My procedures for the day.

Status
Not open for further replies.

joelc

Moderator emeritus
Joined
Jul 15, 2006
Messages
2,835
Reason
PALS
Diagnosis
09/2005
Country
CA
State
BC
City
Abbotsford
I know that there are not many PALS that are as advanced as I am but thought I would post what happens in my day anyway. Someone might find it interesting or helpful. I did it to give to my caregivers.

Procedures

Is it at all helpful to anyone?
:smile::smile::smile:
 
Very thorough, how did they do?
 
I had to make those because one is excellent and the other can't remember from one day to the next. But all things considered they are doing okay. It has been a very interesting experience!
 
Joel, when you disconnect from the bedroom ventilator until you connect to the wheelchair one, you are not able to breathe, right? How long does that last? Is it uncomfortable?

Thanks for posting the list, interesting.
 
Hal, I have no independent breathing time at all. It takes less than 1 minute to transfer and get my other vent on. It is not uncomfortable at all. I can easily go up to 3 minutes. Because I have no movement I don't consume any energy.
 
Joel, thanks for sharing. How long does it take for the morning routine to be completed (from getting up/feeding to office)?

I liked this: 5. Scratch my back.

Brilliant. Dani
 
Thanks Dani, it takes anywhere from 30 to 45 minutes.
 
Wow, Joel! Brilliant! Thank you for sharing.
Peace,
Melody
 
Hope that you are doing good with your caregivers. How long until you get the beautiful Christine back ?
 
Thanks for sharing, Joel. :)

Esp. with that suction procedures. Btw, what type of gloves do your caregivers used?
 
Joel that was great info. but I was worn out by the time you got through your routine. Oh God I hate this disease. i only hope I can cope when i get to that point.
 
The caregivers use Vinyl gloves, medium size. We get them from a local medical supply store.

Rox, don't think about it. Concentrate on enjoying today, don't worry about tomorrow. I woke up one morning and found myself in this condition, it is really not as bad as you think. It also does not happen overnight so you adjust as it progresses.

I have to say that the hardest part is finding and training competent caregivers. That is why I had to create those procedures and I am constantly having to tell them to reread them as they can't remember what to do and since I can no longer talk it has been a challenge. But, things are getting better - finally!
 
Bless you Joel. If ever God had a special gift in mind for you, your living it so you can be a blessings and a help to others going through this. Your web site is a ton of work to put together, but an incredible tool for us all. Thank you for all your time and effort you continue to put forth each day.
 
Joel, You are a wealth of information. What a routine. I admire your strength, don't think i could go through all that.
 
Status
Not open for further replies.
Back
Top