The Machines of ALS

 As my ALS progresses, I get new toys. So far I have quite the collection.

 First was a bi-Pap breathing machine for use at night. This machine is an upgrade from my c-Pap I was using for sleep apnea. The bi-Pap prvodes both positive and negative pressure. This is to aid the diaphragm and lungs. As I understand, failure of function of the diaphragm is the most common cause of death from ALS so we need to protect and support that precious stretched piece of skin. So I continue to wear a mask covering my mouth and nose at night. I understand there is one more upgrade from the bi-Pap. Another new toy!

Next came my power chair. Since I am unable to support myself even with a walker, I need to use a wheelchair. While I was in rehab in Chelsea, they very quickly determined I would not be safe powering myself in a unpower assisted wheelchair. Through the ALS clinic I was provided a loaner power chair. It was quite a wide chair but it was mine to use! This is an example of how necessary things and people just seemed to appear. I am so grateful for all the people working in the background helping me! The loaner took some practice to operate. It moves like an electric car; it moves only when you move the joystick forward or back. If the joystick is released the chair stops. Our walls and especially doorways show the evidence of the practice required. I eventually received a power chair sized better to me. My new chair has four speed ranges. I loose my nerve in the low end of the third range. I stick to the first range while in the apartment and the second range to keep up with Ingrid in the hallways.

Another machine is a hoyer lift. This is a sling that fits around me with four points of attachment for moving me. The hoyer works with the old fashioned technology of hydraulics and requires an aide to pump a lever. I have no involvement other than to enjoy the ride. Safety really requires two operators to move me around since I am suspended in midair on an extension arm. Kind of like a movable hammock. We haven’t used the hoyer in months as we prefer a sit to stand.

A sit-to-stand (sts) machine is another hydrolic operated machine with battery power. There is a strap that goes around my back and attaches to each side of the sts.my feet go on a platform on the sts. The operator pushes the button and the strap begins to raise. My legs press against firm stationary pads at the shins. I help using my arms and legs.once up the sts can be moved with me holding on and sort of standing. It really feels good to stand with support. I can move this way from the living room to the bedroom. Some aides push me slowly while others make a race of it. I just hold on. Did I mention I really like standing with support. It feels so good. Maybe it is just psychologically with how it used to be.

And there is the cough assist machine. It is an interesting machine to provide exercise to the lungs and diaphragm. It requires me to hold a mask covering my mouth and nose. When started the machine sends rapid pulses of air and suction for about one minute. I should do at least three repetitions. When completed my breathing is crisper and deeper.

Alexa and my iPad are the last machine I will mention. Technology is a wonderful thing. I can type what I want on my pad, hit the speak button, and Alexa repeats what was heard and executes. This may seem trivial but when you are restricted to a chair and have trouble speaking it is a wonderful tool. The iPad is a great tool for creating this blog.

I know I will be more dependent on modern technology as my restrictions increase. So I look forward to more toys!