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

[Statius@]

Nothing worth reporting here. Nice weather continues in Tucson--70s--tho as always we need rain. Wife is scheduled for her 1st vaccine next week and our "adopted" daughter (fully vaccinated) is paying a short visit from Iowa on the 20th.

Ed

 

[KimT]

Not much going on here. My big outing this week was to get my hair cut and Ace got groomed. I am very apprehensive going anywhere in my area because people gather, without masks, everywhere I look. I can't wrap my head around that. Fortunately, the lady who cuts my hair only takes one customer every hour and schedules me for first after lunch. She is the only one in the building, wears a good mask, has an air purifier going and the window open. I felt safe but kept my mask on.

Next two super spreader events in Daytona will be Daytona 500, then Bike Week. I expect a huge spike after both events.

Like Al says, "it is what it is." I can relate

I, also, try to keep positive and I do it through humor, meditation, and focusing on something other than myself. The last thing is hard when you have no family.

Last year, the pool saved me big time. I was in nearly every day and I'm counting down the days until they turn the heater back on.....usually March.

Please stay safe.....and warm.

 

[EricInLA]

Hi friends - It's too late today to try to get my PMA on, but I'm gonna make it a point to start tomorrow that way. Lets see if it works! Ha. I strongly agree that laughter, even at one's own expense, helps get you through a lot. We crack each other up in this house.

I had my 6-month clinic visit today. The consensus is that I continue to progress very slowly, so much so that the Doctor doesn't think I'm a great candidate for the platform trial, which they're finally starting at Cedars-Sinai. He's willing to get me in there if I want, but it involves doing another NCS-EMG (I hate those) and then all the bureaucratic stuff, etc and then actually going through the trial. He hinted that even if I don't get the placebo, it will be hard to know if I'm benefitting because my progression is so slow already. Anyway I have to decide soon because my 3rd anniversary of symptoms is this May. I'm leaning on not doing it and volunteering for the observational studies instead. Who knows, maybe I'll change my mind. He said if I don't do the trial, I can start taking TUDCA. I also got some good tips from OT - apparently magnetic buttons will solve my button fastening difficulties (not that I'm wearing many button-shirts these days)

My muscles are loving this temperate weather we've been having here in LA. Looks like that will continue for the next 10 days. This is the first winter where I'm really noticing the effect of the temperature.

Al - I also enjoy those old comedy shows. I'd say my favorites are the Dean Martin roasts at the old Friars Club, and anything by Don Rickles or George Carlin (he was a genius). Speaking of TV, did anyone watch the impeachment trial today? I was totally riveted. I thought it was powerful.

 

[Clearwater AL]

Our date (Ann and I) got moved up from Wake and we got our first
shot of Moderna vaccine yesterday. We go back in one month, same
date and time. We were really surprised… it was April 27th.

Ann has no side effects, for me, I am unusually tired but other than
that it went well. We had to sit for 15 minutes after, there were 5
other couples in the spaced out waiting room. No one showed any
adverse effects.

We are so grateful… our heart goes out to those just struggling to get
through on the phone or online for an appointment and those, so far,
that seems hopeless.

(We got a phone call at 7 o’clock Wednesday night saying they had
an opening the next day (Thursday) at 2 o’clock. We took it… but
then we did some double checking because after the call we wondered
if it was a scam. It was legit.)

We hope things turn around quickly for the others.

 

[KevinM]

Wednesday check-in, family. The unbelievably extreme weather this week from the northwest and basically everywhere else except Florida, southern Arizona and parts of California has been on my mind, and I sure hope no one here has been or is currently without power in such brutal conditions. The situation in Texas is nearing catastrophic if the millions without power for days don’t get some heat and water soon.

I can only shake my head in continued disbelief at the “reporting” that comes from a certain news outlet. It was asserted by one of their minions that the reason for the power failure was because of the freezing up of the wind turbines, and that it was because of the hippy democrats pushing for all that clean energy that caused this.

