Webinar on breathing

[MupstateNY]

Tomswife, I just learned about stacking this week from my new speech pathologist. But it was very confusing. She said only to do it when recording for message banking.

As I understood it, you take a deep abdominal breath (like for singing) and then you take sort of additional sips of breath in order to get more air total into your lungs.

That might not be quite right!

 

[Nikki J]

That is essentially how it works. I have no idea why you were told to limit it to message banking. Of course you also have to exhale. Do it like you do with clinic svc steadily and slowly

 

[Tomswife]

They took our question. Said leave provider.

 

[MJT]

Wow, Nikki. What a wealth of applicable information. Thank you very much for the link. We've been struggling with different RTs, and finally got a new provider last week through Medicare. The new RT wasn't much better than those with the Aetna-sanctioned group, and though he brought a new, more comfortable mask, he also brought a ventilator that had been recalled!

 

[MupstateNY]

The webinar was excellent and gave me the can of spinach I needed to advocate for my needs. I filled out the form to request an appt in Philadelphia, and I booked an appt with a different pulmonology group (Guthrie) for tomorrow!

 

[KimT]

While I agree with everything the presenter said, I'm a little disappointed that PALS/CALS must do so much to advocate. Don't get me wrong, I've been educating people about ALS since my diagnosis. I just think more doctors, nurses, and other medical professionals should attend these seminars and ALSA should be doing a lot of what PALS/CALS are doing.
Many parts of the Country are better off as relates to this.

 

[Tomswife]

Kim. I agree. I dont have time to be an advocate. And tom is unable.

 

[MupstateNY]

You said it, KimT! It's shocking how unhelpful some providers are. For example the pulmonologist I saw who agreed to order the suction device but "had no idea how to order it."

 

[lisa g]

I'm amazed at how little some providers know about ALS. I was in the hospital last week and was surprised how little they knew. I told them that I had a port that they could use for IV fluids. I was told that not all nurses knew how to access a port so they turned me into a human pin cushion. Then the issue of a trilogy came up.I told them I used it at night. I was told that they didn't have a trilogy but they would provide their equipment. They brought it in but couldn't get the correct settings that I was comfortable with, so they said they'd give me supplemental oxygen. I explained that I didn't need oxygen. So to not argue or confuse them more my husband went home and got my trilogy. You definitely need to educate people on ALS and be your own advocate.

 

[MupstateNY]

Oh gosh Lisa.

 

[affected]

yep being in hospital was a nightmare because my Chris couldn't speak from so early. So little understanding of any part of disease And when you can't speak you can be treated as tho the reason is because you have the mentality of a baby. sigh

 

[Tomswife]

Lisa. Sorry you were in hospital. Hope you are ok now and home.

 

[Bestfriends14]

Yep, Wayne's hospital stay was frightening. To transfer him to another ward, they laid him flat on his back, took off his bipap, and put on an oxygen mask with an oxygen bag. Yup, pure, one-way oxygen. I had to rip it off his face and put his normal mask back on, with his bipap. This proceeded an argument in the hallway about how they could not transfer him with a bipap because he had covid. Duh, put a mask over his bipap and put a shield on him. To think I was going to go home because I was tired. If I had gone home, he most likely wouldn't be here.

 

[Tomswife]

Bestfriends. So sorry. You are a fighter for your guy.

 

[lgelb]

Second that! It's unfair, but CALS are often all that stands between a PALS and no PALS, or permanent injury.