Physical Medicine Interventions for Duchenne Muscular Dystrophy, the Including Avoiding Invasive Airway Tubes

20 about CO2 levels, O2 needs to be avoided so that CO2 does not soar and coma, to intubation, to tracheotomy occurs. Most using TMV eventually die because of tube complications. 34,35 Extubation and Decannulation Virtually all patients with DMD, intubated for pneumonia, can be extubated to CNVS and MIE so that none need tracheostomy tubes. We recently reported 486 cases of DMD, 57 of whom over age 40 and 15 over age 50, with only three requiring tracheostomies because of also having severe concomitant lung disease. 11 All 81 ventilator intubated unweanable patients were successfully extubated to CNVS without resort to tracheostomy tubes in CNVS centers around the Americas. We have had three patients intubated for over 5 months waiting for insurance approval for transfer to us and failing up to 6 extubation attempts locally only to be extubated in under 24 hours to CNVS and MIE upon arrival. It is important to note that whether intubated for over or under 15 days up to 10% of patients may require stomach tubes long-term post extubation due to translaryngeal tube glottis damage. 36,37 While many of our DMD patients using CNVS for 25-30 years have never been hospitalized for any reason, 38 and MIE can prevent over 90% of pneumonia and episodes of ARF, 39 most with DMD have episodes of ARF that necessitate intubation then re-extubation to the CNVS and MIE to preserve their quality of life and to avoid the morbidity and mortality due to tracheostomy tubes. We have also decannulated CTMV dependent DMD patients to CNVS, including some with 0 ml of VC. 40,41 Many with over 250 ml of VC weaned to sleep nasal NVS only after tube removal. Thus, DMD clinicians need to learn how to extubate unweanable patients so that they can wean from CNVS after extubation to NVS and MIE. Quality of Life Poor quality of life is usually given as the reason for not offering ventilator use. However, no quality-of-life criteria, particularly those established by physically intact individuals, can be appropriately applied to the disabled. The quality of life for the severely disabled is ameliorated by wheelchair tray mounted robot arms described by us since 1987. 42 More recently, robotic arms have become more advanced and attached to the wheelchair itself like the JACO TM (Kinova Robotics), Quebec and even more recently, by humanoid robots. Life satisfaction, rather than quality of life, depends on personal preferences and subjective satisfaction in physical, mental and social situations, even though these