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

Kim- my granddaughters school is Southeastern University.

Jessie- you go girl! Looks like fun but a little 🥶 colder than I like.
 
Jessie, I am so glad you got to go out skiing! It looks like they used a biski. It is a different make than the one I use, but I am familiar with that one as well.

I hope you had a great time! It is one of my favorite things to do. I skipped skiing this year due to Covid, but really look forward to doing it again next year.

Do you might letting us know how the biski was configured to support your neck and head? That is the part I have the most trouble with!

Steve
 
Happy Wednesday everyone.

Jessie - How wonderful for you to enjoy the slopes. The last time I was at Sunapee was during my senior year in high school. It was a heck of a weekend.

As an update, we are back to being truly ops normal in the Heartland. I haven't coughed up any blood since I was Friday from the hospital.

My son came out to stay with his mom while I was in the hospital and to visit me. It was great seeing him face to face for the first time since December 2019. He headed back to Colorado Springs Tuesday morning.

A few notes from the hospital
1. They finally bring you a can of Jevity for your first meal in 24 hours and you ask them where the bolus feed extension tube that will connect to your mic-key button is and they look you in the eye and say "Can't you just use a syringe". :(
2. Two hours later when they come back with the extension and you ask for water and they look you in the eye and say "Oh, we need an order for water.":mad:
3. They bring your meds in little packets. You tell them you can't swallow those. They need to be crushed and mixed with water. They come back holding a small 2 oz dixie cup with an eyedropper in the cup. I ask where are the rest of the meds and the liquid Vitamin E. They say they are all in the cup mixed with water. Vitamin E, Vitamin C, Lactobacillus, and a new pill for GERD, something with magnesium. (I have never had GERD by the way.) Just pour it in they say. I tell them that is not a good idea. They say it will be fine. Of course, Vitamin E and at least one of the pills are not water-soluble. Yup, you guessed it. Massive clog at the tube connector, which took me 30 minutes to resolve.🤬

That's all folks
 
Holy sh-t, Dave, it’s a wonder you escaped the hospital before more damage was done.

So glad you saw your son, the bleeding episode has stopped, and that you are back in the comfort of home. K
 
Hello friends (yes, I've been listening to a lot of Jim Nantz), reporting in from sunny LA. I've been really busy with work and family stuff (and watching the NCAA tournament) and so haven't piped in for a while. In fact so busy even today that 6 or 7 other entries on this thread have been posted while I've been drafting this! Anyway our big news is my middle son was admitted to attend Cal Poly San Luis Obispo -- in a year where acceptances at good schools have been hard to come by. He had to audition and interview for a spot in their Music Dept, and he got it! We were thrilled - he had been accepted to some backups -- but this was the first one that he really wanted to go to. Still waiting to hear from USC, but they've had a record number of applications, so we're not counting on that one. And I'm not sure he would go there anyway, now that he's in at Cal Poly SLO. I'm happy he will only be a 3-hour car drive away, and in a beautiful location where I can go wine tasting just up the road in Paso Robles.

I continue along with my slow progression, trying to get out and do fun things like hiking and walking on the beach while I can. (picture below from our beach walk this past weekend - it was a beautiful day on the Santa Monica Bay). I'm still mulling over whether to participate in the platform trial, though the longer I 'mull', the more likely I'm deciding by default not to do it. I have mixed feelings about it. In the meantime, I am continuing my advocacy work with I AM ALS. I think we're gonna get some significant legislation passed this year to fund research and speed up access to drugs, which is all good.

Lisa - I love that you're getting to spend time with your grandkids. That sounds so awesome.
Jessie - Those pictures are INSANE. As in, insanely AWESOME. I am so happy you were able to ride down a snowy mountain. That just looks like so much friggin fun. And am I correctly spotting a bottle of Jagermeister in your friend's hand? Scandalous!
Dave - I'm happy you survived that ordeal and ops have returned to normal.
Kim - Your skin already looked great. But I'm glad she helped your sore foot. I had a similar experience with someone forgetting I had ALS. In my case, it was my son. He just totally forgot. I loved that.
 

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Jessie - that is so cool that you got to get out on the slopes! It looked like a glorious day for you, and for those assisting you.
Kevin - I read about the expected UAP report, I'm sure it will be a very interesting read!

