CALS Roll Call Continued

Robin, hope everything went OK with your VA visit. I agree about being nervous about COVID. I am wearing a mask everywhere I go again. Can't help but feel angry with people who refuse to get the vaccine and end up in the hospital with COVID endangering health care workers, as one of my PALS' friends did.

Mary hope the wedding planning is going well.

My PALS has been having a problem with a rash on his ears right where the bipap mask straps hit. I have tried putting ointment and even cotton balls to cushion the straps. I've also been changing out the masks to hopefully help the situation. I suspect this is a common problem with PALS who are on bipap 24/7 for years. For mood enhancers I drink wine and he's been asking for some THC and stout which I give him thru the feeding tube. Why not.

V
 
Totally agree V - I'm excited that we got a new shipment in the country finally. Very hard on the other side of the world! I was booked for my first dose on Nov 3, and suddenly I have an appointment for pfizer tomorrow. I feel a responsibility to the frontline workers who would have to look after me or anyone I infected too, horrible.

That strap is a problem - you may need to get some gel dressings, I would chat to your pharmacist, take a photo as they are often a great resource.
THC and stout for PALS = PERFECT

Think of you both Mary and Robin too
 
Other ideas for the rash: a muslin skullcap and/or "gentle paper tape." If the ointment doesn't pan out, since it's kind of an oil/grime thing, dabbing with Briotech might work also.
 
My husband has never been much of a drinker, but if he wanted it, I would definitely fix him anything he wanted!

Our VA visit went great. It felt very safe. They aren't allowing any visitors but I was able to accompany my husband (without anyone hassling me, which was nice). And I was even able to go into his appointments, which had been an issue previously. They tried to do a pulmonary function test, but he can't make a good seal with his mouth. And his throat constricts when he tries to exhale quickly so overall it was not very successful. But the "messy" results were pretty much the same as last December so I guess that's good! And the respiratory guys were so nice and patient.

Then we went to the dentist to try to get a thin mouth guard with "wings" to help my husband not bite his checks. He has been using one from the store that you make at home. It works OK but is so bulky. My dad is a dentist and suggested getting one with wings. The VA dentist (who was fresh out of dental school and thrilled for an interesting case) was so excited to work with the prostadontist to custom make it. We'll see how it turns out in a couple weeks! Again, he and the dental tech were so nice and helped make it all work even with my husband's saliva and swallowing issues. I was so impressed with their attitude and how accommodating they were.

Now we are at my parents' cabin for a few days. It should be a nice relaxing getaway!
 
RMT, I hope you are having a good time at the cabin. As far as the wedding goes, we are still waiting for the proposal (she knows it is coming) which should happen at some point. Jim...or anyone that has a PALS that used Dragon....how is the best way to learn Dragon. My PALS purchased the software recently and is trying to go through some of the tutorials on the vendor website but it is time consuming. ...Also the hospital had a nice plasticy piece of tan adhesive holding my PALS G tube....but it is time to remove this and it is too expensive to purchase these. I am going to wrap a piece of duct tape around the g tube and fasten a safety pin to the duct tape and then his shirt. I have seen this done before. Anyone have any other thoughts on securing a G tube? Thanks!
 
Try searching here Mary I know some great innovative ways of holding it have been shown at times. There is a PEG forum area you could look in too. We just used a medical tape until we changed to a button, so we were pretty boring on that count 🤣

I knew my Chris was going to propose, but just not when. He was waiting for what he considered a 'lucky' date 💙
 
I wouldn’t use duct tape but medical tape or even paper tape. The duct tape is going to be hard to change without pulling or even possibly damaging the tube we used paper tape and safety pin for my sister
 
@Mary2 - Darcey learned it pretty easily from the commands worksheet that came with the software. First a few things to get out of the way...
  • Version of Dragon - We used the Professional version as it had a much higher rate of understanding and was worth the premium in cost.
  • Type of Headset - Do not skimp on the quality of the headset. You can go online to to their website to find "recommended" headsets. Dragon is only as good as its ability to understand you.
  • Background Noise - Dragon will understand one's voice much better if one's voice doesn't have to compete with loud background noises.
  • Train it to Your Voice - Each of us speaks differently and with different accents and intonations. Use the training sessions (where you read its supplied text) so it can become familiar with how you pronounce words.
Beyond those things, it is mostly about memorizing how to use it. It has a grid system that you use to point to an area for the mouse pointer... then commands that do mouse actions once you get where you are at. There are commands that allow you to open applications. I scanned and put a copy of the command sheet on Darcey's desktop so she could refer to it as she needed to. I wish I could help you more... but she used it entirely by voice, wherein I used it with a mouse and only used the voice portion to type.

