Old 03-27-2018, 12:33 AM #1456 (permalink)
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Default Re: CALS Roll Call Continued

Wish - it is so scary to see our PALS choke. My heart races even thinking about it. I’ve learned what triggers my PALS laryngospams (which some people think looks like choking) and my PALS has learned a few ways to cope/relax/get rid of them quicker.

Bit of a rough 4-5 days here. Some stomach tenderness and working through some minor impaction i believe. He fainted while trying to go, scared me lots. I still feel his colour doesn’t apprear normal. White/greenish. Recovery mode with PeG, lots of water, trying to go, etc. I see how hard it is on him physically and mentally. It sucks.
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Old 03-27-2018, 12:47 AM #1457 (permalink)
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Default Re: CALS Roll Call Continued

Also I feel like an emotional rollercoaster where I think I am strong one day and the next I feel like mush. I feel like I’m screaming inside sometimes and other times I feel just defeated. I hate this godforsaken disease so much.
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Old 03-27-2018, 02:48 AM #1458 (permalink)
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Default Re: CALS Roll Call Continued

Buckhorn, good to hear that more time on the trilogy would likely help with swallowing. I was pretty sure that the beautiful spring walk over the fields we had earlier exhausted him. He wasn't on the Bipap at all that day and steering the pwc while trying to maintain core strength is becoming hard on him.

Ninja, boah, rough spell indeed. I could highly recommend a stool softener as a daily preemptive measure. Bearing down needs muscles so it's not just a digestive thing. Hydration is key and you're in it. You go, girl!

Just presented my weepy voice to the agency holding up his approval for a head mouse and everything to replace his vanishing hand. They just have to slap a stamp on for health insurance to grant it and it's been sitting there for two weeks now. They are not allowed to give out information but I rather wanted to give them some info. About how I'm gonna drop my boyfriend off at their office so they can type his texts. If they can understand him. Let's so how that goes...

Sending some charming spring sun and flowers to all of you!
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Old 04-07-2018, 07:27 AM #1459 (permalink)
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Default Re: CALS Roll Call Continued

Hey you beautiful spring chickens!
It's been quite here so I assume most CALS are busy. Rough patches, Easter madness, rather being outside in your free time than in front of a PC.
Just wanne give a shout-out to you all. On my end it's been some nice days with family, grief because my CALS can no longer eat anything more than 3-4 spoons of pureed food and (not at all too late) relief about the new nursing service who started last week. Takes some adapting, more for my boyfriend, but I'm pretty confident with the guy they sent for the first two weeks of 5 nightshifts (12 hours each night!) a week.
Because of many here dealing with incredible cost and obstacles in getting good care for their PALS I feel lucky and grateful about the weird German healthcare system and about to opportunity the get out more with less worry and carry home excitement, joy and stories. My PALS knows this is important for both of us and is trying to be brave about it. It's hard for him, strange people that won't guess the endings to his sentences right. We'll give it some time.
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Old 04-07-2018, 07:40 AM #1460 (permalink)
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Default Re: CALS Roll Call Continued

Wish - I’m happy you can get some help. It’s huge with this disease.

I managed to get out to a knit and craft festival yesterday while DS was here. Felt good to have some down time.

Brian’s drooling had increase again, trying to find ways to keep him dry. And ongoing battle that can’t be won, in a list of battles that can’t be won.

Bigger update on my thread.

Hugs to all,

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Old 04-07-2018, 10:43 AM #1461 (permalink)
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Default Re: CALS Roll Call Continued

The Trilogy as a way to preserve strength for swallowing (as well as breathing!) and a midline mount for the joystick instead of out to the side to make driving easier are kind of the same thing. When less energy is used for something, a PALS may be able to hold on to that ability, be it swallowing or driving, for longer.

So wish, if your bf's core is weak, you might want to look into a midline (Google, for example, Tri-Lock midline) to better harness the core strength he still has. After all, we drive with the steering wheel in the middle, not out to the side.
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Old 04-07-2018, 04:03 PM #1462 (permalink)
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Default Re: CALS Roll Call Continued

You are so right about preserving energy, Laurie. I even coaxed him into trying to wear his breathing mask while sleeping and it worked for a couple hours. I won't force him, but suggest it. And I suggest it in any break between appointments. Even 10-20 minutes here and there would add up. Baby steps...
Thank you for the midline idea, something I haven't heard of yet. Gonna call the wheelchair guy anyways on Monday, I need to kick his... donkey regarding some repairs and we need to figure out a game plan FAST for when the hand fails him. We are waiting for almost four month (very aggravating) now to get a head mouse and all kinds of gadgets, some of which he probably no longer needs.

