Question: Do limb onset symptoms always progress to bulbar ones???

[melly37]

My Mom has the limb onset form of ALS and was recently told that it is possible that she may never develop the problems with swallowing, speaking, etc (bulbar symptoms). Can anyone speak to this and say as to whether they know this to be true or if the Dr. was simply giving my Mom false hope?

Thanks,
Mel

[liz]

Actualy Mel, I was also told that at my ALS Clinic. Speech and swallowing might not be effected but breathing eventually will is what I heard. Since we are effected in different areas in different orders, I just took this to mean that I might die of breathing problems before my speech and swallowing go. Maybe I misunderstood???

Liz

[Al]

From my understanding of how it works. If you live long enough you will eventually get bulbar symptoms but you would probably be on a vent anyway by then so bulbar symptoms would be a moot point by then. But then I have been wrong on occasion before. AL.

[hboyajian]

My dad had limb onset so far as I can tell, since he began with difficulty walking and then the muscles in his back and neck gradually gave out. However he was not diagnosed until he became unable to swallow solid food (I assume this is bulbar symptoms though no doctor stated it in those terms). He was still breathing on his own at the time. He was still able to walk short distances, get in and out of the tub with grab bars, speak, and write (shakily), even though his swallowing was increasingly difficult.
I had got it in my mind that he would follow an "ALS Progression" sequence that entailed becoming unable to walk or move his limbs before his breathing failed completely. I had thought he would be able to use a bi-pap machine to assist his breathing for a time before progressing to a yet more serious stage. What I have learned is that the progression of the illness is very individual, and no one person will be exactly like the next. People here on this site said that, but I didn't quite get it.
I'm not sure now if this addresses your question but I guess I'll post it any way.

[Paty]

My husband did go from arm and limb onset to the bulbar one, although he can still breath without a BiPap, etc. he's speech is slurred and I can barely understand what he's saying. His breathing problem at night is the phlegm, so he asks me to turn him on his side almost every 45 minutes which helps him to sleep.
He's swallowing is also affected, but wouldn't go for a a PEG; it takes me about an hour and a half to feed him, although slowly he eats meat, I get him filet mignon which is soft and easier for him to chew, since he doesn't like chicken nor fish, sometimes I convince him to eat chicken salad, I feed him lot's of vegetables even broccoli, cauliflower, carrots, except corn, because it get's in his tooth and it bother's him a lot.
And believe it or not, GrampAL can tell you, he keeps on smoking, of course with my help.

Guess everyone is different, some people's ALS runs slow, other's goes very fast, my husband started with symptoms around June 2005 and was DX Oct. same yr, at that time he could still walk with my help, right now he depends totally on me.

Hope to have been of help.

Paty
Husband's Caregiver
Baja California, Mexico

[hope]

My husband started out with limb onset and now has symptoms of bulbar.

Sandy.

[hope]

Paty my husband is having the same problems as your husband. I too am guilty of helping him smoke a cigarette, but as he says to me I enjoy it and the way I look at it he has lost enough I am not going to complain about his smoking.

sandy.

[Mark]

Hi Mel:

How clear is that she has ALS and not lower motor neuron disease? I have a variant of progressive muscular atrophy confined to my upper limbs. Although one neurologist specializing in neuromuscular diseases jumped to the conclusion that I had ALS three others were definite that this was lower not upper motor neuron disease.

Good luck,

Mark

[Paty]

Hi Hope:

Well the truth is I stopped complaining about my husband's smoking, it never really bothered me, but it made me apprehensive as I thought this would get him in trouble with his breathing but apparently it hasn't, and like your husband says, they really enjoy it.

Thanks for your comment, it really made me feel better.

Sincerely,

Paty
Husband's caregiver
Baja California, Mexico

[CindyM]

Paty - you are a sensitive, compassionate, and caring caregiver who never complains about the difficulties of this horrible disease and what it does to both you and Jorge. You deserve all the credit in the world! Love, Cindy

[Pollyanna]

Hi everyone.

