Changes in strength. Assessing. Adjusting care.

[Tomswife]

Tom PALS seems to be progressing rapidly. No doctor has said this. But week to week he has changes in body ability and strength.
I was supposed to take him out this am to see pulmonologist. Up at 6am for 8am wheelchair transport. I have been using the sling and hoyer for several weeks, many times per day. I needed to get a diaper on him and zip away pants. Could not do it. He cannot lay below 60 degrees. He has no core strength. Leg or arm strength.
Two weeks ago, I may have been able to do this. Now no. Cancelled wheelchair transport and appt. Next time i will have an aide here.

I should have practiced yesterday when the aide was here. We did discuss what needed to be done but i did not dova practice run. If i had i would have known i could not succeed. Lesson learned.

I do keep a journal of changes. But when he goes-- from hospital bed to commode to recliner --i dont get a clear sense of what is failing.

 

[wishmobbing]

This nasty disease really tends to blindside all involved. Don't feel bad about it. If you had tested everything the day before, that extra effort could have lowered your or your PALS' energy for today. Roll with the punches and full success next time!

 

[Mary2]

Sorry this happened Tom's wife. You will get it done! CALS always get it done!

 

[lgelb]

Hi Kathy, sorry the trip didn't work out. Many of us just did a pad underneath if necessary and blankets over the lower half in a commando setup. The only pants we could do for going out were the side snaps on the top part kind, very stretchy, that we put on in bed with the head elevated and then bending the legs up one by one.

 

[Tomswife]

I actually did consider wrapping Tom in a throw! But he said no. Tomorrow we are supposed to head to the local neurologist at 9am. The aide is coming at 830. So it will be hectic. If we cant get his pants on he can go to neurologist in a throw, small office building. Today would have been medical center, lots of people, children. Etc.

 

[Tomswife]

I have pants that zip all the way down legs. But i am not strong enough to move his body. Aide can help.

 

[affected]

If you have him in the chair and set up with a throw, it won't matter how many people, nor their ages, as they wont really realise.
Hope it works out tomorrow for you!

 

[MupstateNY]

I have a new policy -- no appointments before 11 am.

Also I told my center today that for my april visit I am not willing to be there more than 2 hours (last time it was 6). I want to do as much as possible via telemed in advance.

 

[affected]

on the other hand, my Chris would become so tired by middle of the day we preferred early appointments while he had some energy. different for everyone really.

 

[Tomswife]

Well we made it to the local neurologist who had diagnosed PALS correctly last july (and sent us to Big H clinic). He examined Tom and asked him and me lots of questions. (No exam at clinic in November. Just light chat.) We will do telehealth in future and have next appointment in TEN DAYS (not clinic 3 months!)
Pulmonologist called me yesterday. What happened. Why did we cancel? How amazing they are checking on us!!! Pulmonologist is now jan 30.
Had to use manual wheelchair. That was tough on PALS. Will succeed with PWC. But I dont have much time. I am helping the helpers. They do not have hoyer sling experience.

 

[Mary2]

Glad to hear neurology appointment went well! And that pulmonologist is interested in PALS!

My day careworker had hoyer lyft experience from working in a nursing home. He has been with us 14 months. He recently picked up another case closer to his home. Right now he is doing both cases. I am fearful he will move on and then we will have to find another caregiver.

We had one caregiver who was not comfortable with the hoyer lyft at all. I really couldn't leave the house. And around here to find a caregiver that is both vaccinated and is comfortable with a hoyer lyft is really asking a lot!

 

[affected]

Two steps forward Tomswife! You got to the neuro and you know the pulmo at least follows up.