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

[KarenNWendyn]

Dee Dee I’m so sorry. Many PALS can have the g tube placed by interventional radiology even with much poorer respiratory function than required for endoscopic (PEG) placement. If you want a tube, I recommend you look into this.

 

[Dee Dee 0617]

Thank you Karen, and again I am so sorry to have gushed like that, I am not one to wallow.

 

[KarenNWendyn]

Gushing is totally ok here.
Also, it’s totally fine to change your mind on things. Even Advance Directives can be overridden if you are in your right mind. An attorney told me that. So if you told a doctor early on that you didn’t want a feeding tube, I’m actually somewhat shocked they would hold you to that years later. It would have been appropriate for them to say “hey, your breathing has declined. If you’ve changed your mind about wanting a feeding tube, now would be the time to get one.” But that’s water under the bridge. Anyway, gush away if you need to.

 

[KimT]

I agree with what Karen said. I know many PALS who changed their minds, even after waiting too long. I would pursue it. It can certainly benefit your quality of life.

 

[Dee Dee 0617]

It's snowing again. There is four feet of it on the ground, and I could just scream. (If I still could ) I want to get better, I want to go skiing! I had a video visit with my neurologist this morning. He told me I could stop taking both the riuzol and radacava, it was up to me. I don't know what to do with that. He asked If my arms or legs were still moving and I told him not really, so he said well the riuzol wasn't doing what it was said to do. The radacava is supposedly causing depletion in lung capacity. He had nothing concrete to back up that statement, just that he and some colleagues had been talking about what they're seeing. Hopeless Wednesday for me.

 

[KarenNWendyn]

Happy Wednesday everyone.
Snow here last week, rain off and on this week. I’m getting good at planning wheelchair rides with my dog between raindrops. Trying to stay positive despite progressive disease progression .

Dee Dee, regarding R and R, I guess you could question what they are doing for you at this stage. No one really knows the answer.

 

[swalker]

I am doing OK. I have recovered from the lower respiratory infection (probably flu) I had the first week of January. That was scary! I had the flu shot and I really think that helped.

I am starting to adapt to the non invasive ventilator and have tried using it for part of two nights now. It is different, but overall it really helps.

My younger brother died unexpectedly of a pulmonary embolism two weeks ago. We went to Dayton, Ohio last week for the first service and will go to San Antonio, Texas for the funeral next week. He was a special guy and it is very hard to lose him.

We flew with my wheelchair for the first time. My Permobil F5 is still in the shop for the damage it received when stolen over Thanksgiving. I took my backup Permobil C500 Corpus 3G wheelchair to Ohio. It was damaged on the return flight and will not be repaired in time for the flight to Texas for the funeral. I don't want to fly with my primary wheelchair (Permobil C500s VS), but may have to.

The airline has been great about working to fix the wheelchair so far, but it looks like it will be out of commission for a month or more.

With all that is going on, I have not yet had a chance to go skiing yet this season. I am looking forward to skiing sometime in mid February.

Steve

 

[Nikki J]

Steve I am so very sorry about your brother. It is terribly hard to lose a sibling especially a younger one I think - and so suddenly. My deepest condolences

 

[Tkthiede]

It’s Wednesday already? The wind has been horrible this week. Blowing on a level of 30-40 mph. It cuts to the bone. So cold. 🌬 I’ve been using my wheelchair more this week. But I’m having a terrible time getting it out of the van. A couple weeks ago I ripped the door off the track and messed up the electronics. I think part of it is because our driveway is very steep and it messes with the weight in the wheelchair. But mostly I think it’s that I stink at driving it. My husband is always grumbling at me when I try to unload. I am using the chair to try to save some energy but I get so stressed that I’m not sure it’s worth it. Otherwise I’m doing ok and carrying on as usual!
DeeDee, I worry about the decline in lung function too but I had not heard that Radicava might have something to do with it. I’m seeing the pulmonologist Friday so hopefully he will have some ideas because my breathing has really changed.
Tammy

 

[Statius@]

We're still enjoying upper 60s and 70s here in our new winter home in Tucson. Having my daughter as few blocks away has been a real boon. The VA here seems understaffed for the number of vets in the area. Hard to reach people or get certain kinds of tests, and they lack an ALS clinic. The IOWA City VA was much more responsive. Ivan our black lab mix is getting used to being confined in a fenced, if good sized, back yard, instead of roaming our six acres in Iowa.

 

[KarenNWendyn]

Steve, I’m sorry to hear about your brother.

 

[Doglady]

Wonderful Wednesday, again! How quickly these weeks fly by. I’ve been using a standing lift for transfers for a few weeks. Think my UTI is finally gone. We’re enjoying a little warm spell today with temperatures in the mid-30’s. LOL. Got recertified for another month of Medicare home skilled nursing and OT care. It’s been so helpful to have these visits for the past few months. Sounding pretty boring so better sign off for now.
Hang in there, everyone!

 

[nona]

Dee Dee and Steve, thinking of you and your losses. I have four younger sisters, Steve, and I can't imagine the pain of losing one suddenly. I'm so sorry.

 

[KimT]

Oh Steve, I'm so sorry about your brother. Praying for you on this next trip.

Dee Dee, You are the one who gets to decide....remember that. I had to make a decision in 2016 when Mayo told me to stop taking B-12 because my levels were high. Well, that was the point and I'm still taking it.

 

[KimT]

Meanwhile, here in sunny Florida it's so cold I didn't go out today or even shower. Just sat around watching TV.