A Long Plateau

[Barbie]

So my pals has had an ALS diagnosis for 4 1/2 years. Originally he progressed sorta fast--he went from normal to paralyzed and wheelchair bound in 2 years. Then he seemed to start slowing down and He seems to plateaued and has been really really slow progress for the last year. While there are little changes, his breathing is still good.

What is the longest plateau any of you have heard of? And, if everything else is 80% gone, would that mean that breathing is next when he does start going down hill? I know there are no set answers but any theories you want to share ? Just wonderin'...

 

[Ms. Pie]

I don't know Sweets. Everyone is different. I wonder about stuff like that too. How are you holding up Barbie?

 

[Barbie]

feeling pretty good--working on solving bathroom issues and making life a little easier! Thanks Ms. Pie!

 

[trfogey]

How does a PALS progress when he's already paralyzed? Bulbar and respiratory appear to be the only options. And not every PALS gets disability in every region of the nervous system. See Stephen Hawking as the most notable example.

 

[Atsugi]

"Paralyzed" in popular discourse can mean a lot of things to many degrees.

-- Extreme muscle weakness, so walking or lifting is impractical.
-- Total inability to move. The muscle doesn't react at all.
-- All four limbs are useless.
-- Can't control torso or head movements.
-- Can't smile or blink eyes.
-- Can't move eyeballs left or right.

 

[Barbie]

Trfogey--what region does Steven Hawking not have a disability in? I always thought he was totally disabled.

Atsugi--I used the term paralyzed loosely to keep from writing so much. we all know how differently ALS affects each pals. My pals disability is great but not complete. his breathing is good which is why he is still alive after 4 1/2 years. I guess paralyzed is a bad word for most pals...when I say paralyzed I think of a quadrepelgic or a paraplegic who was injured in an accident not really a pals. Maybe we should rate them on a scale of 1-10! I guess I should have simply said he has lost most function and is wheelchair bound.

 

[trfogey]

Trfogey--what region does Steven Hawking not have a disability in? I always thought he was totally disabled.

My apologies. I meant to say that some PALS do not get complete disability in every region of the nervous system, although most will, given enough time. Hawking has continued at about the same level of functionality for about 20 years or so. If that's not a plateau, what is?

And, frankly, given the higher than usual numbers of PALS losing their battles with ALS in shorter than average time lately, I find this discussion a bit distasteful, so I'll depart. Just seems a bit insensitive to me to crow about how well your PALS is doing when other caregivers are losing theirs, but what do I know?

 

[valg]

I think that was rather unnecessary. Hardly think Barbie was 'crowing'!
If you found the discussion 'distasteful' why comment.

Thought this was a forum to help each other - not put others down.

 

[Barbie]

Crowing?--that is certainly not my intention and I am insulted by that term. And what is there to crow about--we are on an ALS forum and my husband is dying from this crappy disease like everyone else. Perhaps it won't be so distasteful if tomorrow my husband wakes up and begins progressing rapidly again--because that could happen. I feel terrible for everyone on this forum--we are all dealing with a terrible disease that is hard to understand and is just brutal. I had a sincere question perhaps I phrased it wrong or you took it wrong? I apologise if anyone reading this posting was hurt by it--truely.

 

[rose]

Barbie,

I did not take it that you were crowing (or whatever a more tactful word would be) in the least. Sometimes people just take something the wrong way, either they mis-read or have something else going on in their own lives that colors how they "hear" something. Just yesterday I was at a cosmetic counter of all places, and the lady who was next after me to be waited on, flung the tester eyeliner pencils on the counter (at) the sales lady and stalked off saying how rude she was. No one could figure out what caused it.

So.... about progression, mine has been slow and steady, and, from what I've been told, normally the first year is a good predictor of the speed one will continue with. Its wonderful that your PALS was able to plateau. I think sometimes when stress is removed (when possible) it really helps with this, at least it has for me. Breathing is #1 important, so that's really good that he still is strong in this area. Good luck to you and your family. Its always encouraging to hear of anyone who continues to stay pretty much the same for a period of time.

 

[trfogey]

And what is there to crow about--we are on an ALS forum and my husband is dying from this crappy disease like everyone else.

As a matter of fact, your husband is not dying "like everyone else" from this disease -- he's dying much more slowly than the average PALS does. As am I, having been diagnosed a few months later than your husband.

Your husband and I have outlived, depending on how you read the numbers, 80 to 90 percent of the other PALS that were diagnosed the same month that we were. Isn't that enough of a longevity record to be satisfied with? Do you really need to compare longevity and condition and "length of plateau" to be assured that your husband has beaten the odds that the doctors gave him the day he was diagnosed?

And, yes, I think it's distasteful to ask or answer any questions concerning projected longevity with ALS on this forum. Because the answer is -- nobody knows. And it should be sufficient to leave it at that.

Unfortunately, it rarely is left at that.

 

[Atsugi]

TRFOGEY, you have every right to take offense. From your position, it is certainly an offensive discussion.
I wish there was a better way for us to communicate.
BARBIE, you have not committed any offense at all, whatsoever. It's in the eye of the beholder. I, for one, would insist that you and others can use this forum to explore every curiosity, big and small.

 

[Miss]

Rose, you are so right! I am normally an extremely patient person. Rarely do I fall apart or "snap" for no reason. Yesterday, the weight of my loss slightly overwhelmed me and I sort of snapped at being overcharged 50 cents!

 

[Al]

Tr, somebody crap in your corn flakes again? Try to be your nice helpful member please. The lady asked a question. Right or wrong. No reason to crucify her.


AL.

 

[Barbie]

trfogey-save some of that anger for your congressmen. You are personally attacking me and I think it is unjustified. That is what makes people on the forum afraid to open up and share real thoughts and feelings. If you don't like what I ask then read another post--I do that all the time. If you want to respond to me again here go ahead--I won't be posting any more on this line so you can get the last jab in if you like and this post will move down the page and disapear.

BTW--I didn't get the memo with the list of approved topics based on your progression and length of illness.

Once again--I sincerely and truly apologise to all pals and cals if I offended. My heart hurts at the thought that I might have, there is enough suffering going on without inflicting upon each other.