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

It's been about a week and the discomfort fm the PEG procedure has largely gone away, as predicted. Just getting used to to having a tube dangling from my belly. Iowa is experiencing a warm spell in the 70s, lovely, though it will end next week sometime, inevitably. Getting ready to drive to Tucson in a couple of weeks, a trek I'm not looking forward to. Wish there were another way to get dog, PWC and van there without the 1000+ mile drive thru high covid states. However it will be worth it to avoid winter in Iowa--we hear the citrus we planted last year are bearing fruit.

Ed
 
Hi all. Sorry I missed yesterday. I was (am) a bit, uh, preoccupied.

Still doing okay and slow progressing, but my right side is definitely moving a little faster than my left. Shoulder and leg hurt most of the time but all things considered I’m fortunate things aren’t moving faster.

More stress today as the remaining votes continue to be tallied. Breathe, Kevin, breathe...
 
Sorry I missed check in too this week. Like Kevin I was preoccupied sometimes feeling I was sleeping with the TV waiting and watching the election returns. All I have to say is God Bless America!

I've been up north now for a couple of weeks. The weather is ever changing from beautiful to brutal. Yesterday was gorgeous so my husband and I took advantage of it. We went to the William McKinley Monument. It has 102 steps up to the Monument and I was curious if I could still climb them like I did last year. Happy to report I did it twice although I was slower this year.

I'm receiving my Radicava infusions up here and have run into a little problem. I've never kept my port accessed for the week in Florida so I'd be able to swim. Being I won't be swimming up here I decided to keep it accessed. Monday, Tuesday, Wednesday I had no problems then on Thursday they couldn't get a blood return. They flushed the port for an hour before they finally were able to get a return. Then on Friday, once again no blood return. They administered cathflo to help unclog the port but unfortunately they had to put in an IV line for treatment that day 😕. They de-accessed the port and are hoping it works itself out for my Mondays treatment 🤞. Just another day in my life. Hopefully I'll have better luck next week.

Hope everyone is doing as well as they can.
 
Lisa, at least you're missing the hurricane! I can't believe we're getting one this late. Looks like your neck of the woods in Florida will bet mostly brutal wind and the whole state will have rain all week. So, no pool for me. My last swim was yesterday and I was in there for 90 minutes.....a bit too long because I can feel it today.

Let us know how it goes on Monday. Praying for success. Glad you were able to do the stairs again!
 
Hi all. Wednesday check-in guy here again. Looking forward to hearing from everyone. Still okay, still slow progression, still scared.

TS Eta appears to be making a hard right and will come back ashore north of Tampa, so we will probably just get rain here in north Florida. Kim, looks like you might be in for big rain and gusty winds. A day or two of indoor stuff...Kevin
 
Reality has set in here in Iowa. After a week in the 70's we're back to normal highs in 40's, low 50's. Doing as well as can be expected 5+ yrs since diagnosis. Getting a swallow test next week to see how close I am to needing PEG--still eating normally with minor issues chiefly with liquids. Happy Veterans Day, tho "happy" not an altogether appropriate sentiment.

Ed (USNavy)
 
I like to hear from guys like Ed who are 5+ years into this mess and still doing OK. It gives one hope. And thanks for your service.

I'm doing alright for a fall Wednesday. With the cold weather, I'm noticing a greater degree of finger/hand weakness, but hoping it's temperature related. I'm also noticing an occasional 'pop rock' sensation on my tongue which I'm sure are fasciculations. It doesn't really matter at this point, but I remember fearing tongue fasciculations when I was in limbo-land, with that being depicted in some ALS literature as kind of a slam dunk for ALS. That feeling has stayed with me, so it scares me every time.

On the bright side, I've discovered I still have enough strength to lift and carry my 50-pound dog up the stairs. She just had surgery to remove some benign (but big) growths and post-surgery she's not allowed to go up or down the stairs for a week. She doesn't like being left alone, and she sleeps with us upstairs. So, I have to carry her up and down, which has not been a problem. Woo hoo.
 
