I had a bad couple of days last week where I just didn’t have the strength to get into the tub. Twice last Wednesday I had to be taken off the floor by the aides and my doorman because I got stuck in the “no-man’s land”, that passageway into my bathroom that won’t fit a wheelchair, and only fits one person. The aide held me up as long as she could, and then for the safety of both of us, I had to drop to the floor. You can’t pick up a person with muscle weakness by the arms or legs, because there isn’t that muscle support around the joints, and you can dislocate a limb. Next time you eat a chicken, look at the hips and legs, and you can see what I mean. So I had to be lifted from the torso.
For the next day, Ellita and I worked out a strategy whereby she would wash me down and we would go to the hair salon every few days for a shampoo. But by Friday we both figured out that if I took the few steps into the bathroom slowly, resting between each step, I could do it, And I can’t make that turn into the shower right away; I have to sit on the toilet and rest for a few minutes.
I had gotten back the Mercury talking device, but it had a whole new problem. So Ron came and fixed and I have my fingers crossed it will behave. So now I can pack the ALSA loaner up in the box and send it back.
Olga the Respiratory Therapist came to adjust the portable vent. I figured out that I just have to carry a little piece that goes in my nose, in my bag.
Hooray! Louise asked me why I didn’t ask her to take me to the Murphy’s for July 4th and I said that I knew she always goes to a barbecue with the people from her church. So she said that she will forego that, and go with me! Jeanellen actually rented a handicap-accessible port-a-potty --- I never knew there was such a thing.
I am going to join SATH.com. That is an organization that specializes in travel for the disabled. Even if I want to go to a friend’s house upstate, I could use them for something like handicap-van rental, or wheelchair rental on the other end.
I proposed to Sue Zimmerman, the ALSA social worker to work with the new social work intern on a manual of resources for people like me, who have care and equipment, but can’t work anymore, and want to live our best lives with ALS. Sue is pitching the idea to Adele Marano of ALSA.
Until 2004, I was an independent and active woman -- a former airline sales exec and then a high school educator. Then my body kept betraying me. I was finally diagnosed with ALS/Lou Gehrig's Disease -- confined to a wheelchair and unable to speak. With life at a slower pace, I learned to live a more conscious and mindful life -- buying, eating and other choices. I listen instead of talking, and I observe instead of running and rushing.
Wednesday, June 27, 2007
bathroom hassles and living my best life
Posted by Fern Ellen Cohen at 10:45 AM
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