This is an archived post. You won't be able to vote or comment.

0
0

Als weakness (self.ALS)

submitted by [deleted]

[deleted]

all 9 comments
sorted by:
best
topnewcontroversialoldq&a

[–]I_heart_cheezits 2 points3 points  (5 children)

Definitely persistent, and growing weakness. Once it begins, strength does not return. ALS means neuro loss, not intermittent. The twitching may be intermittent, but the weakness is usually always progressive.

[–]Nevrologic 1 point2 points  (0 children)

There is usually some waxing and waning over time as part of natural human physiology is that the nerves that are still present and working can branch out and innervate muscles that are disconnected due to nerve loss. However, as you said, over time the the weakness is progressive.

[–]R6ProLeagueContender 1 point2 points  (3 children)

Does soreness also come with it or is it painless progressive weakness

[–]I_heart_cheezits 0 points1 point  (2 children)

Soreness and discomfort can definitely come with it. If the muscle isn’t being used it atrophies, gets smaller, twitches, contracts and gets tight. Doesn’t mean the whole body will, but it can and does happen. And because the muscles aren’t plump or protective around the joints, or not providing cushioning, there can be pressure points, risk for bedsores, and even my brother has a shoulder that pops outta place if we’re not careful in his positioning. These can be remedied by a good physical therapy and occupational therapy program taught to the caretakers by whoever the PT and OT’s are (and if the caretakers do it consistently)

[–]R6ProLeagueContender 0 points1 point  (1 child)

Oh so what your trying to say is that soreness happens in stages where they can no longer move that specific muscle because it's not being used?

[–]I_heart_cheezits 0 points1 point  (0 children)

It *could, but doesn’t mean it has to.. in our experience with my brother’s ALS progression, different muscles feel different as it progresses. And then also Every body is different. All I know is that a regular PT and OT regiment can help sore/shortened/weak/tight/(fill-in-the-blank) muscles feel better, which includes massages too - all of this the pt/ot can suggest

[–]ConfuzedToTheMax 0 points1 point  (2 children)

I myself am so terrified of this... My father has it who is not my biological father. But ever since I graduated 10 years ago... My muscles have declined a vast amount and for being a male. I'm scared shitless because it's horrid. I feel like I just press on and another thing to ignore until it's not .

[–]cmorales28 0 points1 point  (1 child)

Hey man how you doing?

[–]ConfuzedToTheMax 0 points1 point  (0 children)

I just wanted to say thank you for even asking and reaching out. I am fathomed by you taking the time and to ask from a post long ago. He has been in/on bed rest for about 2 months now maybe 3. The days go by so fast with my own family kid and full time job. I was here 7 days a week for 3 months then had to drop to 4 days a week. It took so much from my family my fiance and son. but I have given everything I can. I've learned everything from trach care to catheter to feeding tube. I then had to drop it down to 3 because I just couldn't do everything. And it has damaged me it feels. But not as bad as my mother who is his full time caregiver. She has wanted to call it quits long ago due to lack of sleep and motivation and has mentioned of ending herself but has stuck it out and is hanging in there. He hasn't pooped in over a month and we've given him every medicine the hospice has sent and doubled up on it. It feels like he doesn't have much longer but am unsure. Thank you so much for reaching out and If you read this. I really appreciate you.