Another jaw dropping moment, given that it was a complete lie (the head of the Texas Energy Commission announced to the world that more than 2/3 of the outages were caused by failures with the natural gas, coal, and nuclear facilities freezing up, with only 23% due to wind energy).

They literally pushed yet another big lie for what? To stir up another “us against them” culture war out of a horrible disaster that highlighted numerous weaknesses in the Texas grid when faced with extreme weather, apparently. And the saddest part is that millions of people whose brains have been poisoned with easily disprovable lies like this fervently belief that the socialist liberals have further destroyed the country with their crazy clean energy agenda.

I think we need a big lie vaccine as much as we need the COVID vaccine. I have a fantasy where some of the most egregious liars suddenly get stricken with the inability to tell such whoppers, a la Jim Carrey’s “Liar, Liar.” Now that would be some great viewing! Best, Kevin

 

[KimT]

Kevin, I have that channel blocked from my televisions so I won't be tempted. My ex-husband, whom I supported for seven years then kicked his sorry A$$ out, watched that channel day and night. Now he's a conspiracy theorist. I thought highly of his mother and since he is living with her now, I pray he doesn't get in trouble for her sake. She's 96 and still going strong. Fortunately, they live far from me in Ann Arbor and his mom is well off so he'll be with her until he gets his inheritance.

Indeed, Florida escaped most of the storm but one of my niece's properties, in Madeira Beach, got hit with a tornado. Just a couple of palm trees down. Her other property, right down the road didn't get touched. They come down frequently but still have their main home in East Aurora, NY.

I have a friend in Plano, Texas who hasn't returned text messages so I'm concerned about her. I know she has two sons in the area so I hope she has options if there is no power. I've been to Dallas in the Winter and the Summer. The weather there is extremely hot (much more so than coastal Florida) in the Summer and freezing in the Winter. I don't like extremes. But even true Texans have never experienced what they're going through this week.

I decided to upgrade my central A/C with an Infinity coastal unit. It has humidity control separate from cooling/heating and a whole home air purification system. Unfortunately, I'll have to replace my Nest thermostat with the Carrier thermostat or lose some function but so be it. If I have to be cooped up in this place, I want it to be pleasant.

Other than that I've stayed inside except for short walks and sun. I went to the beach last Friday and it was beautiful. I could have walked across the street but I wanted to use what stamina I had to walk on the beach and take in all the sun and salt air. I'm glad I did because it rained over the weekend and is cloudy now. Today I will organize my closet once again. There are more and more things I no longer wear and I have a friend who is my size so she loves getting new-to-her clothes and shoes.

I've still not had success getting a vaccine. Now shipments have been delayed to our area because of the storm so I won't even try until next week.

Nothing more to report.

 

[nona]

Fairly quiet in NH. I'm putting in a new floor in my bedroom next week in anticipation of using the hoyer lift. My legs are still able to stand and pivot but I suspect not for much longer. I've had some pain in my right heel that sounds like the fasciatis that Kim is dealing with, except that I don't walk. My feet are flexed during the day in my PWC and then more relaxed over night. It's strange.

I am considering rehoming my kitten, now almost six months old. For his sake, he needs more room to run and be outside. Way too much energy for a three-room apartment. I love it when he stretches out on my lap, but he wants to suckle on my ears and when he does he kneads on my face and neck. If I'm alone it can be dangerous. See attack cat photo below.

 

[KimT]

Aw, Jessie, I'm sorry. Really cats do best indoors but I understand the need to rehome. Kittens can be full of energy. You don't want to end up with an infection from the cat. That happened to a friend of mine who had five cats. One of them "attacked" her ankle and she ended up in the hospital. Good plan on the new floor.

