IVUN News (Fall 2001, Vol. 15, No. 3) - Polio Place

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David Jayne Goes to Washington:HR 1490 Is IntroducedDavid Jayne, ventilator user due to ALS and founder of the NationalCoalition to Amend the Homebound Restriction for Americans withSignificant Illness (NCAHB) (see IVUN News, Spring 200 I), traveledto Washington, DC, in May 200 1. He met with congressional leadersfor a briefing during the ALS Leadership Conference. Rep. Ed Markey(D-Massachusetts) introduced HR 1490, known as the HomeboundClarification Act of 200 1. Jayne attracted CNN which resulted inbroad television coverage of his advocacy and increased awarenessand publicity for the bill.Jayne and the Coalition also met with Senator Jim Jeffords (I-Vermont)and his staff. Senator Jeffords introduced the Senate version of theHomebound Clarification Act in 2000 and is considering reintroducingit again this year.On the journey home, Jayne encountered former Senator RobertDole who signed on as honorary chairman of NCAHB.A copy of the speech Jayne presented at the congressional briefingcan be read online http: //amendhomeboundpolicy..homestead. com/speech. html.If you have not signed the online petition, please do so (www.petitiononline.com/abolish 1 /petition. html) .MRI-corn pati ble VentilatorIf you are a ventilator user and have received a physician's order foran MRI, you should be able to take the test and to use your ventilatorat the same time. Due to the strong magnetic pull, no metal of anykind can be in the same room as the MRI, so the ventilator must beoutside of the MRI room. A common-sense solution is simply tolengthen the hose/circuitry on the ventilator and keep it outside ofthe MRI site.There are two alternatives to using your own ventilator:1. The RespirTech PRO", which is a small, disposable, one-timeventilator from VORTRAN Medical Technology 1, Inc. (800-434-4034 ; www.vortran. com/respirtech-pro..html) .2. Bio-Med Devices' MRI-Compatible IC-2A and MVP- 10 whichare small transport ventilators (800-224-6633;www . biomeddevices . com) .Thanks to ventilator user Lisa Scholtz for bringing this to our attention.Post-Polio, Swallowing,and CoughChest, the journal of theAmerican College of ChestPhysicians, recently publishedan excellent article, "Weakness,daytime somnolence, cough,and respiratory distress in a 77-year-old man with a history ofchildhood polio" (Chest 2001 ;120: 659-661).The authors are AhmedMahgoub, MB, ChB, MS;Rubin Cohen, MD, FCCP; andLeonard J. Rossoff, MD, Divisionof Pulmonary and CriticalCare Medicine, Long IslandJewish Medical Center, NewHyde Park, New York.They examine the case andexplain their diagnosis of postpoliomyelitissyndrome withrecurrent aspiration pneumoniasecondary to dysphagia.A majority of people with postpoliosyndrome may have bulbarinvolvement and swallowing difficulties,as videofluoroscopicstudies have shown, althoughabout half are asymptomatic.This "silent laryngeal penetration"may delay discovery ofthe role of dysphagia and aspirationin lower respiratory tractinfections.In this case, aspiration and dysphagia,resulting in ineffectivecough, is believed to be thecause of the recurrent respiratoryinfections.Treatment involved.a specialdiet and evaluation and recommendationsby a speechpathologist.
RisksRick Santina (rick-santina@hotmail.com)Barbara Waxman Fiduccia died in May 2001. Because of spinalmuscular atrophy, she used noninvasive ventilation for more than1 0 years, and then chose to undergo a tracheostomy last year.She was widely respected as a disability rights advocate and asan educator teaching people with disabilities about sexuality andreproductive rights. Her work led her into many other endeavorsincluding advocacy to prevent violence against people with disa bilities,and studies of genetic research, cloning, stem-cell research,and eugenics. She was an amazing force in the community anda great friend.Assistive medical technology isa double-edged sword. It enablespeople to live enhanced livesand, in many cases, allowspeople who would have beenplaced in institutions to live"on the outside. " However, theother edge of the sword is thatit requires due diligence on thepart of the person who utilizesthat technology and who is ultimatelyresponsible for its useand maintenance.Barbara would not have wantedher death used as a means toattack assistive technology. Sheunderstood very well that a consequenceof not taking responsibilityfor the equipment individualsused might be that theseindividuals would be placedsomewhere where responsibilitywould be assumed by someoneelse - for their own good,of course.Barbara died because a partfailed. The same part had failedthree weeks earlier while shewas visiting her husband Dan atStanford Hospital. Thank Godshe was at the hospital, the samehospital she had left as a patientjust weeks before. Thank Godthat one of the respiratory therapistswho worked with her duringher stay was there that day. TheER staff and respiratory therapistwere able to save her.Did the experience scare her?Yes, it did. Did she curl up in aball and commit herself to aninstitution so they could takecare of her? Absolutely not. Didshe think about getting a differentpart to replace the one thatfailed? Yes, she was aware ofthe problem and was lookinginto another solution. So whathappened?Her husband died suddenly andher focus changed. She tookher mind off of her equipment;the rest of us did, too. In thecyclone of events around herhusband's death, that little pieceof plastic slipped from ourminds. It was a fatal slip.When someone like Barbaradies, we look for reasons andtry to place blame. We look forreasons and meaning and lessonsto learn. Do we blame themanufacturer? Do we blame thecaregiver? Do we blame theindividual? Do we blame herfriends who should have madesure the details did not slip hermind? Whom should we target?Who killed Barbara? Nobody.Her death was an accident.Assistive technology is a tool.Sometimes we forget thatwheelchairs, ventilators, scooters,and prostheses are tools.We have made the tool ascomfortable and transparent aspossible, but it is still a tool.The lesson is: respect your equipment,never take it for granted,but don't fear it. Remember thatthe same technology that failedBarbara one night had alsoenabled her to live an amazinglife for thousands of nightsbefore. We would not have beentouched so deeply by her deathif she had not lived such anamazing life. She showed us thebest side of humanity and technology,and she made it lookeasy and sexy. She would nothave had that impact if she hadbeen stuck in some hole whereshe would have been "safe,comfortable, and looked after. "Barbara's death is a reminderthat freedom is never free. Barbwould never have traded herfreedom - and the risks andresponsibilities that came withit - for the relative safety of asterile institution. She wouldnot have wanted anyone elseto either. .CiLB ConfmmmVideor Available -* . -. &?:- *, . . - 8I ' t .Vidaatapesofthesesdonoduring"Ventilation a&:Beyond - A Meeting of Minds,"held in May #101 h T6~)nto,are available from CILB(Citizens for Independencein Living and Breathing).For an order form, contactCILB, 55 Greencroft Court,~i&, omaria N2N 3H6,Canada; ciIb@idirect.com.
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IVUN News (Fall 2001, Vol. 15, No. 3) - Polio Place

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