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affected

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Don't do it on the floor tho. You need to be on a bed.

I liked the way in that video they put it under the draw sheet and thought about you and your situation immediately. And yes I wasn't thinking Brian could use his legs to help move up the bed, but was thinking about the drag of his legs.

Another important thing mentioned is that the slide sheet must go from covering under his bum well, right up to under his head to prevent and body drag.

Has anyone else tried out the posey as compared to hand splints?
 

Lkaibel

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Paul, I am sorry for all you have gone through! On a legal note, I am pretty sure in the states a POA rules all. You would have been within your rights here to call an attorney ASAP had you gotten any flack who would have made short work of resolving the issue, at least in my state.

Glad you are getting things worked out.
 

pdcraig

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As much as I'm sorry for the struggles everyone has had, I'm also relieved it isn't just me. That constant CALS second guessing, I must be doing something wrong.

Soonerwife and scared, I will say, between clinic and my ALS rep we had equipment long before we knew we needed it. They were fantastic. We were lucky that the ALS loaner clinic was pretty well stocked in my area. We waited for a couple of things but for the most part they were amazing.

Funding, whole other story. Everyone thought someone else paid for things. So incredibly frustrating doing the rounds of agencies. Insurance, insert profanity of your choice.

Sue, the posey as a restraint made me smile. I'm guessing it's because Posey is a manufacturer not the actual item. I applaud your craftiness trying to find a solution for the slide sheets. Not my forte. I would be interested in hearing how things turn out with the bladder. My PALS is also having difficulty urinating. It can take as long as 30 minutes to get started. No lump like your PALS and no one has been able to figure out what the problem is. Standard line from clinic has always been bladder and bowel control are not affected by ALS, see your GP.

Loverly, I'd never heard of a gait belt. That would definitely have been useful when my PALS was still at home with me. Never thought of using satin sheets either, that's clever. I'm having a tough time getting my PALS to practice with his text to talk machine, always later. I was told BiPAP is considered life extending, if my PALS goes into palliative care they will wean him off of it. No if ands or buts. I'm glad no one told me about no one visiting. I don't think I could have handled that on top of everything else at the time. You really do end up isolated as a CALS sometimes. Everyone just assumes you've got it covered, don't want to intrude, want to respect your privacy, can't handle seeing them this way. The list goes on. Funny thing is, if I arrange things, our friends have been really enthusiastic about showing up and are great with him. Even his family doesn't like to visit if I'm not there. Not sure what that is about.

Manhattanite, If you can't afford, don't know how to research or don't have someone advocating for you, you don't get. I see it every time I'm in the LTC facility. It really is heartbreaking sometimes. My PALS roommate moved rooms and all of his worldly goods would have fit in my knapsack. I couldn't believe it. One of the reasons he moved was it was disturbing to him that I was there so much and no one was there for him. It made him angry.

Tillie, I honestly can't believe there was something you hadn't seen. You know everything and have been so helpful to so many of us. I wonder if there is a way to make the forum easier for new CALS? Maybe edit the tags to our posts? I searched over and over for hospice in Canada to no avail because it's not called hospice here. Imagine my surprise when I met the Durham hospice rep and what they offered was nothing like what I was reading about.

Diane, we use those pads to reposition my PALS. I have the same problem as Sue, they don't slide very well and they wrinkle. The ones at the LTC aren't very nice to the touch either. My PALS will only tolerate the blue ones because they are softer. When I pointed that out to the PSW's they didn't even realize there was a difference in texture.

Lenore, the POA does trump all here as well and my lawyer did say they were being ridiculous. It becomes a battle of attrition. Do you have the time and money to fight these fights? Both are in short supply these days. Ultimately I ended up with access to everything as him, which the bank said was not the way to do it. I think if they didn't catch I had been signing his cheques for over a year, I'm not going to worry too much about their policies. Hopefully I won't have this much of a fight as his executor.

I think we all could lay claim to my crown

Paul

Prince of Persistence

=o0:neutral:0o=
 

Narrowminded

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Paul - still working on the bladder issue, as well as the slide sheet issue. As to the bladder, he has no control. He still does go, but he's not emptying but when asked he doesn't have the sensation like there is still something there. So far I have not seen improvement from the Flomax. However, he and I were talking yesterday and not sure how much a Urology consult would do. He says he won't take chemo (don't think he could survive it anyway) if it happens to be prostate cancer, and surgery is out of the question, as he wouldn't survive that either. However, leaving it in there is a huge infection risk and also not good.

Really, I think that ALS does eventually attack those areas that were first thought not to be bothered. I'm guessing that it all depends on how long your PALS lives with ALS. Many chose not to vent and probaby lose their battle before losing things like bladder and bowel. Then even some who vent, don't make it for very long. I think as those who chose to vent live longer they will find other areas that are connected, just unknown before.

Hugs,

Sue
 

Colawoman

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Paul, were y'all on a cruise through the Panama Canal and around South America in December 2014?
 
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