Last week, 7 old friends (I met most of them back in around 1976, when I moved to Chicago after college!) traveled here from several parts of the country - all of us have been fully vaccinated. We have all traveled with each other to various places over the last several years, until Covid. All 8 of us headed down to a lodge near the north end of Yellowstone Park. We rented one of the ranch houses at the lodge which was a great set up for us. It was great to have face-to-face contact with old friends. We cooked all of our own meals, there was no shortage of cocktails, and we watched the stars at night from our outdoor patio with a fire pit. It was a great trip, although a little bittersweet for me, since it made me realize there is really no way I could do any of the significant trips we had talked about doing pre-Covid.

We took a day trip into Yellowstone Park with a guide so that we could all be in one vehicle. It was a gloriously sunny day with temps in the low 50s, which is pretty unusual for this time of year there. It's probably the best day I've ever had in Yellowstone in terms of wildlife sightings. We saw two wolves on an animal carcass several miles inside the park boundary, then saw moose, elk, coyotes, a fox, bighorn sheep, and lots of bison. Unfortunately, we did not see any bears or mountain goats. It was a very long day for me, but well worth it. I will try to attach a few pics to this post.

Since returning home, I've just been laying low reading and resting. I'm really exhausted and I feel like my progression has taken a nosedive over the last couple of weeks. I have my quarterly ALS clinic scheduled for next week.

Have a good week, everyone.
 

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I love reading everyone’s updates! I haven’t been great at updating lately, but I’m trying to get better at it.

I haven’t been having the greatest time lately. So I’m still in investigative & waiting mode before they’ll definitely say PLS and not ALS. I’m working with neuromuscular neurologists at both UCSF and Stanford. Everyone once in a while, one of the doctors will want me to try another test, so this last time they had me do a paraneoplastic panel and I came back positive for the AChR Ganglionic Neuronal AB, S. For a brief moment in time I was relieved and thought, maybe they were wrong all this time and I don’t have MND! I was wrong...womp womp.

Apparently, this antibody doesn’t have anything to do with MND and it’s affecting a different part of me altogether. So they said, “You’re just lucky and have TWO things going on, which isn’t uncommon with autoimmune and neurological diseases.” And to add icing to the cake, this particular antibody has a high risk of cancer, particularly lung cancer. My brother, nephew and two different grandparents all died from cancer, including several cousins, so with that history they sent me for a chest CT today. I haven’t gotten the official report back yet, but I asked for a copy of the images to bring home with me. My husband is an oncologist, so I asked him to look at them and he said he can see about 8 or 9 lung nodules. But he immediately told me not to panic. It doesn’t necessarily mean it’s cancer. We live in an area with bad air quality so it’s possible I’ve had these forever. They’re also fairly small so they probably couldn’t even be biopsied at this point. So he predicts that they’ll just monitor me and have me redo the CT in 3 to 6 months. So now I’m anxiously awaiting the radiologist’s report and subsequent neuro’s call.

Other than that, I’m kind of going through what feels like a wave of downward progression but could also just be that my meds are wacky and i don’t have it dialed in right. If I don’t take enough Baclofen, I’m so stiff and I get myoclonus all over my body, but if I take too much, I have no spasticity to keep me upright! I’m getting a lot weaker in my legs. I used to just have weakness in my left leg with spasticity up to about my knee, now that has gone all the way up to my thigh and has also traveled to the right leg up to about the calf. I‘m starting to have daily falls. Not major, but enough to usually bring me to the ground in an ungraceful attempt to catch myself and not do serious damage, so I realize I need to use my walker more inside the house. I prefer to furniture and wall surf because we have a very narrow, older house and it’s kind of clunky getting the walker around, but I know I’m playing Russian roulette. I also think I’m in denial about it all so I’m being stubborn.
 
TippiLeigh- I fully understand being stubborn and in denial. I am still mobile but have a balance issue that I'm working on in PT. My husband has bought me a rollator and transport chair that are still in boxes. He also bought me a cane and electric scooter. None of these items I use. My thinking and yes its not sane, is that if I start using these things I'm giving up and letting the beast win. I know in my mind that this isn't logical and at some point I'll have to re-evaluate my thinking. But for now I haven't had any falls except my cat tripping me and I enjoy doing my morning walks. When I find it gets to dangerous for me I'll relent and use the equipment.
 
