Help! Strength: Conserve or Use It or Lose It?

[affected]

Marielaure I think there is a huge difference in a PALS wanting to do things and paid staff like a nurse telling them to do things that are not appropriate.

I was vigilant as anything with the staff who helped me with Chris. I ensured they were taught how and why, and they did not make presumptions.

But if Chris wanted something any particular way, even if I knew it was not the best way, then we all did what he wanted.

Does that make sense?
For example if I found a nurse saying, go on try harder I would take them aside and explain ALS and how to approach the situation.
If Chris said, no I want to try and walk all the way to the toilet, I would say OK even if I knew it was more than I would think he should be doing. When he then had no energy to do anything else, well so be it.

 

[lgelb]

Marie Laure, when we say that PALS find their own way, that does not include a nurse telling them what to do, either. You have the right to speak up to the nurse with the information we have shared, that the ability of the nerves to send signals controlling the muscles is like a battery in terms of "running out" in ALS, and so PALS should not be taxed to their max.

Best,
Laurie

 

[MarieLaure]

Don’t worry I kept quiet because he doesn’t like to argue but he does it his way and I told her it would be good if she could have another talk with the doctor about him and his illness. The doctor talked with her and now although she disapproves she doesn’t push anymore
Thanks all

 

[Atsugi]

Very good discussion. 5 stars. Thanks for bringing it up ThisPresentMoment.


During hospice at our house, not a single nurse knew a thing about paralyzed patients, but some pretended to, at first. One of the nurses told me she had been in administration her whole career.

I had to train every one of them and supervise them tightly. Their presence allowed me to get some sleep.

I'll never forget: One night, my PALS seemed to be in a panic and spelled out "NOJAR" which meant "no air" was coming out of the tubes. Just then, the phone rang, and the nurse left the room to go answer the phone!


A lesson I learned often: never leave the PALS alone in the care of professionals.

 

[chally]

Conserve, but do some rom if possible

I posted a video on rom might still be able to view it

Good luck

 

[wishmobbing]

Making you own decisions is good and it's even better if those are informed decisions. So it's great that PALS have this platform to inform themselves and CALS are asking around, figure out how the mechanics of the beast are and relate it to their PALS who's likely trusting them. My boyfriend never researched a lot but he listened to me. And then decided himself if this was good advice.

 

[blitzc]

The first pool was at a friend's house that we stayed with on vacation. The other pool was at a condo in Hilton Head while on another vacation this summer. It had steps, but they were too high of steps for me.

I will check out the YMCA that has a pool near me and check about the lift.

Cathy

 

[Vincent]

I'm a big fan of conservation. Why use all your limited energy on the mundane or unnecessary when you can save it for later. For something fun. Your father, if he uses the wheelchair during the day, may find he has the energy to stand later in the day. This is not a disease you rehab from. The best you can hope for is to manage the inexorable decline. And conserving energy goes a long way to achieving that.

I attended the funeral of a friend with ALS a few weeks back. Being well known in the community it was very well attended. The receiving line to see his wife was 2 hours long. I stood in line for a hour, then got my wheelchair. I went to the funeral the next day and again stood for an hour.

The following day, my calves went into spasm that didn't subside for most of 2 weeks. I didn't walk, no running all I was doing was standing and I was unable to do much of anything for 2 weeks. Conserve energy, you have a finite amount, don't waste it!

Vincent

 

[ThisPresentMoment]

I can't thank all of you enough for your replies. I'll be reading them all to Mom and Dad. (I gave them the cliff notes already.). When the PT gave them this advice I kept asking, "For ALS? For ALS?" based on what I'd read here. I wish that we had come to the decision to always conserve sooner. Really, we don't have a choice any longer. Dad has gone the last day or two without using the lift again by conserving his strength only for necessary transfers, (bathroom, bed, wheelchair.)

It's also given us all a heads up that the time when we will need more help is fast approaching. We're working on that. ALS hopefully will be delivering a hospital bed today.

He is doing ROM. Chally, where would I find your video? We will look into massage. I think that would be great for him.

We're only nine months into this journey. Already I have no idea how we could have coped without the help of this forum. We are so very thankful.

 

[affected]

Chally has done a couple of videos.
I used the search box at the top to find them for you.
https://www.alsforums.com/forum/general-discussion-about-als-mnd/40737-j-ne-f-nda-workout-video.html

https://www.alsforums.com/forum/stories-hope/42317-workout-fun.html

Also these are videos that I did with my Chris.
https://www.alsforums.com/forum/current-caregivers-cals/26580-massage-rom.html

 

[Atsugi]

J*ne F*nda, indeed.


Made me smile.

 

[chally]

Thx tillie