PALS ROLL CALL NEW THREAD (PALS ONLY) [Wednesday or whenever]

Not much today. My lift to replace my wheelchair ramp was delivered...
 
Did Wednesday just happen? Enjoying the Last Dance on ESPN. Needed some sports to distract me from Coronews.
 
Checking in! Snow this morning and wheelchair ride this afternoon. Springtime in the Rockies.

Continuing to do as well as I can.

Steve
 
In the 80s today. Went in the pool. Tomorrow the rain starts. The house has enough food for two weeks so I don't plan on going out next week.
 
Still here. Literally. Haven’t left the house in 2 months. Our governor is doing a good job managing the pandemic (Minnesota). Staying in touch with family thru text, Snapchat and FaceTime even though they are only 2 miles away!
 
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Just me, looking in to say, HI!😎

NONA - STEVE - I don't like the cold but LOVE the SNOW!! It covers imperfections; creates a "new world"; makes the air smell clean; sound is sharper, clearer, travels further; it creates a sense of wonder; it seems magical; lifts the spirit; brings out joyful feelings; causes one to pause and look; encourages settling in and resting; draws one to the door to look and see what type of snow it is and what can be done with it; dogs and children are drawn out to experience and play in it; and many other things. I find it spiritual. It makes me happy :)!!

For you " snow lovers" to experience, sans cold. Enjoy - 🤗 B 😷

FOR THOSE WHO ENJOY A RUSTIC MOUNTAIN HOME


FOR THOSE PREFERRING A OPEN FOREST HOME
 
Delightful Wednesday Everyone!

My cough assist finally arrived today after initiating this acquisition mid-January. Incompetence, red-tape with Medicare, and problems with pandemic influences on Respironics distribution are all part of this months-long task. So now, as with so many new assistive devices brought into my life, I try to figure out how to best make the cough assist beneficial to my well-being.

I had a nice phone call Monday from one of the social workers at the local ALS Association chapter. I am excited to still be able to participate in the national ALS Advocacy Conference using a totally virtual platform. I will be able to be part of the phone call to my Congressional Representative and possibly U.S. Senator.

Hopefully the weather is making for outdoor opportunities. I am hoping to get out to a park this weekend for a picnic! ☺
 
It's raining here today. High 45 low 40. We're inching toward spring. I'm melancholy today. I haven't been outdoors since October. Negotiating the logistics is what has me. I have 3- caregivers. Their schedule is 9-1, 3-5, and 7-9 it takes ever so long to get ready, I feel that I would be rushing back for my 3-5. I don't want to inconvenience anyone. I am so over ALS, I really want to get over it, or on with it. This stage of endless limbo, waking up, to be this alive, but not living, a functional head atop the body of a marionette with the strings cut. I don't think I really want to even see people anymore. I have nothing to say, one thing I have noticed is the nothings that made up hours of conversation. I would give anything to be doing spring cleaning, my Tuesday night cards group would talk about the new spring and summer colors, putting up the winter clothes, seeing who grew out of what.. I miss it all.
 
a functional head atop the body of a marionette with the strings cut.
I empathize with that image, only my head is not so functional and my arms have a little bit left. It’s so hard to see it go, like the last leaves falling off a tree in autumn.

Dee Dee, I get it.
 
I'm here. I'm mad. I don't really know why or at whom.

I thought going in the pool would make it all better but watching an 86-year old man swim laps while I dangled on my noodle just made me sad. Everyone was talking about walking on the beach and trips they are planning for Fall and Winter.
 
I’m here and can relate. Legs are worthless, arms mostly gone, right hand minimal. Left hand ok for now (but I am right handed). Voice is a mess and I don’t know what to “talk” about anymore. Just riding the train waiting to see where it’s going. Comfortable for now. 😷
 
It’s so hard to see it go, like the last leaves falling off a tree in autumn.

Dee Dee, I get it.

Same here. I am just something on the family's chore chart.
I tell my family that I am just like a dog: feed me at specific times (just put it front of me without much input), make sure I have water before heading to work or online school, ask if I need to potty before doing your business, take me for a walk or just sit me outside if it is nice, no accidents in the chair, toys (tv remote, phone, computer, newspaper) close by. You get it, right? Do I insert laugh emogi :ROFLMAO: or sadness :(?

Husband (arriving home from work): So, what did you do today?
Me: I sat here, then decided to sit here, after that thought I might go ahead and try sitting here. Busy day...I'm worn out.
 
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