For The New People: Perceived Weakness and True Weakness

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notme

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More and more new folks here are asking questions about weakness. Here is a very simple explanation in layman terms.

Perceived weakness is a 'feeling'. It's not an actuality. Clinical weakness will show up on a clinical exam--often weakness you have not yourself noticed yet.

Perceived Weakness:

You feel shaky. Your arms get tired when you dry your hair, hold your arms over your head, or your hands feel weaker when you try to grip something.

Legs are weak. You think you are dragging your foot. Your legs shake. You can't walk as much as you used to. You can't run as much as you used to. Walking up the stairs exhausts you.

Your tongue feels funny. You think your words are slurring, but others haven't noticed it yet. You choke once in a while on a piece of food. Your throat clicks when you eat. You can hear it clicking

True Weakness.

You don't feel shaky--you ARE shaky. You can't lift your arms to dry your hair. It's impossible to lift one or the other.

Your hands are simply unable to grip something like a door handle. You don't have the ability to lift a jug of milk from the fridge. Your fingers absolutely will not push the buttons on a microwave. (This can begin with just one finger)

With our legs--you lift your foot and the toes literally drop down. You can not hold the foot level. You can not walk on your heels.

In Bulbar onset, the voice will gradually get thick and you will slur. Other people will notice it. You are choking quite often on liquids at first. Not just once--but most of the time.

Sensory Issues

You have tingling
: Good news--ALS does not cause tingling. Tingling is an issue within sensory nerves. ALS does not affect sensory nerves.

You have pins and needles
: Again, good news for you. ALS does not cause this sensory issue either--though many things do, ALS isn't one of them.

Your leg/arm is numb: Again, good news. This is also a sensory issue. ALS doesn't affect sensory nerves in any way.

The folks here with ALS or other MND issues have gone to the doctor when one or more of the above TRUE WEAKNESS STRIKES. For most, it's a loss of ability in a hand, foot, or in their speech areas. Motor Neuron Diseases like ALS almost always start Distally in one limb at a time. While there are conditions that have different presentations, the forum here is only able to answer questions about ALS.

Please--before you hit post--read the post by Sadiemae, and read all the Sticky Posts. If your answer is not there, ask away. Don't be amazed when we say "Have you seen your doctor yet?"

If the answer is no--you can be sure that will be our response 99% of the time. We are not doctors. We are not ALS specialists. We are folks living with ALS, caring for those with ALS, or we've been here so long for other reasons, we're part of the family here. We do our best to be supportive, but please, state your concerns clearly, tell us what tests you've had and the results. Keep your questions to one post so we don't have to look for your concerns.

Remember, many here are answering with one finger, or a toe mouse, or head gear with an eye-tracking program. Most of us can't type fast, and we go to great effort to help. Be considerate of those that answer you.
 

scotslassie

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Excellent. Very well put across. I hope people read this thoroughly before posting. It might make them stop and think about the effort involved, by many members on this forum, to answer their questions.
I dont think many people realise that their questions are being answered by people who are actually affected by this disease, or, indeed, how this disease actually affects people.
 

kenwood54

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Wish there was a "like" button here for posts like this. Thanks so much for taking the time to post.
 

momap53

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Excellent post! (again) Let's try to keep it "bumped uP!
 

notme

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Bumping this.
 

vzandt

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It should be required reading before anyone gets to post. Lol
 

CGARS

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Well stated.
There have been so many recent questions that should NOT have been asked if the stickies were read.
I think some new posters are just too lazy to bother.
Cheers,
Casey
 

notme

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All the stickies should be required reading before posting is allowed, LOL, I agree.

I doubt anyone that NEEDS to read this will, though. Just like Sadiemae's excellent post.
 

vzandt

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For some reason or other they don't believe what we say. Bump it up again notme
 

nikr59

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For what it's worth, I have read them all and have found it helpful. One question remains though. Then all of my concerns should be gone and I can happily move on to the hypochondriacs forum.

My question: With ALS does one go merrily along lifting jugs of milk, pushing microwave buttons and holding your foot level one day then SHOCK, the next day you wake up and can not lift that jug of milk of push that button? Is there no between period where you have perceived weakness, where the jug is a little more difficult to lift than last week or keeping you foot working the pedals gets more an more difficult?
 

notme

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Dunno, nick. I just discovered I couldn't do things anymore. At first, other muscles pick up the slack or the nerves are being partially fed by other nerves. Weakness progresses, but ultimately, it's things get harder then impossible. It's not a feeling. It's an actuality
 

brooksea

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No, you just don't wake up not able to do something. ALS is insidious. pALS STILL think they can do whatever they are setting their mind to, only to be surprised! For example, tuning a round door knob becomes a pain in the a$$, then it becomes a real chore, then you have to use one hand to help the other, then you have to use the helper hand alone, then...you have to ask for help. Mind you, this happens over a long period of time. It also usually starts with just one area of muscles by the time one realizes their is a problem.
 

vzandt

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You walk...and then you fall. And then you get up and then you fall. You don't know yet that you cant walk. You only know that you keep falling. Untll you cant walk without holding on to something. A wall. A cane a walker...a wheelchair:(
 

notme

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Thanks, Toto

I wish Sadie's wonderful thread hadn't been buried. Wish they'd find a few mods so stickies could be made again.
 
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