I was very interested in this question because my husband is limb-onset, was diagnosed in September, and I'm just now beginning to notice some "bulbar" symptoms....coughing up phlegm (sp?), breathing difficulty sometimes, slightly slurred speach, etc. His brother had bulbar onset, and I thought his progressed quite rapidly. When we were diagnosed I understood that limb onset was supposed to be a slower progression, but we both feel like we are on a runaway train!! Every new move I make to provide quality care seems to be one or two steps behind this crazy disease!
In answer to the original question, I don't really know if it ALWAYS progresses to the bulbar symptoms, but I'm afraid we are just around the corner from it, and I'm really getting scared. We have agreed not to put him on a vent, and I know what that means...I'M NOT READY FOR THIS!!!!!

Thanks for letting me cry on your shoulders...it always helps.

God bless you all,
Pollyanna

[Al]

We've got big shoulders up here in the frozen north. Go ahead and use them whenever you need to. AL.

[Pollyanna]

Thanks Al....you are such an encourager! That's what people have always said about me, but I think my husband's ALS is weakening MY "Encouragement Muscle"!!! :-D I feel better already!!

Oh, by the way. Some time ago someone asked about how to post a reply that would show our signature correctly. You answered, but at that time mine was fine. Now, when I try to include my "signature" it has all these little code words in it (such as "blue text", etc.) and does not display correctly. So I've quit including my signature and selected encouragement phrase...but I'd like to...can you tell me again how to make it work correctly? I've tried selecting the reply buttons on the left and the right sides, but they both display my message the same way....wrong!!
Thanks,
Pollyanna

[Al]

No problem. First you have to go to User CP at the top and click there. Then click edit signature and type in signature and click save at bottom. Then when you use left Reply just below the message box is a section with a couple of options. Click the box that says show signature. It should work all the time then. Just to be sure use the right side or pen and paper short reply and when your message is done click go advanced and make sure the use signature box is checked there. Should work. AL.

[Pollyanna]

Thanks Al. Forgot where I had posted this question, so just now found it. I'm doing everything you suggested, so hope it works. Thanks again...you ARE a SUPER Moderator!!!

[musicsmiles]

Hello,
My husband was diagnoised with the Bulbar onset of ALS. He has all the symptoms. He has trouble swallowing, slurred speech, drooling, and some difficulty breathing, especially when he is laying flat on his back. He has weakness in his hands and some in his arms, he has no weakness in his legs yet, thank god. Anyone else with these symptoms? I heard also, through reading and other people that people with this kind of onset has even shorter life span. I sure hope that their is some kind of mircle medicine before my husband is gone.

Musicsmiles

[Al]

Hi musicsmiles. Generally speaking, people with bulbar ALS do not last as long as people with limb onset. There are people on the forum that have had it for 5 or 6 years so do not lose hope. The breathing difficulties you describe are what I had when I needed the Bipap to help me breathe at night. I think I remember in a previous post that you are going to the clinic soon. If it is not soon call and tell them about your husband's breathing. That is very important.
AL.

[Marjorie R. Wilcox]

RIck had severe sleep apnea first.... then limb(leg) onset and deterioration of leg muscles. He has no slurred speech or trouble swallowing. He absolutely cannot sleep without his machine or he won't breathe. He staggers when he walks but has full strength everywhere else.

[hearts_and_thoughts]

With my sister, she had limb onset. She later developed bulbar symptoms before she passed on. It was the build up of carbon dioxide that took her peacefully in her sleep. God bless her soul...I miss that lady. She was strong, graceful and courageous.

However, my father and my brother both started with bulbar symptoms. I was only 4 when my father passed on and don't really know if he ever had total loss of use of limbs or not. So far, my brother still has his legs but has lost use of one arm and as of today, I have had to lift his 2nd arm up for him and it is nearly a total loss for him. He cannot breath without the bipap and oxygen and he panics if he is off for no more than a minute. His speech is inaudible and very slurred.