CALS Roll Call Continued

Mary2

Active member
Joined
May 1, 2021
Messages
83
Reason
CALS
Diagnosis
04/2021
Country
US
State
GA
Jay Fusion with a RoHo insert. I tried again this morning. It does over inflate....but I am not quick enough.
 

JimInVA

Senior member
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Joined
May 29, 2014
Messages
956
Reason
Lost a loved one
Diagnosis
04/2014
Country
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VA
City
Poquoson
Mary,

The air filler on our Roho had a metal end piece that twisted open to fill and closed to seal. I used a hand pump that had a firm rubbery type of end that went onto the fill stem. Once in place, I twisted the end piece counter clockwise to open and began to pump. Once done pumping, I'd twist that same pump end piece in a clockwise manner to close and seal. Once closed, then... and only then... would I remove the hand pump from the filler stem. Maybe all you need is the hand pump.

My best...

Jim
 

Mary2

Active member
Joined
May 1, 2021
Messages
83
Reason
CALS
Diagnosis
04/2021
Country
US
State
GA
Thanks Jim, I will try looking for a different hand pump. That might be the answer!
This Wed, PALS has spent over 2 hours trying to use Dragon. Does Dragon work with BiPa; and a Trilogy? He is using a good microphone but frequently words are misprinted. PALS was a software guy so he is usually patient with these things, but he is physically weaker now. We both have a copy of the book, Dragon Professional Individual for Dummies.
 

JimInVA

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Joined
May 29, 2014
Messages
956
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Lost a loved one
Diagnosis
04/2014
Country
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VA
City
Poquoson
Mary,

Darcey used a nasal pillow with her Trilogy BiPAP for daytime use... and WHILE using Dragon. I can't stress enough how important the microphone is. Dragon has a recommended list. If the one that you are using is not on that list, that might be your problem. I have a Sennheiser Wireless Headset that Darcey used successfully until her voice was no longer strong enough to be recognized. They are expensive. So, I would be glad to send that to you to try, if you would like to see if that might help.

I also believe that I have two of the hand pumps that I used for the Roho. I'd be glad to look for and send you one of them for you to keep. Just let me know if that might be a help.

Also... for anyone interested... I have just received our Large Liko Hygiene Sling back from the last person who had borrowed it. Once I run it through the wash, it'll be ready for the next person who would like to try it out. Just let me know.

If I can help with anything more, just give a shout!

Always, my best...

Jim
 

Mary2

Active member
Joined
May 1, 2021
Messages
83
Reason
CALS
Diagnosis
04/2021
Country
US
State
GA
Hi Jim,

Thanks for the response. PALS was using the Microphone and headset he uses to listen to audio books. Obviously, this did not work. PALS has a Sennheiser head set that he purchased to use with Model Talker. He now understands he needs to use the Sennheiser for Dragon as well. Tonight he used the Sennheiser and Dragon worked much better. I looked at my hand pump and it is rubber tipped at the end, so we are going to sit my PALS up in the bed and have him watch me inflate the cushion to see if he has any suggestions. Thank you so much for your offer to send equipment to us; I think we are okay for now.

Thank you so much,
Mary2 and PALS
 

JimInVA

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Messages
956
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Lost a loved one
Diagnosis
04/2014
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VA
City
Poquoson
Mary,

Remember.... twist it closed BEFORE you remove the hand pump from the stem.

Jim
 

vltsra

Senior member
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Joined
Nov 12, 2015
Messages
549
Reason
CALS
Diagnosis
11/2015
Country
US
State
CA
City
San Diego
Checking in again. I've made a point of trying to keep up with my cycling while caregiving and have tried to do a longer ride on Wednesdays. Today was the perfect day for it; it has cooled down a bit and there's a hint of fall in the air. A welcome relief from the heat. I did 48 today.

Yesterday I spent the day with the electricians here trying to figure out why our caregiver's mini fan blew out the power in the bedroom. Not that we don't have a lot if things plugged in here.

My PALS has been complaining a lot about pain on his backside. I am trying everything. I have him on a support pillow that tilts him on his side to take the pressure off. I don't see a pressure sore, but he is just skin and bones now. I've put salve on it and have a foam mattress.

Lately he has been spending more time in bed. He hasn't been out of the house in weeks. He tells me he doesn't want to. Don't know if he is giving up or not.

V
 

rmt

Distinguished member
Joined
Sep 18, 2019
Messages
126
Reason
CALS
Diagnosis
07/2019
Country
US
State
WA
City
Seattle
Mary, I hope you can get everything working!

Jim, you are amazing! You are so helpful and generous and positive. I strive to be more like you every day.

V, I'm glad you were able to get your bike ride in. I bet it felt so good to be out in the cooler fall air.

It was another uneventful week for us, which was great. My husband's mood has been so much better lately and he is more engaged which makes the hard parts of life a little easier. He loves watching football and baseball so this time of year is heaven for him. Luckily I also like watching football and baseball so I'm enjoying it too.

Someone on another thread recommended the CoaGu pill crusher. My husband has been using the little plastic ones you can get at the store and they just don't get everything as crushed as needed for his feeding tube. So we decided to try out the CoaGu one, and it is fantastic! It is like a pepper grinder but for pills! Definitely a good upgrade.
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
13,479
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
V the drain on a PALS energy is so huge, and if he has pain it must be more draining. I never like to say a PALS is 'giving up' as it seems like if only they did something different they would beat this. I hope you can have as much quality time with him as possible in however long you have. So hard when he is in such a place.

Mary sounds like you are working those things through, keep us updated.

rmt so glad you have had a good week. my Chris took very few meds so I just crushed with a small mortar and pestle and slightly warmed water to soak after. some are slippery though so I can see a little grinder would be great!
 

Mary2

Active member
Joined
May 1, 2021
Messages
83
Reason
CALS
Diagnosis
04/2021
Country
US
State
GA
Today was my son's proposal in a garden with her family hiding in the bushes and among the trees! But she did say yes! So the wedding is on! How it is going to go with Covid and with my PALS I have no idea!
 

vltsra

Senior member
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Joined
Nov 12, 2015
Messages
549
Reason
CALS
Diagnosis
11/2015
Country
US
State
CA
City
San Diego
Congrats Mary, how romantic! It will all work out somehow.

V
 
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