Just Questions

[Griswald 1]

My sister was bulbar onset diagnosed over a year ago.. For two years prior we thought she had had a slight stroke which was taking her speech till she started in with choking issues. She has been using a Bipap ever since diagnosis thus I assume that this meant her respiratory levels were low from the first diagnosis. At this point she has lost all speech, but is able to still use her limbs and is currently experiencing a rapid decline in stamina and breathing ability.

Has anyone died of ALS with "only" the bulbar onset and diaphram failing? Most of those I read about have lost their abilities to walk or use their arms or both before dying.

Also, has anyone had the radiation treatments to help eliminate the eccessive drooling that she is now experiencing? We have heard that the U of Kentucky ALS Clinic has had good results with this method versus the Botox injections, and it does not have to be repeated. She has already attempted the drug methods to no avail. She lives in Indiana and is being seen periodically by the U of Michigan ALS clinic.
I appreciate any help you can offer.

 

[tmasters]

Some PALS maintain use of their arms and legs all the way up to respiratory failure.

Does she have a PEG? With bulbar onset especially, not having a feeding tube can lead to not getting enough nutrition and even starvation.

Sorry I don't know about the drooling. Somebody here will know.

-Tom

 

[Katie C]

While Glen had some weakness in his hands and arms, he never lost use of them.

 

[BarryG]

Griswald, like Katie said, it is entirely possible to die of ALS without ever losing the use of arms or legs but the usual progression for a bulbar onset PALS is like what I have experienced, speech and swallowing problems first followed by a decline in breathing and limbs.

I had the radiation treatment to reduce drooling in the fall of 2008 and I think it helped initially although now I take glycopyrrolate three times a day through my peg tube to reduce saliva.

 

[Griswald 1]

Thanks so much for all of your replies. It is so hard to plan ahead when the path is so unknown. She has been on a PEG for going on 9 months. Apparently everything was in pretty bad shape from time she got diagnosed, as in the beginning she was told she may have had a very mild stroke...wrong. The outcome would have been the same so no real harm I guess. She just got a call from the ALS clinic in Ann Arbor and her insurance is refusing to pay for any of the radiation because it is an unproven treatment or something like that. I think the person she deals with up there is still attempting to get something worked out. We'll see. I just know that the drugs she has tried have done little to resolve her problem. Thanks again for your replies.