CALS Roll Call Continued

[Tomswife]

I really appreciate this CALS thread and all of you.

- tom is not constipated. The frequency of bm need was the diarrhea from relyvrio. And gas making him think it was bm. We stopped Relyvrio.
- i think the physical strength issues are that i am 70, lower back issues, torn rotator cuff, 185 lb PALS with no core strength or leg strength. Sometimes he slides even though i have legs up in bed. Our new aide said it will happen. People slide. I am trying to minimize the sliding. And i think i have accomplished that.
- I am getting good at sling and lift. I had no person help with experience. Learned via youtube. I had aid put me in sling first b4 tom.
- we have a terrific PT aide mon, weds, fri. Agency is Working on staffing for other days.

My tired rant was after a night of commode visits.

You are all amazing. Hugs.

 

[MJT]

Kathy, when my PALS was diagnosed, I immediately scheduled rotator cuff surgery to eliminate problems later moving him. I dreaded it, having seen my PALS' shoulder surgery recovery, but when you are ready, it is easy.
Laurie, I always appreciate your suggestions. Of course, everyone needs to do what is suitable for their PALS.
Mary, your MLK Day memory was touching an helps us to know your husband.
I don't know how I could be a CALS without you all.

 

[MJT]

Kathy, I meant that as encouragement, not to school you!!

 

[Mary2]

Good news here! We just got back from the cardiologist and he says my PALS breathing is causing artifact in the EKG read out and there is no afib. Both today's EKG and the one on January 5...no afib. Some other ventricle contractions that are causing his heartbeat to look irregular, but he said these were ok. He cleared PALS for Neudexta and no f/u except as needed.

 

[affected]

That's great news Mary! Turns out it was really worth that cardio consult.

 

[Mary2]

MJT: Are we approaching the surprise wedding? I will need to go back through the notes and see if it is this week end!

 

[Mary2]

MJT: Yes, the surprise wedding is tomorrow! I am thinking of you and your PALS and your family!

 

[affected]

OMG tomorrow? that is exciting - enjoy every moment MJT!

5000 gold star points to Mary for being on the ball.

 

[MJT]

How thoughtful, Mary. It was perfect, and all were surprised, as evidenced by the guy in the hat! (We all laughed and he was not to blame as there was no dress code on the fake Evite to the party.) To relate it to ALS/CALS, it was a reminder that giving up the notion of control helps me find peace. We handed complete control of the event to our excellent planner, who created magic.

 

[Mary2]

Lovely picture! So glad the wedding went well! It was a great idea! Congrats! Your PALs looks great in his suit!
And the Bride is lovely!

 

[affected]

WOW that photo is incredible, so beautiful. Huge kudos for you to hand over the control and let it happen.

 

[Mary2]

Well I am expecting my son any minute who is going to work from here and take his dog home. The palliative care NP is coming at 11:30 and a repair person is coming somewhere between 1 and 3. We are zooming with family at 4:30 and a caregiver is coming at 6. I have to get PALS up and do meds and breakfast and then lunch. But I am so tired and bored I could sit here for the next 8 hours and play a computer game on my phone. I wish I could cry, but I am too tired to cry.

 

[MJT]

Mary, I'm sorry you are exhausted. It's very, very hard.

 

[affected]

Hugs Mary, I hope you got through the day ok

 

[Mana]

Sending you love