CALS Roll Call Continued

vltsra

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CALS
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ARCG so happy you had a good day and help from unexpected sources. Ditto Tillie, I was terribly disappointed in some friends I thought would be here for us. They have disappeared. The loveliest thing is that others have really stepped in to be here for us. Yesterday my husband had two visitors - his lifelong friend, and a man we met at church who has been concerned that my PALS hasn't been going. Then his sister came over and actually helped me with dinner. A good day.
 

Narrowminded

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Apr 30, 2016
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So happy to hear some CALS/PALS are getting some unexpected help. That seemed to be where our random acts of kindness came from as well.

Funny because I’ve now had cousins say call me, it has to be so hard for you. Ah yeah, but where the heck were you when I was in the trenches? Something I’ll never understand.
 

ARCG

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Messages
105
Reason
CALS
Diagnosis
1/2015
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We had the wedding and it was a joyful and fun weekend for all. Lots of planning, juggling, as you might expect, but well worth the effort to see all the family and friends gathered to celebrate...and boy, did they!

While all the work that went into the planning was overwhelming at times, I am now so glad I pulled it off, such great memories for everyone. And so many friends and relatives from out of town coming and getting to visit with my pals.

I hope I can hold on to these happy memories going forward.
 

pittsburghgal

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Messages
495
Reason
CALS
Diagnosis
11/2011
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ARCG, I'm so happy that the wedding gave you such joy. You will definitely hold on to those wonderful memories. They are what gets us through this.

Sharon
 

Narrowminded

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Awesome news ARCG. So happy all went well and much enjoyment was had.

Hugs
 

ARCG

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Messages
105
Reason
CALS
Diagnosis
1/2015
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My pals has, for all intents and purposes, lost his ability to talk. I know he is frustrated, even though he is able to text and speak with the alternative systems I had in place in anticipation of this. He still has the ability to use them, but it is another loss. He was depressed tonight, I could tell, but refuses any suggestion of antidepressants. He has been in denial so long, it may be catching up with him. I speak for him now when the hospice nurse comes. she turns to ask him if it’s okay if I speak for him, he nods yes, and then shakes his head at pretty much anything I say. I am afraid it is FTD. I think I may have to call her and explain what that is, as it seems the hospice nurses don’t have a lot of experience with ALS. He is having more trouble swallowing but denies it. He is weaker, it denies it. I am older and weaker myself, but when I have more difficulty transferring him, he insists it is the way I am doing it, not the fact that he weighs a lot more than I do and I am not a young woman, I have learned to lift with my legs and, fortunately, have been physically active, try to eat right, so am still in ok shape. We do have a lift, it he hates when I have to use it and is usually mad at me for 24 hours afterwards. I love him, this is not him, it is so heartbreaking.
 

affected

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ARCG - it's so isolating when you know all this stuff is going on and you can't really explain it. Please do speak to your hospice - maybe give them the link to my site section on FTD as that may help them.
Would you consider a strategy of telling him that you just can't get the hang of transferring him right and you are scared you will drop him, and that it is your failing? You and I know this is not correct, but do you think you could convince him to accept the lift if he feels like he always knew you were doing it wrong? Anyone else reading this please let me say, that when dealing with FTD it is not like dealing with someone who is depressed, or stubborn or in denial. If they get stuck on any one line of thinking, you will never change their mind, especially by presenting logic, or by appealing to empathy.
 

Narrowminded

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ARCG I’m sending huge hugs. This transition was one of the very worst for my DH. Losing that ability about drove him crazy until we could get his eyegaze. He didn’t sleep and so neither did I. It was rough. Hang in there, we’ve got your back.
 

ARCG

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Joined
Oct 12, 2016
Messages
105
Reason
CALS
Diagnosis
1/2015
Country
US
State
Texas
Ironically, I have temporarily lost my ability to talk as well. Was sick a couple weeks ago, got better and this week developed laryngitis, so much, it hurts to talk. Doctor said it is a common virus that is going around here and there is little I can do but rest, drink fluids and wait it out. The resting thing, not easy, but my youngest doesn’t leave for college for a couple days so has been a big help. Haven’t slept In three nights from the pain. FortunTeky my husband hasn’t caught it, knock wood. One thing about his ALS is that he seems to be able to ward off the common cold and viruses.
My illness has me depressed on top of the pain, hard to put one foot in front of the other. One step forward, two steps back, all the time. Can’t get a break.
 

vltsra

Distinguished member
Joined
Nov 12, 2015
Messages
338
Reason
CALS
Diagnosis
11/2015
Country
US
State
CA
Dear ARCG, sending you hugs and chicken soup. Hope you feel better soon. I understand the depression.

V
 

affected

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so sorry ARCG, I can only send hugs of sympathy and wishes for a speedy recovery - it sucks!
 

affected

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Deb 3.5 years as a CALS - the exhaustion must be bone deep 💜
 
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