymptoms, and cognitive impairments, especially better part of a couple of hours. Because he was immobile, James hadtowards the end of the workday. I requested developed pressure ulcers (bed sores) over hisaccommodations to shorten the driving time tailbone and on both hips, which had to beand consolidate my caseload to the 20 square debrided and dressed twice a day. The averagemiles for which I had originally been hired. age of death in the 1970s for an individualInstead, I was given six additional patients living with MS was 57.8 years. People died,with MS from other nurses territories, which not from MS per se, but from pneumonias,extendedmydrivingtimeandlengthof UTIs or sepsis due to infected wounds, or, inworkday because, You will understand them rare instances, bowel ruptures because of severebecause you are living it too. My days went constipation. It would be another two decadesfrom eight-and-a-half hours to sometimes 10 before our rst medication was approved tohours a day, and I drove more than 90 miles treat MS.between patients instead of my 10-15 miles.msfocusmagazine.org 12'