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

Yet another non ALS health issue... Not sure what yet. The Dr is using my home health nurse to try to pin it down...
 
I had a rough Wednesday. I'm alone for a few heavenly hours every afternoon. I park my PWC in front of my eyegaze and spend my time reading, texting, socialing, and such.

Yesterday my lower back was uncomfortable so I turned on my head controls to adjust the angle of the back rest. Tapping the left head pad runs through the seat parts, and tapping the right is supposed to toggle between forward and back. Only it wouldn't toggle. Every time I tapped right, the back rest tilted forward. I tried to tap again to toggle back, and it tilted forward again. This happened three or four times until my head fell forward, off the headrest because the seat was tilted so far forward. Couldn't lift my head up to get to the controls.

Ok, I thought, I'll press my medical alert button that is strapped to my ankle. Except that I couldn't get a good angle or enough pressure on it and every time I tried to press the button with my heel, toe, or footrest, the strap moved, and the harder I tried, the sweatier I got and then everything got slippery. Long story short, that's how my friend found me an hour and a half later, soaked from drool and sweat and achy and pissed. ALS ain't for sissies.

Don't adjust your chair when you're home alone!
 
Oh Jessie, are you alright today? I'm so sorry this happened to you! Please take care and find a new location for your alert button.
 
Cathy, I'm ok. Ibuprofen is my friend and I have pt Monday for my neck. We taped a bigger call button to my chair that I can hit with my heel and tested it twice. I just have to be careful not to hit it by mistake.
 
Seems like we all missed Wednesday :oops:. Still stifling hot here, we're supposed to get alot of rain starting tomorrow from tropical disturbance Faye. Hopefully it will cool us down a bit. I went and had a Covid test yesterday, I'm scheduled for port placement surgery tomorrow and the hospital required it. I was sure it would be negative since we rarely leave the house and if we do we wear a mask. They expedited the results and informed me this morning it was negative. Sad that my husband won't be able to be there with me tomorrow, we were told that he has to drop me off at the front door of the hospital and someone will be there to meet me. Happy though that they're still going ahead with the surgery with Florida Covid cases climbing. Hospitals further south are starting to suspend elective surgeries.
 
Lisa, I'll be thinking about you tomorrow. I'm glad they're doing it because I think Florida will get worse before it gets better.
 
I’m sure everything will turn out fine, Lisa.

Kim, you are so right about Florida getting worse...unthinkably worse....before it gets better. Just announced 120 deaths yesterday, shattering the previous high by a large amount. So much for the “the cases are much younger, so there will be fewer hospitalizations and deaths” theory of our esteemed governor.

Here in Leon County, while still relatively mild compared to the apocalyptic events in other parts of the state, we went from five COVID hospitalizations at the two hospitals to 66 in a week and a half. The smaller hospital is already out of adult ICU beds.

A long, hot, tragic summer lies ahead. I find the mental strain of ALS, the pandemic, the heat, and our reluctance to travel to be very tough at times. To top it off, my wife teaches special needs middle school kids, and I’m so worried about her being required to be in classes in five weeks. Tough times.

Here’s hoping that everyone finds inner peace and contentment for at least some part of each day.
 
Kevin, I have to concur Desantis is a moron. I can't believe the climbing cases and yet they want schools open August 12th. I fear like you for your wife for my daughter who is a middle school teacher. Somebody's going to have to make some sense of the climbing numbers here.
 
We've been enjoying a stretch of nice but warm (low-to mid-90s) weather. I haven't been out except for a couple of doctor visits.
My neurologist referred me for a PWC, and the person from the DME supplier came here and we had a video call with a Physical Therpist at the technology center associated with my health network. I think we are headed to Permobil M3. I'm excited and grateful to have the chair, but can't help but remember when I thought needing a PWC was a negative threshold to cross. Mostly, I am happy anticipating how much easier it will me it for me versus creeping along behind my rollator. 😃

Lisa, I hope your port placement goes smoothly. It will make things so much easier.

Regards,
 
I'm beyond it. I knew yesterday was Wednesday, ugh! I'm frustrated. I am just antsy today. I want to go outside, but no one is available. My next shift caretaker isn't til 7:00
signed whining for no reason.
 
Oh Dee Dee...I totally understand! You can whine, as loud as you want.

Many of us are in the same boat:
-only eat when someone gets it (and what they are willing to bring to you made their way)
-get out on someone elses schedule
-wear the clothes someone else picks out for you
-pee and poop on someone elses schedule
-get out of bed when hubby wants to get up
-spend every moment at the will of others (except for the few hours left alone in your chair with a computer, phone, and tv remote)

Our new life :(
 
Kevin,

I cannot imagine doing what your wife is doing. That job is a front-line worker AND caregiver of children AND teacher, not to mention her at-home responsibilities.

She will be in my thoughts and prayers and I hope our Governor changes his mind. My cousin is a principal at a HS in West Palm Beach. They are not going back live unless things get a lot better. South Florida's Miami/Dade district is also refusing to comply. Let DeSantis teach a couple of classes if he thinks it's so safe.

Meanwhile, in DB Shores, Florida our best hospital, Advent Health, is full. Our only other option is Halifax and I've been there once. It's dirty, has a high rate of staff infections and has been written up more than once.
 
Thanks for the kind thoughts Kim. And I hope Ace has a better day and night than his first one back home.

I have admittedly been self absorbed with ALS, but lately my thoughts and sadness have extended to the hundreds of millions around the world without a terminal illness that will die or suffer needlessly. And the richest country on earth is leading the way in that horrible reality.

But remember, if we just test less we won’t have as many cases. So I guess that means the 133,000 souls that have died so far would not have have died if they just hadn’t gotten tested.
 
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