Question on how progression works.

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slopokahontas

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PALS
Diagnosis
08/2014
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US
State
Az
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Tucson
I'm wondering how this disease progresses. I have foot drop and I knew I was clumsy, but didn't realize how bad it was until I had my exam. My legs feel weaker. My question is, am I going to wake up one day and fall on my face, or will I just slowly have a harder time? Could a bunch of muscles all weaken together? My hand is weak, but seems to be worse at night. Probably silly questions, I just don't want to be surprised.
 
We would all like that crystal ball. Unfortunately, no way to predict what comes next, or whether it will be fast or slow. Sorry- know that's not what you wanted to hear. Donna
 
ALS is one big surprise after another sadly. I say prepare for the worst but hope for the best xo
 
So, it's possible to wake up one day and not walk etc?
 
My spouse recently passed from ALS. He was fine Wednesday at dinner, couldn't swallow at bed time. Was gone by Monday.

Not the norm by any means! Not even sure now what exactly happened..he refused to go to hospital for treatment or tests. Didn't want to get any worse. Decided to go on "his own terms, as much as possible".

He did not just wake up one day and couldn't walk but he did get progressively worse, very quickly and started falling. Went in a wheelchair right away for safety.
 
Slopokahontas, perhaps it will help if I tell my PALS story.

My wife had an exceptionally fast progression. Nine months from footdrop to death. This is from my memory:

The first part of her progression was the slowest. We would have about a week's warning before the next muscle totally failed. So there was some warning. It didn't happen all of a sudden.

The progression was also linear, one foot, that leg, the other foot, that leg, one hand, that arm, the other hand, that arm, then the torso and neck.

The last part of her progression was fastest. In the same month the neck muscles were gone, the tongue and throat followed quickly, then the breathing was too little to expel enough CO2.

That last week, her urine turned dark and cloudy, and she lost all ability to communicate except blinking. During this time, she told us that when she felt air hunger, she wanted morphine instead of oxygen. Her pupils were pinpoints due to the morphine. At the end of the week, one morning, she lost the ability to blink. That night, her heart stopped, her pupils opened wide, and she was gone.

I hope this helps answer your question.
 
My mom and sister went in there sleep. It sound like am going to go more like my dad did an they didn't have this.
 
We can't tell how fast anyone will progress but I feel strongly to say this.

DO NOT FALL. If you have leg onset, get assistance NOW so that you can remain mobile while you can SAFELY. When you can't walk safely with aids, get in a wheelchair, this is being smart!

This is a guarantee - if you fall and injure yourself, it WILL SPEED UP PROGRESSION!

Please take this part of the disease seriously.

My Chris had many falls without serious injury. For me he was a ticking time bomb - he would not use any assistance, and he was having falls, he would have to have a serious injury.

He was bulbar onset, then the arms, then breathing muscles, but he would fall. His left arm and hand were bad, his right wasn't too bad though not good. He fell and ruptured the tendons in his right shoulder. Of course this never healed and the pain was shocking.

I went for weeks, knowing inside that he was going to split his head open, that this was next on the agenda for how bad his mobility was.

He continued to refuse to use any walking aids. He fell and split his head open, concussion, broken ribs, injured left shoulder and hip.

These things all hastened his progression, caused a lot of pain and PALS do not heal when muscles or tendons (which attach to muscles) are injured.

I know from all my involvement with PALS that those who protect themselves and use aids for safety do not assist the monster from taking their bodies out.

My Chris had bulbar symptoms for nearly 9 months to diagnosis, then lived 11 further months. He may not have lived longer without those falls, but he would have had a far better quality of life without them, there is no doubt about this.

I say this to you with sincere concern for both you and all PALS. This disease is bad enough without helping it along by not taking safety seriously.

hugs,
 
Slopokahontas, for us, my pals also started with foot drop. Diagnosed in sept. 2012, ( foot drop started 2 yrs before) left foot, then left leg, then as his progressed it went to hands and arms, but just weekness, he is still able to use them, not very good but still in use, then about three months ago, the caregivers were having trouble transitioning him, seemed like I was the only one that could get him up(to stand), then for us it was like over night, he just didn't stand anymore.....we used the hoyer for everything. Now, I have noticed that breathing is being effected tremendously, and core muscles are getting weaker, can barly hold hisself up, but still eating fine....thank God. So I guess I was just sharing to let you see how different everyone is, and the loss of muscle seems to be all over the board, I'm sorry you find yourself here by the way, believe me no question is silly, you need to know these things, and please please listen to Tillie,
She is very wise! And know we are all here for you!
 
Everyone seems to have a different situation. With me I have an increasingly weak left ankle (I use a cane about half the time) and my left arm just hangs down now. I am diagnosed as having "Flailing arm" ALS and I can still use the hand to tie my shoelaces and with the aid of my right hand I can position it to assist opening containers. But that's it. I've had this situation since April or May of 2013. I'm very grateful that my symptoms are (so far) confined to these 2 areas.
 
>DO NOT FALL. If you have leg onset, get assistance NOW so that you can remain mobile while you can SAFELY. When you can't walk safely with aids, get in a wheelchair, this is being smart!

>This is a guarantee - if you fall and injure yourself, it WILL SPEED UP PROGRESSION!

>Please take this part of the disease seriously.


this cannot be emphasized enough. and stay away from sick people. and get flu/pneumonia shots. and take vitamins. seriously.

at a min:

Centrum Silver Men 50+ TAB 1 per day by mouth
Vitamin C 1000mg CAP 2 x per day
Vitamin E 1000 IU CAP 2 x per day
Vitamin D3 2000 IU CAP 1 x per day
Folic Acid 800 mcg (0.8 mg) TAB 2 x per day

any sign of cold or other malady, see a doc. People w/ ALS should be hypochondriacs as we do not need to accelerate what is already happening.

lastly, express your feelings either here or with someone you trust. Last night I admitted I was having a bad ALS day to Sandy. That can mean a lot ofthings, but she knows ... :)



-----
Max - Monday, September 22, 2014 12:55:40 PM
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onset 9/2010, diagnosed with ALS by Stanley Appel 8/29/2013
It Is What It Is ...

.
 
Progression is different for each of us...but it all Sucks!

Here is my story so far:

September 2013, noticed my left foot not working properly...foot drop, I learned. Could still walk 2 miles with ease with no assistance. No other noted weakness

December 2013, officially diagnosed, still walking 2 miles, but beginning to become more challenging. They could determine weakness in my left hand I had not yet noticed.

January 2014, received AFO for left foot, now walking about a mile, getting harder. Can no longer work nail clippers or open jars except with tool for jars.

Gradually, the distance I could walk decreased over the months following.

May 2014, Started using a walking stick to improve gait, in addition to AFO.

Walking less now.

August 2014, walking a maximum of about 50 yards. Now using a walker to safely move around house. Still can walk short distances with no assistance, but really this is asking for a fall!

Starting to note more weakness in right side, but still pretty functional.

So that is where I am now. It's been a slow but sure progression. Good news is there is still no breathing or swallowing issue for me at all.
 
for me it haas not happened all at once.
foot drop; then slow progression.
into my extremities, the slow loss of fine motor control....insidious
 
Wow! You guys weren't exaggerating on the extremes of progression. I appreciate the honesty of your experiences. Do any of you feel that stress or lack of sleep worsens your symptoms? I'm having major anxiety over my kids future as well as my own. I enjoy the day and am present, but nights are a killer! Am I alone in that? What do you tell yourself that helps? What about the CALs in this situation? I can only imagine the feelings they go through! What helps them the most?
 
I started counselling as soon as we had a diagnosis. It helped tremendously
 
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