The bit about tongue fasciculations in the undiagnosed was an out of context quote that was misunderstood and widely circulated. The doctor ( Oxford’s Professor Turner) who was quoted clarified that tongue fasciculations are almost always benign and would only be notable in the diagnosed. At this point though Eric if you are speaking and swallowing I wouldn’t worry. I have had them for at least 2 years and am still unaffected in the bulbar region. Lifting 50 pounds! Wow!

in a year where pretty much everything has happened we added an earthquake here last week. It was in southern Massachusetts and even there caused only minor damage. Here it was a minimal tremor. They are certainly not unknown here but it isn’t a regular occurrence
 
Eric,
I had fasciculations in my left cheek and left eye for several months. They went away for two years, now they're back. I've had them in my tongue, too. I get constant ones in my feet and legs. Drugs help....maybe not but I don't notice them as much.

I got my foot MRI back. My doctor called and said I would need a walking boot and physical therapy. I need to talk with him about the minus side of the walking boot. When I sprained my ankle in 2016, the inability to walk on that leg threw out my back and my calf atrophied. It was my "good" leg so I was able to walk again but it took over six months.

His phone message was unclear. I'm not sure if it was just inflammation in my foot or a tear. If it is a tear, I'll use the boot. If it is just irritation and inflammation, I might try PT without the boot and see where that takes me. Ice helps a lot.

For those of you still walking.... DON'T WALK BAREFOOT ON TILE. I honestly think I was walking on my heels (testing myself again) on tile and that caused it. I'll never know.

On a positive note, I find that HOKA running shoes have the widest toe box ever. Up until I injured my foot, I was walking in Brooks and wearing Sketchers around the house. Now I'm wearing HOKA everywhere and just put the sketchers on the bed (with a gel heel pad) for when I get up for bathroom breaks throughout the night.

Ed, thank you for your service.
 
Let me also thank you, Ed, for your service. My father was career active duty Army that actually served in WWII in the Navy before getting commissioned in the Army after college. He also served in Vietnam, and my mother served as a SPAR in the Coast Guard during WWII. Having lived the life of a military brat, I have enormous respect for you and the millions that have served and currently serve our country.

I also know what level of competence, dedication, honor, duty, and respect it takes to reach the highest ranks of the Armed Services. I value the perspectives and concerns of three and four star Generals and Admirals far, far, above that of any politician.

Eric, carrying your 50 pound fur baby up and down the stairs is really impressive! Our sheltie is only 25 pounds and I can still snatch her up if needed. I could probably handle 50 pounds up a flight of stairs, but my arms would let me know that they don’t like it.

Kim, this should be a lesson not to test yourself every hour! Sure hope it is not a tear. Kevin
 
We have settled into fairly typical winter weather here in Montana - some snow on the ground, fairly cold temps. But, lots of sunshine during the day times. I'm trying to make sure I still get out and walk each day a bit, but I'm dealing with a few more logistic issues since I have to have someone help me get my cold weather gear on. Getting my hands in gloves/mittens is problematic.

My progression marches on. I use the walker more, but my hands, arms, and back get tired very quickly. I know I need to start using the PWC more often, but my head is resisting. As of this week, I have caregivers coming in every morning and every afternoon for a few hours - it will be good to have help getting ready in the morning and having meals ready.

On a positive note, my good friends from Chicago are coming out to stay with me for Thanksgiving. They are wonderful cooks and I know my freezer will be full of great frozen food before they leave!
 
I can't even lift my three pound kitten, so 50 pounds is admirable! Speaking of lifting, my legs collapsed when I was transferring from toilet to wheelchair this morning and my stepmother couldn't hold me up. She had to lower me to the floor in the bathroom and call 911 for lift assistance. I don't love it when my former colleagues see me in all my glory, but what's a damsel in distress to do? All is well, I'm back in my PWC and waiting for the ibuprofen to kick in. Kitten on my lap.
 
Nona... there are no words. At least you have your kitten.

I had a cat, when I would sit here at my desk in my high
back office chair he would lay across my shoulders,
His tail would wrap around my face and I had to keep
pushing it aside. He passed from old age. I miss him
dearly. Get another? No. He or she would probably
out live me and be left to someone else's care.

We do have a stray who stops by everyday we put
food and milk out for, lets us pet her but won't come
in the house. Maybe a good thing.

I told Ann... maybe she stops by everyday to make sure
we're ok. :)
 
My daughter had a cat like the one you describe, and it eventually came in and joined her menagerie of 5 cats--we call her and her partner the crazy cat ladies (also 2 dogs). 50 lbs is truly impressive, esp. since I can't really manage stairs anymore, even empty handed. I miss our king sized bed up there. I think stairs became problematic sometime in my 4th year. We've deferred our 4 day drive to Tucson because of the upsurge of covid. Not sure when we'll attempt it.

Ed
 
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