Which is the fastest in progressing

[john.rt]

Which is the fastest in progressing bulbar type or limp type or is it different from one to another?please help

 

[joelc]

I don't think it matters. There is a lot of speculation but I am not aware of any clinical statistics. No matter what type of onset a person has it varies between each person.

 

[Al]

I've read that bulbar is 18 to 24 months while limb onset is 2 to 5 years. Those are general statistics. We have bulbar members here with 6 years in and limb onset members with 15 years so no one knows for sure. Don't worry about the numbers. Worry about the quality. Live one day at a time.

AL.

 

[john.rt]

thanks guyes

 

[Jennifer51]

In the UK it is generally accepted that Bulbar is more aggressive...unfortunately, as that is what I have. I was doing ok in the first year, but the last 5 months I have had quite a marked decline,,,now I am 17 months in...waiting and hoping to plateau. can hardly walk even with my tripod, just make it to the loo and back, peg feeding, cant talk, waiting to hear if I need oxygen and arms are now going. Need help to do everything. At christmas I could still talk, though oddly and could still walk unaided.

 

[rachelg]

My husband Mark had his diagnosising confirmed last week. Bulbar. He was told 4/5 years.

Mark has decided to completely ignore it - he wants to concentrate on living. He reckons statistics are there to be beaten.

 

[Jennifer51]

Just goes to show...stastistics ..huh. I was told 6 months to 3 years but average 18 months...and the other stastistic is that bulbar is far less common..well almost everyone I have been in touch with lately is bulbar...it seems that someone has these figures wrong somewhere. We are not stastistics but living fighting people. Power to us.

 

[BarryG]

My docs were very reluctant to tell me anything about life expectancy but I too have heard from other sources that bulbar is faster progressing. I was diagnosed in Jan 08 and am now having real trouble eating anything by mouth. Up until a couple of months ago I had no limb problems but now my right hand/arm and left foot/leg are becoming hard for me to use. I can still walk but not very far, I am worried about finishing the ALS walk in June. Jennifer, you're right, why does it seem that bulbar onset is more common than what the stats say? Are we more vocal (even though we can't talk) and therefore more visible? Maybe there always were more bulbar types but before the modern technologies of email and the internet it was more difficult for us to have a voice. Out of sight (or sound) out of mind, so to speak.

Like the man said, there a three kinds of lies: Lies, Damn Lies, and Statistics. I don't believe the stats.

 

[hopingforcure]

my theory is that bulbar is just easier to diagnosed. and many people with limb onset never are diagnosed. or are incorrectly diagnosed. Just a theory. I believe that respitory function has much more to do with life span than doest the type of onset that you have.. But as JoelC has proved we can all live longer lives than we may have expected.

 

[rick/Wpg]

Jennifer and Barry...you are right about the unreliable stats far as I am concerned...both about total ALS cases and the percentage of Bulbar...as they say ' figures lie and liars figure'
I think you are absolutely right Hoping...diagnosed is the key to a lot of the confusion about all the stats.
Just thinking about your walk Barry....you might want to find a transfer wheelchair you could use that day just to save yourself a bit. I was diagnosed last Feb and at our first walk last May was just using a cane....Joan talked me into using a transfer chair (after much whining on my part!)just for the walk itself and it was very wise...saved my strength for the rest of the day This year it was power chair all the way for me!
Good luck on your walk...have a blast!

 

[BarryG]

Thanks Rick, I think I'll ask the ALS society to bring one as a backup for me. I might start out on my feet and have my son ready to push me if I get tired.

 

[BethU]

Statistics

I really don't think anybody's keeping track at all. Somebody pulled some figures out of the hat 50 years ago, and they just keep getting quoted.

I think bulbar gets a bad rap because it has typically had an older onset, and thus appeared in people with other degenerative health issues in addition to plain vanilla old age.

But bulbar really seems to be hitting younger people a lot now, and as Joel points out, if we use ALL the mechanical devices available, there is no reason bulbar-onset can't live as long as limb-onset and no reason limb-onset can't go on much longer than the doctors quote.

It's an uphill battle for all of us, but we've got tools that earlier generations of PALS did not, so we can make our own statistics.