Plantar fasciitis hurts like heck. I had no idea but I should have known better than to walk on hard tile barefoot. Just about every person I know, here at the condo, have had or know someone who has had that curse. My doctors disagree on the cause. One says loss of muscle in the foot, another says walking on tile, the third says gaining nearly 30 pounds on an extra small frame. In other words, they don't have a clue. I do know I favored my left foot and now my right knee hurts again. I had resolved it with PT and pool three years ago but now it's back, along with pain in my back from cooking too much or standing too much. I give up trying to figure it all out.

The Hoka sneakers got the fasciitis better but caused my arch pain and now it's sprained per MRI. I need to call and see if I can get a shot in my foot. That helped a lot.

 

[blitzc]

Happy Wednesday everyone! it's been a crazy couple of weeks here trying to get new aides hired . last week I was able to hire two new aides who could fill in occasional days when my other Aide is not available . I'm so excited because I've been trying to find help for the last 5 months . one of the girls is a nursing student at a local College and the other works at a nursing home caring for 1 MS patient which helps give her experience with my situation. it has been a frustrating. Of time looking for good quality help. Now that I have two new people I fired another girl who was not able to transfer me securely . she was not happy about my phone call but I told her there was no way she could continue with my care if she could not transfer me now .

I know I've shared with you my concern about hip and leg pain during the night . so last week my husband decided to go out and buy us a Sleep Number bed . it's a pretty expensive solution to my problem , but he's hoping I will be able to find Comfort during the night . I remember people discussing using an air mattress for a bed. The Sleep Number Bed is an air mattress . I hope it works! my husband was excited about this being the perfect solution to him sleeping as well . But then I reminded him he still needed to flip me that the bed would not do that on its own!

Jessie- I'm sorry about your concern with the new kitten . I was really hoping this would be a great companion for you.

That's all for now! Take care and have a great week!

 

[Fusia]

Kevin - I like your idea of a "big lie" vaccine! Just imagine what the roll out on that would be like, though.

Jessie - so sorry to hear you are thinking of re-homing your kitten. I know caring for dogs is much different than caring for cats, but my biggest worry through this whole journey so far was how I was going to continue to care for my two dogs - I had many, many sleepless nights worrying about it. I did rehome them last August, and, while it was extremely difficult and sad for me, it has really been the best thing for all involved. It's a great relief for me, their new parents adore them, and they have a great life. However, I do miss them very much, but I still can go visit them and walk with them around their neighborhood. The sadness lingers, but it has dissipated somewhat. I hope you can come to a good solution for you and the kitten at the right time.

It's crazy, but here in Montana we've actually had pretty nice weather for the last several days, while the rest of the country suffers from the cold, snow, and ice. We may see some temps in the 40s this weekend and early next week, which is pretty balmy for us.

My DME guy and my OT came to the house yesterday to make some adjustments on my PWC. We switched the controls from the right hand to the left hand and got a new joystick that works better for me. The left hand driving will take a while to adapt to, but at least so far I haven't ruined any walls, knocked over any furniture, or torn off any baseboards. We are also going to add a couple of knee switches programmed for some specific functions like getting me back to an upright position from a full tilt in space position.

On Wednesday, some appointments became available for vaccines, so I was able to snag one for yesterday. It all went smoothly, absolutely no pain or side effects yet. Keeping my fingers crossed.

I'm still working through the hospital bed procurement thing - so many functions/options to consider, but the providers here in my town have extremely limited choices. I'm widening my search area. It's pretty frustrating.

Otherwise, all is quiet here. I hope everyone has a good week.

 

[TippiLeigh]

Hi all! It’s been quite a while since I’ve last checked in. I recently got a third opinion from Stanford. They also agree with possible PLS, but won’t rule out ALS for about another year....ugh. I go back to UCSF tomorrow for one of my regular follow ups. A few months ago I was going through just a big mental breakdown (pandemic, death of my brother to the pandemic, body not working, unable to work, kids doing distance learning at home, etc etc....) Anyway, I started online counseling and my PCP felt I should go on depression medication, so I decided to wean off of the Baclofen to start the antidepressant. (I was afraid I’d be a total zombie on both) I was doing OK for a little while off the Baclofen, but my spasticity is off the charts now. I look like I’m having constant little myoclonic seizures. It’s so uncomfortable and of course more unstable when I walk. I’m going to speak to my neurologist about it tomorrow. I’ll probably just go back on a low dose of Baclofen and see how it goes. I just want to make sure it’s OK to take both or maybe there’s another option.

