24 Hour Progression

[alswife77]

At the beginning of the weekend my husband was using his walker to get to the bathroom and bedroom and back . Granted not a great distance and slow going but he was managing it. Last night his legs just seemed to give out and he could barely make it from the bed to our bathroom which is just a couple of feet.

Can this happen so fast? Obviously we knew it was coming but this was like flipping a switch. Is this possible that it could happen in what seems like an instant. I like to think I am ahead of the game but I seem to be taken by surprise at this new development.

He is in so much pain even with the meds. My heart breaks for him. I just called hospice and they are sending a nurse out asap. I don't know what I would do without them. I have to go to work but there will be someone here with him. Wish I could stay home.

 

[Ells]

Sorry to read of your distress. It’s not a great leap from shuffling with a walker to losing a bit more strength making walking too difficult, tbh.

Could there be something else going on that could explain his deterioration? an infection, new meds/dose, stress, extra tired?

 

[andycap]

I totally understand ....I have to leave my husband to go to work also,have you looked in to becoming a paid caregiver for him .....his social worker said they would not let me be it because I have MS,he doesn't want anyone but me there although he is progressing fast and soon may not have a choice.

 

[Atsugi]

Hi, AW.

Isn't your husband an amputee? When you wrote that his legs gave out, I was concerned because I wouldn't expect both legs to give out at once due to ALS--I would wonder if there was an emergency of some other nature.

But if it's really just one leg that gave out over the weekend, that is totally possible in ALS.

 

[affected]

totally possible.

It isn't like you are saying he was walking perfectly normally and now overnight he cannot.

Bit by bit the muscles in his legs were being affected, his walking was becoming weaker, then yep overnight the scales were tipped and he cannot do it.

Horrid disease

 

[lgelb]

Yes, it's very possible. I'm sorry for the progression. If he is on pain meds already, those probably aren't helping, and if they're not working very well, you might discuss different combos/doses with hospice.

 

[gooseberry]

My pals can still stand and take a few steps, yet sometimes he cant. He is on the verge of not walking. His doctors say why are you using all that energy.....use your pwc. He doesn't want it to be his only option. He is scared.

Alswife, progression is funny. Sometime it sneaks up on you and other times it clobbers you. The only thing you Can count on with als is it is everchanging.

 

[JohnDC]

My father has had fairly rapid progression, but many of the previous comments are similar to what we have seen. He was diagnosed in spring of 2015 at 73 yrs old. It was a night /day sudden change and in retrospect there may have been signs but wrote them off to things like arthritis and tendinitis (a lifetime of construction work will get you there). He gets to a place where it seems that there is a leveling and the BOOM, something gives. He has been using canes to get around the condo, but recently has had his legs buckle and just gone down like a sack of bricks. Bowel function was fine until yesterday and then it wasn't. Breathing was stable and then one day it was extremely laboured. This disease is about the worst thing I ever could imagine and I wish I could have something that tells me what comes next, but we all know that doesn't happen with ALS. My mother isn't strong enough to deal with moving him on her own so I thing in home care will be the next step, but can anyone tell me what the expectancy can be once the disease has progressed to this point? Two years ago he was a fully functional semi-retired individual and has gone from stiff neck (Feb 2015) to being curled up, no control over bodily functions and machine assisted breathing. I don't want to sound cold, but I am a realist and have two sisters who are usually pretty clinical but in this case might be a bit clouded; once we reach this point, what is your experience with longevity? This is the first time I have opened up to anyone about this other than my wife; is it a year, 6 months, 2 months....? It has been such a rapid roller coaster I don't even want to guess.

 

[lgelb]

Hi, John,
First, welcome and sorry you are here.

With optimally-adjusted BiPAP, mobility aids, a lift, help at home, the two major risks before respiratory insufficiency are falls and inadequate nutrition. A feeding tube may be the next decision. Assuming he gets one if he needs it, though of course he doesn't have to, how long before respiratory insufficiency? Without knowing anything about his lung/chest function, could be a couple of months or years. And when we talk about life expectancy, there is also the concept of how much and how long he wants to live.

When you talk about lack of bowel function control, do you mean urgency, diarrhea or constipation?

Best,
Laurie

 

[affected]

John I'm sorry about this diagnosis.

No one can say, truly we just can't there are so many variables.

Some PALS seem to be doing well and just suddenly don't wake up, others seem to progress rapidly and then plateau and have months or years left. Then add falling, head injuries, aspiration pneumonias, and we just can't tell. I think we all wish at least in part that we could know.

Your mother should have equipment to deal with moving him and yes she will need help.

 

[Atsugi]

John, as others have said, there's no saying. Longevity is too unpredictable.

Since I can't answer the longevity question, I'll give some "new guy" advice to welcome you.

We just take it day-by-day. Each day you wake up, see what functions you've got left, and plan the day to be as happy and comfortable, given what you've got.

My personal philosophy toward PALS is to give them anything they want without question, and to support their every need with a smile. This is part of giving them a stress-free, pain-free, fear-free journey.

Although you didn't ask, I'll offer this, too: Usually I advise giving a wide berth to the wife. She's the one who he chose to spend his life with 50 years ago. Normally, what she says, goes.

Laurie (wise one, she) brought up "how long he wants to live." I agree. If he wants to go, that's totally reasonable with this disease. Not everybody wants to be "a fighter."

In fact, given the fact that, the longer you live, the more likely one will enter a totally locked in phase, I'd personally want to go quickly.

 

[JohnDC]

Thank you for the input all. To answer your question Laurie, it was an unexpected sudden discharge, that was the first time and it took my mother by surprise, there had been no issued with bowel control prior to this. My parents are lucky in a way, they had sold their house two years ago and moved into a seniors only condo with lots of support and medical staff/home-care staff on hand. My sisters and I are close, and one of my sisters is a veteran Respiratory Therapist, so that is a plus for us. My mother has been very difficult, in denial to some degree, and feels like she has been forced into something she didn't ask for (which she has but makes sure we all know it). Sometimes it is hard to listen to the things she complains about, but I know that this situation has completely altered her life as well and we do give her a wide berth and try to keep her grounded without being judgmental. She is concerned that there is a some depression setting in and I talk with him multiple times a day and hear it as well. I don't think there is any fight there quite frankly. He doesn't want to do what the OT tells him, and complains about the high calorie diet and won't eat a lot of the things he is supposed to even as he is losing weight. The doctors say his blood pressure issues and.....I just realized that he doesn't want to fight. That is OK, this life is not the life he could ever endorse or stomach. I don't mean to be disrespectful of those who are meeting this head on, but this is not my dad's way and I can see why he is defeated. Thank you all for your advice and for allowing me to hijack this thread, that wasn't my intent, but you have brought me a little clarity and I appreciate that.