I might also suggest that you look through YouTube videos, too. Sometimes the manufacturer provided tutorials are not the best of what is available. And Mary... you could try to spend some time learning it, too. You'll have the advantage of being able to use your hands to pick up a command reference sheet and then play with it to learn it. Pick single tasks and learn how to do them. Then show your PALS what you've learned and help him learn that task. Practice and then repeat with a next task. Find out what he wants to do and then break it down into smaller pieces. If you learn a piece at a time, you'll be successful. If you try to do everything at once, it will feel impossible and could easily break one's spirit.

My best...

Jim
 
Thanks Jim...Yes after much mulling it over PALS did purchase the Professional version of Dragon. He is very pleased with the dictation ability. He is very particular and wants to use gmail instead of outlook. Me....just show me which buttons to push...I could care less about software programs. But tonight he was able to send several emails in GMAIL so he was pleased. I will take to heart what you say about trying to learn Dragon myself. It is probably lonely for him to be learning on his own. I will look at the command reference sheet in the morning and stay engaged. (This will be a challenge for me because we have company coming and there is soooo much else to do!).
 
Great news Mary 😊
I agree, if you learn it to, then you get to do this together, and if there is some problem you can both understand trying solutions.
Wonderful he got some emails off, it will give you both freedoms!
 
Mary, these worked very well for us, lasted a good amount of time, and were easy on the skin. You can find them on line by googling the name.

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Thanks Kate, I will look for these! I set the GTube up with paper tape and a safety pin tonight...first time ...and I have fears that the
Personal Care Assistant and my Pals will forget the tube is safety pinned to his shirt and pull his shirt off! This is much better!
Thank you!
 
8 pm and time to begin the night time ritual. We are at the point where I can't sit 30 minutes now without PALS wanting something.
I miss my evenings ....often I go through this nightly ritual with PALS and then go upstairs and flop on the bed and don't wash my self up. Amazon music keeps me going. The music is my joy...
 
Mary, I hope getting used to the feeding tube is going well. I know it really improved the quality of life for my husband (and so also for me!). Hopefully it can make your days and nights a little easier

We had a nice time at the cabin. It was great to spend time with my parents, and we got to relax for a few days. It even rained! We haven't had rain in forever, so it was a nice change. The air felt like fall! I'm looking forward to the cooler, crisp weather that fall brings, but I will miss the warm sunny days of summer too.
 
Robin, so glad you had a lovely time at the cabin. I cherish those moments when my PALS was better and we could do things.

I think we are entering a new phase of this illness now. My PALS is nearly always uncomfortable. He has a dark spot on his sacrum which I am hoping will not turn into a bedsore, but with sitting and lying it is hard. I have bought large sacrum pads and put one on last night, but he still complained. I had an alternating air mattress but he asked me to remove it; I put a pad on his bed and he was still uncomfortable. I have a foam pad on order which might work together with the alternating air mattress. We'll see. In the meantime last night I had him on his side and told him this morning he needs to be moved periodically.

Meanwhile I've been up every night lately dealing with his issues. He has to pee, or he needs me to adjust the mask, or he wants me to move him into his power chair. If I'm lucky I get about 4 or 5 hours of uninterrupted sleep. He hasn't been outside in days because he says he is cold (it has been in the 70s and 80s here) and needs to stay indoors with a blanket, at the same time I am flushed with heat. I'm sleeping with an ice pack every night now.

This has been so hard on me. I feel like my spirits are flagging lately. We're going on 6 years now since diagnosis, and it's a long-term situation. I'm trying so hard, as I keep telling him, but I feel so exhausted.

V
 
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