Hope everyone affected by the freezing weather is doing OK!! I have friends in Texas that are having a terrible time. I feel so bad for them. I’m in central California so we’re not affected much. Today was in the 60’s which is cold to me because I’m a sissy-lala when it comes to the cold LOL.

 

[lisa g]

I'm late reporting in totally missed last week, to engrossed in the impeachment trial only to be let down again. My only solace is I believe in karma, what goes around will eventually come around.

I started PT and am very happy with the therapist. She did extra training in neurological diseases so she knows what to and what not to do with a PALS. Everything was going great until yesterday. I was standing in the kitchen and just turned to reach for something. That's all it took to feel searing pain in my lower back. The same thing happened a couple of months ago. I was in tears couldn't walk, sit or stand. My husband was able to get me back to bed and got some ice and the heating pad. I spent the rest of the day there.

My daughter and her husband built a new home and closed yesterday. She was so excited and wanted to show me the house. So today with a salonpas and back brace I hobbled to see it. Afterwards we needed some groceries. I told my husband I was in so much pain there was no way I could walk through the store. I decided I'd have to use one of the electric carts. I have to say that was the first time I've used one and I sucked at driving it. If that's a prequel to when I need a pwc watch out people I will probably mow you down.

I'm back in bed with my new buddy the heating pad. Hopefully tomorrow the pain will ease up.

Until next week hope everyone stays safe and anyone caught in the horrific weather in Texas I'm praying for a speedy warmup.

 

[KevinM]

Jessie, I too just hate that you’re having to find a new home for your beautiful little kitten, but I understand.

TippiLeigh, glad you checked back in. It’s always good to hear from folks who haven’t posted in a while.

Lisa, I am so sorry about your excruciating back pain. I sure hope it eases in a few days.

Following on my topic of the big lies that get told by politicians and accepted without question by so many, I’m reminded of a great Mark Twain line, in which he observed that “a lie can travel half way around the world while the truth is putting on its shoes.” Kevin

 

[KimT]

Lisa,
I'm so sorry about your back. I've done things that I thought wouldn't hurt and ended up in my lift chair for a week with ice and heat. When I sprained my right ankle, I used one of those carts in Lowe's. It was when I was remodeling and the clerk ignored me. It was like I was invisible. Maybe I should have run into his desk to get his attention.
Hopefully, your pool will help. I'm patiently waiting until the weather clears up and the pool temperature goes above 85. The heater is on, so I'm told, and people are swimming early in the morning but the temperature needs to be above 85 for my muscles to handle it.

 

[EricInLA]

My Wednesday check-in happens on Friday this week. Nothing exciting going on here in SoCal. Which I guess is good. Our weather is so boring - I wish we had some indication of winter, but we don't. But considering the misery going on in Texas, I'm not complaining.

Wife and I ate out with some friends last night - it was the first time we'd been in a restaurant in a while. It was one of these fancy places with a romantic courtyard -- since only outdoor dining is permitted -- and it was just a really nice evening. Any time the waiter would approach (donning mask and plastic face shield), we'd rush to put our mask on - seems like the right thing to do, but so funny and awkward too.

Lisa - I hope you have the patience to let your back heal, and that it heals quickly. I know how painful that is.

TippiLeigh - So good to hear from you. I will tell you that I was concerned about whether I could go on an SSRI (my happy pill) and trazodone (my sleepy pill) together, and I've had no zombie issues at all. They seem to be working well together. Hopefully your slow uptake will work well and you can be on both of the meds that you need.