Bulbar ALS and pneumonia?

[Will26]

Hello all,

I've read from a lot of different sources that the shorter life expectancy (18 months?) for bulbar ALS patients is usually attributed to pneumonia due to aspirating liquids. My question is, if you acquire a PEG *before* you risk getting pneumonia through accidental aspiration, wouldn't this extend your survival time to the 3-5 years as seen in the general ALS population? Almost everywhere, it seems to say that Bulbar ALS is fast-spreading, but does it actually SPREAD faster, or is it just that bulbar patients are dying sooner after diagnosis because of their increased risk of getting pneumonia due to aspiration? I've heard that a lot of patients are reluctant to get a PEG until they absolutely can't go on without one, but if all bulbar patients got PEGs way before aspiration was even a risk factor, would this extend survival time to what is generally seen in limb-onset patients?

Will

 

[joelc]

I believe that a PEG, early on, can and does extend a PALS life span. I also believe that being open to and getting a trache and vent will extend a PALS life span to 20 years and more.

 

[Jennifer51]

I believe that a PEG, early on, can and does extend a PALS life span. I also believe that being open to and getting a trache and vent will extend a PALS life span to 20 years and more.

I have bulbar and would like the 20 years please. When I was DX the neuro said THINK 3 years but no more than 5...how I hate him..but then I have to try to prove him wrong. I am just coming up to one year, cant talk at all now, mobility is going downhill fast, only just able to walk around indoors on one level, cant fully dress myself or turn over in bed, if I fall down I am there to stay, without assistance. I was hoping for much slower progression..maybe I will plateau soon. I have not had any intervention of any sort to date.

 

[patricia1]

I have bulbar and am here 10 years. I am more likely to die from a fall.

So be careful and if need be get a peg


pat

 

[BethU]

Will ... I think those life-expectancy numbers are mostly urban legends (even though doctors may quote them). There may have been data way back when to support them, but the 18-month for bulbar, especially, seems simply wrong. Pat has already shared that she's in her 10th year with bulbar; I'm starting my fourth year with bulbar; Jennifer is at one year.

I'm sure (this is an opinion/guess, as I have no med background) that it is aspiration pneumonia that makes doctors say "it's faster" with bulbar. Every case is different, and some bulbar progresses faster, some slower, just like limb onset. With limb-onset, it takes a while to reach the bulbar area, where the risk of pneumonia and choking are greatest.

Most neuros suggest getting the PEG way before it's needed, because the patient is stronger. Once breathing is compromised, even simple quick little surgeries like a PEG implant are riskier.

It takes so darn long to diagnosed ALS that I'd bet that most bulbar-onset PALS have swallowing problems as well as speech problems by the time they're diagnosed, so the risk of aspiration is already there. But I think you're right ... preventing aspiration pneumonia will no doubt help to lengthen survival time, and doing it "before need" is a very good idea.

Take care.

 

[mndireland]

Hi Wil, my mom has bulbar 16months since diagnosed, I know she has it maybe a year previous to this. Has refused peg, trach etc. We have also had a really cold winter, and she didnt get so much as a head cold. Doc said about phneumonia from the fluids, mum has been choking for about a year now on fluids, still refuses to use a thickener as she doesnt like it, and is too late for peg, even though she refuses it. Docs couldnt believe her lungs are doing so well. Her fvc is only in late teens now, we use bipap all night and about 8hrs a day sometimes. The docs say she is defying all the odds on this disease. She can still talk, slurred. She can barely walk, takes a few attempts for a few steps, her hands are almost useless, but her fighting spirit is as big as ever most days. When she chokes on something, porridge etc, she wont stop eating it, as she says then its winning, she continues to eat. Doctors said there is very little risk of choking to death, and so she has learned to relax during the choking episodes, and takes them as an everyday thing! Her strength is unbelievable, and I am so proud and in awe of her......

You will determine how long you can survice this, not statistics! Keep fighting the fight:-D

 

[Markbreton]

My wife, Tammy has Bulbar ALS, 4 years now. She was told 3 years. She is going in this week for a trach. She is not in need of it just yet but he Dr. want to get it done while she is still strong and it does not become an emergency. She has had a PEG for 1.5 years now.
Mark

 

[Al]

Tell Tammy good luck from us all Mark.

AL.

 

[jimmybob]

Once swallowing becomes difficul, the risk of respiratory infection increases. Doctors will always recommend treatment/equipment to reduce risk; "do no harm". Back in feb 08 i took the barium swallowing test at the VA. In march 08 i had a PEG tube inserted, and didn't use it for 10 months. 4 weeks ago it fell out, and i'm still eating/drinking whatever i want. No, i did not have the PEG reinserted.

Every ALS patient will progress at different rates and in different parts of the body. Every situation should dealt with weighing the patient's needs/desires vs medical advice.

 

[BarryG]

Mark Twain said "There are three kinds of lies: Lies, Damn Lies and Statistics

I was diagnosed with Bulbar ALS about 1 year ago after experiencing increasingly slurred speech for about 6 months. I had a PEG tube put in about 2 weeks ago and use it at least twice a day with formula to augment my diet. As I have always been a skinny guy I really need the extra protien and calories to stop losing and hopefully start gaining weight. I think that probably one of the most valuable things that PALS can do is to maintain good nutrition. With the PEG I can get my nutrition and hydration without as much trouble as I have by mouth. So far, so good.

I'll be damned if I'll be part of someone's statistics!

 

[brooksea]

Will,

Preventive measures can extend pALS' lives of course.

Would just like to piont out, my husband has Bulbar/Limb onset with obvious swallowing symptoms beginning in 12/2005.

He's still eats and has FVC of 97%. His speech is very difficult to understand if you don't know him and sometimes I don't understand him. He's still walking.

So - he's had Bulbar ALS for a little over 3 years. No PEG, just uses BiPap as was recommended, even though he doesn't really "need" it yet. The PEG may be around the corner if he doesn't gain some weight back. But 3 years is pretty d@#m good! We'll take it!