A Long Plateau

Status
Not open for further replies.
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.

And, if you'll note, I answered that question before the rest of the ruckus started. Nobody's crucifying anybody here.

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.

I'm not angry. I'm simply expressing an opinion, just as you are doing. And that opinion is that speculation about longevity in this forum is distasteful and insensitive to those PALS and CALS who are experiencing rapid progression. It's an opinion, not a law. You don't have to agree with it and I expect that you don't.

Had you asked this question in the General ALS Discussion forum, I'd have been inclined to let it pass. It's a theoretical question, like many others we discuss on that part of the board.

But, as I stated before, we have had a number of PALS who have progressed much more rapidly than average lately, at least from the stories told by their PALS. All I'm asking for is a bit of discretion and a bit of compassion for those folks in the subjects we choose to discuss here in this part of the forum, where those CALS come to get what they need to make it through the next day, not to have the fact that their PALS is progressing faster than usual thrown in their face.

You are of course, entitled to disagree.

And, as you should have noted, I did answer your question. I think I'm the only one who even bothered to try, so you're welcome for that.
 
Barbie - I think since you are a CALS you posted in the right place and have every right to ask questions about what you must worry about every. single. day. - for 4 and 1/2 years.

My Dad was one of the fast progressors - diagnosed in Feb and deceased in Aug of the same year. I am not offended by your question. As hard as it has been to move on without him, and I still miss him every day, we are no longer consumed with living with the day to day caregiver stress of ALS. I can only imagine what that is like - to wake up every day for years worried and wondering about what is going to happen and how. It is true that no one can predict and each person is different but we are here to share our experience and our stories to support and comfort each other.

Your strength and perseverance are astounding to me and your right to ask questions is equal to anyone else.
 
As the wife of an ALS patient that had a very rapid progression, I want you to know that I find no offense in your questions at all, Barbie.
TRFogey, thank you so much for thinking of us and putting our feelings first. I can say truthfully that I think that it is important that each member of this forum, CALS and PALS, never feel inhibited about their questions. We all know going into this that our paths will be different in terms of time.
 
Oh good Lord. I have a million questions, but God forbid someone get offended by them! I find ALS offensive! I am a caregiver for my husband. And if a CAL has a question, or a comment, why does a PAL get to be offended by it?

Maybe I need a nap, waking up 3 times a night to hold the urinal, bent at an arkward position is killing me.....
 
Well I can only say that my disability began in 2007. when I could no longer walk either aided by a Cain or walking stick as I called it then or by my plastic braces. This foot drop issue on my left foot began in 2003. Today I am completely paralyzed (ankles and feet) I use a wheel chair or an electric scooter all the time- All I can say is that I can walk like Frankenstein wife and have no balance - I been on disability for 2 years and can not any longer work as a teacher- This May I was diagnosed with PMA- ALS? How is this possible the muscle and nerve specialist says; No cure, some take vitamins or exercise or both, he said pray and get your business in order. 2 years he said. Plato to me I have been in one- the 2 years I do not know? Will keep you all posted, thanks for the opportunity to share. By the way I am already having symptoms both arms, chest and lungs. I still have lots of pain on legs and back. Figures!
 
I'm rather reluctant to post on this thread....I'd kinda like to post a few questions to gauge whether Scott is progressing fast, slow or rather "normal" (as dumb as that may sound). I realize that everybody is different, however, it might ease my mind if what I perceive as a "fast progression" is in fact normal for others. HOWEVER, I darn sure don't want anybody busting my chops....I'm not trying to put the man in the grave any earlier than possible--matter of fact, I kinda dig him after 25 years and would like to keep him around as long as possible. Is it wise to post the question here or is there another thread/topic/place better suited so I don't annoy anyone? Thanks!
 
I say ask your questions....isn't that why we are all here? My husband was diagnosed on 3/11 and I too would like to know a few things for planning things for his comfort....I don't think we are supposed to be afraid to get answers here.....I think it goes without saying (or at least it should) that we all want our PALS to be with us for a long as possible....We should not have to defend ourselves when we are just trying to obtain more information. (Sorry for the mini rant....kinda bad day today)

No busting of chops from me!

D
 
I can understand from a caregiver perspective what questions are and I have to admit I've probably asked questions that are deemed inappropriate by some. There is nothing wrong with asking any question you have, this is what this forum is for. I have found so much comfort and support here. I did ask the doc at our last clinic visit the rate of my husbands progression. He said it was moderate. Sure seems really fast to me. I imagine no matter what the progression rate is, it will be too fast (even if there is a plateau for several years). I don't think we are ever ready to lose a friend or loved one. My husband is young, we have young children. I wish I could find some peace with this and not be angry at everything, even that cute old couple walking hand in hand. I know that will never be us. I am encouraged to hear of those who are living longer. It gives me hope. My husband doesn't have any symptoms in the bulbar area, but I have too often wondered when that will begin. I, for one, will continue to add my comments when I think they will help someone, and ask the questions I hope someone else can help me with. I don't think anyonewho asks questions wants to make things harder for someone else, they are looking for support and encouragement. I think we all need that.
 
Barbie, I'm very, very sorry your husband has ALS but very, very glad his conditioned has remained stable for so long a time.

Statistics are often quoted by the medical community when a person is given the news they have ALS. One of these statistics given is that of 3-5 years. You are just about done with that and many haven't made it as far as your husband. Blessings on you for the excellent care you are giving him and may he continue to remain on his plateau.

There is no definite answer to your question, only that given time, it can be expected that your husband's respiratory system will likely fail and this is something you should probably already have been informed of. If you haven't already discussed the issue of trache/vent with your husband, you may want to consider doing so.
 
I got sent to the moderator. I feel so ashamed...
 
Hi all, I said I wasn't goingto post on this thread anymore so I guess I lied. Thanks for all the responses--it is amazing ot me how varied the progress is for all Pals. I was starting to wishfully think that maybe my husband didn't have ALS--very childish thought but couldn't help but think that maybe just maybe they made a mistake and he has something curable! LOL not the case of course. We went to the Neuro last week, and he was surprised to see how little change there was--he joked with my pals that it would have been nice if he could have slowed down before he was completely wheelchair bound and unable to move his arms and legs.

I guess you just have to be grateful for what you have everyday because it could change at any time. Blessings on every Pal and every Cal!
 
Status
Not open for further replies.
Back
Top