Old 07-17-2013, 05:11 PM #1 (permalink)
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Default Consistency of decline

Do most ALS patients find that their decline in strength and ability to move certain things like fingers and toes is quite consistent in its downward trend, or do people have rather wild swings in the ability? Meaning, for example, let's say you had lost the ability to move your toes up and down, then after a few days that ability came back quite dramatically.

I have the idea from reading some posts here that function decline in function displays consistent, linear change, without marked ups and downs. Thoughts on that?
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Old 07-17-2013, 05:35 PM #2 (permalink)
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Default Re: Consistency of decline

Once I lose it, I can't use it... no more. Wish I could find a more poetic way to say
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Old 07-17-2013, 05:42 PM #3 (permalink)
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Default Re: Consistency of decline

No two PALS decline at the same rate.
PALS are like snowflakes. Two snowflakes do not have same shape and geometry, the same analogy could be applied to PALS.

Even the start of the symptoms onset is different.

I attend to monthly PALS/CALS meetings sponsored by our Local Chapter of ALSA.
I've heard stories from PALS/CALS during these meetings about how their ALS symptoms started and they differ greatly.

For some, the symptoms started with weakness in one leg and foot drop.
Others started with hand/arm weakness.
Some others started with weak trunk muscles (including diaphragm).
Others started with neck muscles weakness.
Still others started slurring words and a weak tongue that later atrophied (Bulbar-onset).
And the list goes on and on...

There even some PALS who decline so sharply in matter of a few months whereas others decline very slowly and can live up to 10 years (the late Forum Moderator Al Pettit lived about 10 years after his diagnosis, he was Lim-onset all the time, no Bulbar problems).

As you can see, it's very difficult to gauge and compare the disease progression of two PALS as we all are different.


Lastly, there are no "Ups and Downs" in ALS. Once a function is gone...it's gone.

Best regards,
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Old 07-17-2013, 06:12 PM #4 (permalink)
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Default Re: Consistency of decline

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Originally Posted by Cricket View Post
Once I lose it, I can't use it... no more. Wish I could find a more poetic way to say
This is the heart of my question.
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Old 07-19-2013, 07:31 PM #5 (permalink)
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Default Re: Consistency of decline

My doc tells me that for an individual case, progression is somewhat linear. After 3-4 visits during which they chart your breathing, strength, etc. they can predict your trending. They don't like to do this since wild swings are possible, but you should ask. Sobering, but helpful.
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Old 07-19-2013, 08:10 PM #6 (permalink)
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Default Re: Consistency of decline

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My doc tells me that for an individual case, progression is somewhat linear. After 3-4 visits during which they chart your breathing, strength, etc. they can predict your trending. They don't like to do this since wild swings are possible, but you should ask. Sobering, but helpful.

So I can be sure, can you clarify your meaning here?
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Old 07-24-2013, 02:50 AM #7 (permalink)
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Default Re: Consistency of decline

What is your question?
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Old 07-24-2013, 08:45 AM #8 (permalink)
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Default Re: Consistency of decline

Do you mean a particular symptom, let's say ability to move toes, can have wild swings? Meaning it gets bad, then becomes OK again, then bad again, then becomes OK again? Is that what you mean?
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Old 07-24-2013, 02:03 PM #9 (permalink)
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Default Re: Consistency of decline

Personally my progression in areas of limb and appendage involvement has been remarkably linear over many years . However bulbar symptoms, not so much. My first symptoms were bulbar including speech difficulties and swallowing. My swallowing problems were actually worse 10 years ago than they are now. Speech is very erratic. I've had periods when I am barely comprehensible and others when I am quite clear.

So if someone tells you that there no ups and downs in ALS, take it with a grain of salt. Probably best to listen to people's accounts of their own progression rather than to generalisations of what they think others experience.
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Old 07-24-2013, 03:12 PM #10 (permalink)
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Default Re: Consistency of decline

John,the speech thing if due to umn problems can do that.
Mine is like that depending on how good/bad bulbar spasticity is.
with pls mine has been slow but typical progression...from legs to bulbar in approx 7yrs and slow steady progression of all areas.
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Old 07-24-2013, 03:42 PM #11 (permalink)
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Default Re: Consistency of decline

Olly, that's interesting that your speech can be up and down as well. How do you determine how severe your bulbar spasticity is at a given time?

If speech problems are spasticity related, I wonder if botox injections in the throat/larynx area (yikes!) would help.
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Old 07-24-2013, 05:58 PM #12 (permalink)
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Default Re: Consistency of decline

Well,depends on area john.
My speech can be strangled (throat spasms),,slurred ?or pronounciation problems (jaw/facial muscles)
The main problem with me is jaw/lower facial spasms and weakness.
When real bad my jaw is very stiff causing lower facial spasms and twitching.
I suspect the muscles around mouth are effected.
Being overly tired can make speech worse.
I have been offered botox for jaw/facial spasms when they get bad but botox can cause weakness so should be used as a last resort.
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Old 07-24-2013, 08:23 PM #13 (permalink)
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Default Re: Consistency of decline

How to best chew and swallow food when the jaw muscles and tongue coordination is sketchy
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Old 07-25-2013, 05:20 AM #14 (permalink)
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Default Re: Consistency of decline

My experience is when it's gone that's pretty much it.
For me I have good and bad days, sometimes with some quite better than others. But the overall decline is a steadily moving thing
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Old 07-25-2013, 09:27 AM #15 (permalink)
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Default Re: Consistency of decline

Caroline,

My speech impairments are mostly in pronunciation and slurring. From what you say I guess these are caused by spasticity in jaw and facial muscles. I don't actually notice spasticity there nor spasms. I don't experience clenching.

John
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