CALS Roll Call Continued

[Golfergirl]

I too considered moving however my PALS is so debilitated that moving seemed like a nightmare. We have converted our diningroom to a hospital room. Since he is bedridden the bathroom is no longer an issue as we use a bedpan. I am looking for a reputable contractor to widen our doorways so his motorized w/c will fit.

 

[scaredwifetx]

Welcome to the ALS haters club Golfergirl. I am so sorry you have to join us and your husbands decline is so rapid.

 

[Michellesews]

Hello All...well here it is Friday and I'm 2 days late...I'm always late these days! Took PALS to the Pulmo doc yesterday. I declined a PFT because I thought it would kill him. I don't need to know numbers, I know he's dying. His O2 sat on the trilogy was 88. They took it twice, same result.
We took delivery of a mobility van courtesy of the VA. He can't seem to hit the latch in the floor with his PWC so I just tie it down, but it's nice that he is no longer housebound.
The VA also purchased him his own Trilogy so that when he does want Hospice, he will be accepted. Previously Medicare was renting it and they would no longer pay the rent if he was on hospice and hospice will not either. So the VA stepped in once again.

In my prayers each night I ask the Lord to not let him suffer and I thank Him for our VA. They have gone far and above for us and I hate to think where we would be without them.

But even so, the decline I see in my PALS is absolutely frightening. Last week he could use only his right hand, now he can't. He looks like he shrinks a little each day. How can one begin to describe the heartbreak this disease causes? It's almost unbearable at times.
I'll try to hit Wednesday next week. Hugs to all....we really ARE in this together!

 

[soonerwife]

So sorry to hear of your husbands dx. It is so sad to find out our loved ones have this terrible disease.

I hope you can find some comfort here with us.

We understand what you are going through. There are so many kind people here with so much knowledge. Feel free to ask questions, vent or whatever you need.

I hate ALS too! It sucks!

 

[gooseberry]

Ahhh Michelle, the watching is the worst part. Caregiving and doing what your pals needs is hard but rewarding. The watching and recognizing the changes, that is what got to me.

 

[scaredwifetx]

Michelle, I totally understand the pain of watching their decline. It has been very tough on me lately. It does help being a part of this forum. You can visit whenever you have time or feel the need. We are all here for you and truly understand. Big hugs Michelle.

Soonerwife, I met a husband and wife from Cleveland at a work conference a couple of weeks ago. They told me about someone else there who had ALS and passed. The couple knew everyone I named and the wife was the same age as me. Crazy small world. Just to think you can drive through town in about 15 minutes.

 

[Golfergirl]

I am getting better at using the hoyer lift, my husband said tonight was the best "landing" yet. His voice is very weak but he still has his sense of humor. Our 2 year olf grandson visited today with our daughter and he said "Pap has a boo boo". Family does keep us going especially on days I would like to run away!!

 

[soonerwife]

scaredwifetx, it is such a small world. I can not wait until you come back to Tulsa. Any idea when that will be?

 

[scaredwifetx]

Sooner wife, I will be in Tulsa the first week of August for work. I received some weird news at the doctors office on Thursday and now have to see a cardiologist so hopefully not to major so I can keep my schedule. I would love to meet you.

 

[soonerwife]

scaredwifetx, Yay! Just let me know and I will meet you. Good luck at the dr on Tuesday. Keep us updated please. We will be thinking of you and praying for you.

 

[Nuts]

Late again--my usual now! Hubby is weaning off nerve pain and anxiety meds, YEAH. Some days he seems much clearer. I've been hoping that the drugs were affecting his cognition, and it looks like that might be at least partly true.

I'm a mess, however, Neuropathy is acting up in hands and feet, neck hurts in the morning and hands and wrists hurt, fingers are "going to sleep". Grrrr. I tried sleeping in wrist splints last night (carpal tunnel) and woke in so much pain I had to take them off, but my fingers couldn't pull the Velcro tabs. I had to use my teeth. I guess it's time to go back... Who has time? Or energy? Grrrr.

Otherwise, life is good. My father-in-law is visiting, and he's a lovely man. Today he and two brothers-in-law are golfing. Hubby is left out for the first time, but he's too tired anyway. I did offer to take him out during the day so he could chase them around the golf course, but I think he'll take the opportunity to rest up. They are all coming over for dinner after golf.

I follow all of your posts and am sorry I don't have the time or energy to respond to everyone right now. What a lovely and supportive group of CALS. I love you all.

Becky

 

[texastc]

Few days late for wednesday, but just a few words for you guys in the trenches...except I can't hardly find any words. Reading of your battles breaks my heart all over again.

I/we crossed the 9 months marker since Tracy left last week. The days and hours sometimes pass really slow, but the weeks and months seem to fly by. When I think about it, it was like while I was in the trench too, just not so easily recognizeable. It's still really hard, just a different kind of hard.

Survived our sons wedding a couple of weeks ago. That was hard...going to places where we should have both been is difficult. She would have given anything to be there...but in the condition it had evolved to would have stunk. I keep telling that to myself every time the feeling comes over me.

Only thing I can come up with this morning is this....hug and hold your PAL, love them in person every chance you get.

tc

 

[scaredwifetx]

Thanks for checking in TC and the wonderful words of support. I was wondering about how you were doing the other day.
Becky, I am so sorry that you have so much to deal with.

 

[affected]

Another week has rolled by, love you all xx

 

[soonerwife]

It's Wednesday again. Everything is pretty much the same here. I am hoping that the antidepressants are working. I seem to feel a bit better. PALS is the same. I guess that's a good thing.. That's the way I should look at that! Hope everyone is doing well!