I am so glad to see such a good number of you beautiful people checking in! The news is not always cheerful (how could it be?) but I feel communication among us is so very important.

Ah, stubbornness and (semi) denial—two of my lifelong character traits that have been turned up to 11 since my diagnosis. For those with slow progressions or those early in the disease, it is often easier to default to these attitudes as a sort of psychological sedative. The stubbornness may persist for many of us—I’m sure it will for me—but the denial part only lasts so long. That curtain shreds more and more with each stage of progression.

Just a couple of shoutouts, though everyone had something important to say.

Eric, great to hear from you after a brief hiatus, and I know your family is bursting with pride and excitement at your sons acceptance into the Music Program. Uber cool (as my daughter used to say back in her teen years)! Is his talent vocal or instrumental?

Fusia, that was an amazing day of wildlife viewing at Yellowstone. We’ve seen everything you mentioned but wolves, but not on one tour. Thank you so much for sharing!

Best, Kevin
 
Steve, here's a photo of the rig. And a video of the end of the first run, in which you can hear my mother saying "oh my God."

Eric, that's great news about your son. It has been a challenging year for seniors. And yes, a few of us had Jager after. Tradition! Except now I get mine 2 cc at a time. See pic.

Fusia, what a great visit you had. I'd love to see that wildlife.

Tippileigh and everyone else, NO FALLS!

Dave, that is crap.

p.s. I got the Johnson and Johnson vaccine today!
 

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Bill, I forgot to ask how you’re feeling today after the second Pfizer dose? K
 
Jessie, that is wonderful! Thanks for sharing a picture of the biski setup. It gives me some ideas of what I can do here. I decided to skip skiing this year due to Covid, but look forward to doing it next season. I really enjoyed the video!

In case you have not yet seen it, here is a video of me in a biski in 2017. We went pretty fast on that run. It was glorious!



Steve
 
I am right there with y'all on the stubbornness and denial. I like Kevin's term "psychological sedative". It has its benefits. I don't want my self-identity to be 100% ALS. It's certainly part of who I am, but I'm also trying to maintain some degree of normalcy for my family as long as that is possible, and then as I progress, to whatever extent I can. It's ironic because after my father had his first bout with cancer, they did surgery to remove the tumor and then told him he needed to return after 6 months to get scanned. They wanted to make sure that if it came back, they caught it early because that type of cancer comes back strong. He was a stubborn guy, and never went back even once. So sure enough, when it came back 5 years later, it had already spread and he never had a chance. We were upset with him that he left good years 'on the table', but then someone gave me a different perspective: he lived his life the way he wanted. By constantly going back to the oncologist and waiting for scan results, he would be living as a 'cancer patient', and he chose not to do that. I'm not quite that stubborn, but now I sorta get it.

Jessie - Your smile in that picture makes me smile. And the Jager makes me thirsty. I haven't had the stuff in years, though I occasionally take Robitussin for a cough - not too different, as I recall. I think I'm gonna go buy some Jager now. Thanks for the video.

Kevin - My kid plays a number of instruments, but his main one is saxophone (alto and tenor). He's really into music theory and throws words around that I don't understand. He makes me listen to jazz in the car and now I realize I like it. The other boys play trumpet, so our house sounds like a jazz club.
 
Hi, Kevin. Thanks for asking. I felt fine the day of the shot, and next afternoon started feeling like I had the flu - achy - to the level of "Gee, I feel like I'm sick." Better today.

Dave, that sounds really awful.

TippiLeigh, I am very sorry that you are going through such a rough patch. You have so much to deal with right now. Please make figuring out how to not-fall a priority.

Nona, that looks amazing! Happy that you had that opportunity. :) (You also, Steve.)
 
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Great to hear, Bill. My second dose is next week, so we will see how it goes.

Jesse, your outing has had me smiling all day.

Eric, that is so cool about your son’s talents. Florida State has a very well known music/jazz department, and some of the jazz shows put on by the students and faculty are amazing. I’m sure you will enjoy many incredible concerts while he’s in school. K
 
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