"Cynicism is a self-imposed blindness, a rejection of the world because we are afraid it will hurt us or be disappointed in us. Cynics always say no ... for as long as you have the strength to, say yes.“
(Stephen Colbert, 2006- Knox College Commencement)
In-home Necessities and Pulmonary
Hospital Bed, Commode
and Tilt Shower Chair
A hospital bed will make life for you and your caregiver much more pleasant. If insurance allows, get a fully powered electric bed. Be sure to add a self-inflating air mattress as a topper for the regular mattress. Believe me, this will make a big difference to your comfort.
Two other important items are a bedside commode and an adjustible shower chair. Trust me they'll become essentials. Just ask your OT/PT for options and advice.
http://www.emedhospitalbeds.com/
Inexsufflator: the cough assist machine
Sooner than later you'll need to use what's commonly called a "cough assist" machine. The more technical term is inexsufflator. As your diaphragm weakens you'll have a harder time coughing and bringing up mucus from the lungs. It's very important to expectorate the mucus to guard against infection. The cough assist has many pressure settings, and is usually used with a hose and nasal mask, but hose will fit directly onto trache for vented patients; just be sure to use in conjunction with a suction machine to clear mucus from the hose. It replicates the body's natural cough technique by blowing air into the lungs and then sucking out; helping you cough, and bring up phlegm. It's a little gross, but better than the alternative. This is one of the first machines you'll need.
http://coughassist.respironics.eu/
www.youtube.com/watch?v=oUMyb9h2
https://www.youtube.com/watch?v=QVDIDA8IjWY
http://www.joshuafrase.org/uploads/CoughAssist%20-%20a%20patient%20guide.pdf (recommended, easy learning curve)
Bipap: Bi-level Breathing
Bipap, is a bi-level breathing similar to c-pap, which is used for sleep apnea. The cpap, when set correctly, blows in a constant air pressure which opens the airway and prevents snoring and promotes quality sleep.
The bipap blows air in, but then reduces the pressure on exhale. This is therapeutic for someone whose diaphragm is weak, or weakening. Folks with ALS OFTEN LOSE DIAPHRAGM STRENGTH OVER TIME, AND BI-LEVEL BREATHING (bipap) is a good first step.
As you progress, and breathing becomes more difficult due to diaphram weakening, you may be introduced to bipap assistive breathing. First at night, then later full-time. Eventually you may have to make a life-choice to have a tracheostomy with full-time ventilator (different and more serious than bipap). The beauty of the Trilogy is it can do both; one set of operations can be change to do the other. I really like the Trilogy. It's durable, reliable and portable, even on a wheelchair. It's about the same shape and size as a kid's lunch box, has battery backup. They have two versions, the Trilogy 100 and Trilogy 200. I'm only familiar with the 100. Respironics seems to be a reliable manufacturer.
http://trilogy100.respironics.com/