Midline, have to jot that down real quick... :- )
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Old 04-07-2018, 10:53 PM #1463 (permalink)
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Default Re: CALS Roll Call Continued

Something else to keep in mind, wish, is that mini joysticks are available, more like a button than a handle, that take less force to operate. Also, there is a cut-to-size flex shaft handle that might be the last step for leveraging a single finger joint that can move, before going to chin control or eye gaze, or head switch. If his hands are fading fast, the midline mount could also hold a chin control instead of a hand-operated joystick.So you can keep the same mount while changing the type and position of driving mechanisms.
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Old 04-20-2018, 10:09 AM #1464 (permalink)
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Default Re: CALS Roll Call Continued

We applied for the chin control which will last him longer than the mid line.
Also on Monday a headmouse, ipad and lots of gear to control TV, phone and lights will be installed. It's gonna be geek heaven.
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Old 04-20-2018, 10:37 AM #1465 (permalink)
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Default Re: CALS Roll Call Continued

Wishmobbing - all that tech will be wonderful! Please let us know how it goes. I'm looking into these items too, just wondering if they will be easy to use, etc.

Hope all you CALS are doing okay and hanging in. I've had a bit of a rough week emotionally/mentally, but hopefully things will turn around soon. Maybe a little bit of some fresh air this weekend will help. I know exercise helps with mood, but I just dont have the time/energy/desire...working on it, lol. I'm a bit intimidated for what rougher weeks down the road are to come. Maybe I will look back at this time and think that I didn't know how easy I had it. I'm not sure.
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Old 04-20-2018, 12:30 PM #1466 (permalink)
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Default Re: CALS Roll Call Continued

Just as a clarification, the midline holds the chin controls, mobile devices and other aids. It's not a joystick or means of moving the wheelchair by itself. It's a way to bring them closer to use remaining muscles better.

Glad to hear tech is headed your way!
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Old 04-20-2018, 05:10 PM #1467 (permalink)
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Default Re: CALS Roll Call Continued

Wish you certainly will be geeking out at your place.

Ninja - hugs to you. It’s normal to go through times like that. I would say caregiving is very much and up and down roller coaster ride.

Things here are pretty much status quo with Brian.

Hugs,

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Old 04-20-2018, 07:46 PM #1468 (permalink)
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Default Re: CALS Roll Call Continued

Ninja, I've been thinking about you a lot today after you wrote about the support group thing. It really is so much responsibility in you. Going to meetings on top of that might be too much just getting it into your schedule, without even considering how it makes you feel. Try not to think ahead too much. Objectively harder times will come but that doesn't mean you'll feel worse. I had a really dark spell in fall. I was so devastated that I was already breaking down because I knew that my PALS would never get better. But other stuff got better. I found this forum, I accepted any help that was thrown our way and over the winter I learned that working full time was too much. I stopped working three month ago (which is a privilege sponsored by family and social security) and have been feeling really good since then. It's still a rollercoaster and sad and exhausting. I cry every couple days, stuff gets to me quicker, but I can shake it off quickly and laugh from the bottom of my heart again.
You got so much on your plate and I truly hope you get lots of help left and right.

Laurie, I understood it to be a mount for a joystick. The chin control will be strapped to him directly and move with his body. Sounds pretty fail prove and I hope it's comfortable.
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Old 04-20-2018, 10:42 PM #1469 (permalink)
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Default Re: CALS Roll Call Continued

Thanks Wish. You are probably right about the time/schedule...I find I really have to budget what is important enough to take time getting ready/drivings/being there, etc. When someone asks me for coffee or lunch I have to really think about it being worth it or not in the big picture of catching up on work after, kid duties, PALS duties, housekeeping, cooking, etc. It has made me more socially isolated which isn't a good thing but I just don't feel that some things are worth the effort of getting out of this house even though I feel like I'm here all the time.

Thanks for the hugs Sue, I need them! I have always been so even keel, steady mood and since my PALS Dx I really do feel like I'm on an emotional roller coaster. I'm not used to it at all. Glad I'm not the only one! Sometimes I wonder if I'm losing it, but by wondering if I am that means I'm not, right?! lol (the insane don't question their sanity?!)

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Old 04-21-2018, 10:33 AM #1470 (permalink)
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Default Re: CALS Roll Call Continued

Ninja,

First of all, sending big hugs.

You have a lot on your plate. I too find I have to budget my time on what makes sense to ME. It may not make sense to anyone else, but at this point, it's what I do.

The roller-coaster of emotions in dealing with this disease is something I have never experienced before. Sometimes it seems like I'm in a free-fall for days. Then it will even out for a bit. Maybe even a few up-swings. Hang in there. This forum has helped me keep my sanity in an insane situation.
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