Most dreaded word I have ever heard - fasciculations......

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Buckhorn

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Jan 3, 2016
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730
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Lost a loved one
Diagnosis
12/2015
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US
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PA
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Small town
Just venting here. When we go to bed at night and I feel the ms. twitches / fasciculations in my husbands right arm/shoulder I want to SCREAM!! Rotten, nasty disease ......... stealing away my husband bit by bit and there is not much I can do. I am beyond the panic stage, at this point anyways, but I am aware that these twitches are an indication of the continued slow death of the muscle he has remaining.
 
I totally understand.watching this disease is brutal, having it must be pure hell.
 
I understand completely. The fasiculations are finished in my husband's lower legs--and so are the muscles. They are almost constant in his arms now, and. I try not to think about what that means.

Try, if you can, to not focus on what those twitches mean. Prepare for the future, but then concentrate on what you have. Thinking about what you and he are losing will destroy you.

Hugs,
Becky
 
I get that Becky but yesterday Steve fell but no injuries. Last night he couldnt lift his legs to get in bed or to use his arms to move the blankets. The day to day changes can be so hard
 
You are right Becky, and I do try to keep myself distracted from thinking about what we are losing..... My husband and I are trying to use whatever "good" days he has left to the fullest. We are actually on vacation in FL. Had this trip planned well over a year ago, and I almost cancelled it. Dave's neuro told us to "go - enjoy yourselves", and so we did/are. Dave is still quite functional but says he feels weaker everyday. ALS has hit him globally - all four extremities, chest, shoulders, hands and I feel has progressed quickly since the fasciculations first started in early Sept. '15. But, I am keeping him as active as I can. Walking especially, but it is so hard to judge if he is over taxing himself. We went for a short hike a few days ago and saw nesting Bald Eagles. Dave has always been a casual "birder", and so he was happy, excited, and wanted to walk more/see more. The next day his legs really hurt, and then of course I worry if this causes more muscle to die or exascerbates the condition. Frustrating that I don't know if we are causing more harm, but also wanting to keep the remaining muscles flexible and working.
 
" concentrate on what you do have" wise words! Thank you. I'm of to bed now with a calmer mind. Tomorrow is a new adventure, beating this beast.
 
Buckhorn I still remember the feeling of the fasciculations in Chris's arm at night, when we was fast asleep and his arm would be under my neck. I would lay there awake and wired, and amazed that they just kept on going exactly the same as they did when he was awake.

Trying to pull the focus down to 'one day at a time', and 'taking the best that you have now as something to be grateful for today', is wisdom. It's not always easy. There is so much paradox.

When it's too hard to do that, coming here and venting keeps the pressure released, and even cools the temperature down just a little so you don't boil over xxx

Gooseberry, I'm so sorry, the leap of progression as Steve's legs give out this week is so hard. His safety is so important, I hope he will take that fall as a reminder that he must avoid serious injury. The pain Chris suffered with ruptured tendons and broken bones, stitches in the head, bruising to huge areas - I hope Steve avoids this, it is so beyond cruel.

sigh ... I so hate ALS!
 
Steph, I'm grieving for you and Steve. I know that it's hard to focus on what we have when we are losing so much so quickly. Losing legs and arms at the same time...wow. Matt can no longer move his legs in bed. He grabs the rails and pulls himself over onto his side, but the legs won't follow, so I'm now moving them for him. He knows his arms are going, and some days I can see that he's thinking about what's ahead. It's heartbreaking and terrifying. I think the arms are worse than the legs, but to lose them both at the same time...

Buckhorn, we've been told that any exhertion a PALS can't recover from within 45 minutes is too much. At the same time, it's their journey. Some PALS work at conserving their strength and slowing progression, others, like mine, are determined to do as much as they can as long as they can (quality today versus quantity, or length.
Things are better between us since I (mostly) accepted that it's his choice.
 
Today Steve was able to get in and out of bed. It was extremely difficult for him though. He said the fall etc was because he was very tired. All his symptoms get worse with fatigue but it has never been like this.
 
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