clinic visit and portable ventilator

CLINIC VISIT AND PORTABLE VENTILATOR

I had my quarterly clinic visit on Monday at the Beth Israel ALS clinic
Highlights:

Dr Scelsa, Neurologist Interestingly, my strength has not changed much. He said I may have lost a little strength in my right hand, but negligible. I showed him the stiffness in my left hand and he said there is not much I can do except flexibility exercises.
I am apparently still upper-motor-neuron dominant – closer to PLS, or Primary Lateral Sclerosis. I don’t have the muscle atrophy of lower-motor-neuron disease, so I do not have classic ALS. My muscles in my back are weak so I can’t sit or stand straight for very long. And I have heavy bulbar involvement which affects speech, chewing, and swallowing.

Betsy, Respiratory Therapist She ordered a portable ventilator, which goes on the back of my wheelchair, She didn’t order the car adaptor because I am rarely in a car, but there is a battery pack so I can use it when I’m out, because I am increasingly out of breath during the day, and I can’t travel with the bi-pap, which needs to be plugged in to an outlet. She also adjusted the setting on my bi-pap so I wouldn’t get those carbon-dioxide headaches I have been getting.


Dietician I was bummed to find out that I only lost 6 pounds, so she said I can cut down to 2 cans of food through my tube every day and take in more fruits and veggies by mouth and make sure I hydrate through the tube.

Social Worker and Occupational Therapist: Nothing more they can do for me. I have my insurance coverage and all assistive equipment.

As a matter of fct, my clinic visits are more spaced out now. I don’t go back for four months, instead of the usual three.

I got my portable ventilator this afternoon but now I have to have a platform put in the back of my wheelchair for the battery pack. I am really going to scare people now.