Question: Bulbar?

[pamwagg]

Is dementia more common in bulbar ALS? I worry about that with my friend, because his memory seems so bad, though what I've read about ALS is that it is not memory-related, not like Alzheimers at all...So maybe it's just my worry that makes his memory seem worse than before. Or maybe it is the stress of so many decisions to be made that is making him forgetful...What is the ALS dementia like, that is if it is more common in bulbar cases? My friend has always been very friendly and tolerant and accepting of people, an all around nicest guy you could meet...Could that change? So far it hasn't, he actually jokes about ALS with most of his friends (not with me) which kind of worries me in fact. But I'm very glad that he has a sense of humor and can enjoy himself. I just wish it were not at his own expense.

Also, does anyone know at what point, respiration-wise does a tracheostomy and vent become imperative if you are going to have one? I mean, at what % lung capacity? Is there a cut and dried cut-off point? Or only when breathing is simply too difficult for the patient? My friend has 37-40% capacity but seems to be progressing very rapidly in that area since he was diagnosed in August 06. He has a PEG, which he doesn't need to use, but they put it in due to his compromised respiration, which we were told they usually want to do before 50%. Otherwise, which is what makes a vent look so enticing, he is doing well, walking, talking (though garbled) etc. No noticeable weakness except bulbar. He thinks he can live like Stephen Hawkings if necessary, but when push comes to shove, I truly don't know...But if Medicare doesn't pay for the operation or a nursing home, then the whole thing is moot (he is not married and has no children or anyone to care for him 24/7) nor enough money to pay for either...unless Medicaid does in CT. We'd better look into it, I guess.

Sorry this was so long. I just have so many questions and though I have read a lot about ALS (several books and many booklets) there is only so much a book can tell you about living with or near someone who has it and who needs you...

Pam W

 

[DavidGL]

A few references to ALS and Dementia (maybe you've already seen this stuff?):

http://ci.columbia.edu/c1182/web/sect_5/c1182_s5_5.html

 

[gapeach]

pam,
I wondered about the lung issue, too. My husband has bulbar als and seems to be progressing very fast. He does not want to go on a vent and I wondered what percentage it is at when it can no longer sustain life.
gapeach- Susan

 

[Al]

Usually with an FVC of 50 to 60 % they suggest a vent or some means of mechanical ventilation. At 25 to 30% some sort of breathing failure can be expected. Depending on other factors a Bipap might be all that is needed rather than a vent and trach but the Pulmonologist or Respirologist is the one to decide that assuming that the patient wants it.

 

[pamwagg]

Yes, he is using BiPAP at night, though is having a devil of a time getting it adjust correctly. First, it "breathed" too fast and was impossible to use. Then it didn't have a humidifier, and so dried him out and couldn't be used longer than a hour. Now we are waiting for the home care company yet again, as the OUT breath isn't there anymore and so he has an inspiration but no expiration, which doesn't really help much. So far he sleeps some of the night on his back with the BiPAP and some of the night on his side without it . It has been a real pain.

We are assuming however that the day will come when even a BiPAP will not be assistance enough and a vent will become imperative if he wants to live. Argh! It is all moving so fast and he has so many decisions to make, which he just does not do well under pressure...and I encourage him but even that is tricky as he experiences that as yet more pressure and I don't want to upset him.

What to do? A lot of his friends encourage him to take as many trips as possible with them, virtually every free day he has, fatigue or no, to "make memories." I worry that he is not taking ANY time for practical matters aside from unavoidable doctors' appointments and such: he won't take time to use his new laptop, of which he is afraid, to get used to the text to speech program he wants to use when it becomes necessary (very soon), or even just to get used to a laptop computer and the new windows upgrade he isn't familiar with. (I wish I could help but I'm an Apple person, very willing but not too knowledgeable) He hasn't even loaded the new software! And there are other pressing things that need to be done or decided that are being ignored. I want him to go out and have as much fun and enjoyable times as he wants to have, god bless him. But I do worry that he won't be prepared for the reality of ALS when it finally dawns on him that he has it...Am I wrong?

Pam W

 

[pamwagg]

Sorry for talking so much. I'm just so anxious...

Pam W

 

[Al]

Hi Pam. No you are not wrong in feeling anxious for your friend. You being the practical one want to make sure he has things in place for when they are needed . He on the other hand is trying to put 10 or 20 years of life into a few months or with luck a year or two. Call his RT or Pulmonologist. They can adjust the Bipap. You shouldn't have to wait for the company. Also some people use the Bipap 24/7 for years and don't need to be trached and vented. It depends on the person. Can you load the software for him? Once it's in he may be more agreeable to trying it and confronting the other decisions. The lousy weather is coming soon so that may keep him in to do the things that need doing. AL.

 

[pamwagg]

Oh, Al, thanks for understanding. He is being so bullheaded and I worry so much. He complains mightily about the BiPAP and hardly uses it, yet is SO fatigued during the day...I tell him sleeping better at night might alleviate the fatigue, but he won't listen. I don't know how he thinks he willl adapt to an invasive vent's completely breathing for him if he can't even take the rhythm of a BiPAP's assistive breathing. But I've read that Bulbar pts often cannot tolerate BiPAP, is that so? Then what? I'd load the softward in a heartbeat, but I'm not sure how, on a PC...Is it simple?

 

[Al]

The Bipap can be a hard thing to get used to. Some people don't realize they are a bit claustrophobic until they slap on the mask. Is this his problem? A mg or 2 of Ativan or some other anti anxiety med might help if that is the problem. It just might take the edge off and help him cope with everything in general. Loading the software is not too hard for someone with a bit of computing experience. Usually it is just a matter of putting in the disc and following the prompts on the screen. Have you got kids that use the computer. They're usually pretty good at that stuff. AL.

 

[pamwagg]

Hi Al,

RT came to reset BiPAP machine, hopefully he will use it now...we'll see. I don't think it's anxiety...He is rarely anxious, just awfully tired and overwhelmed by decisions to be made. Otherwise he's in a very good mood in general. Rather enjoys being doted on, actually.

I'm quite good at apple computers; just never used a PC or windows...Anything really critical I should know -- that I shouldn't do or should? Otherwise I may just go ahead and load the software myself. Thanks for the encouragement.

Pam

 

[Al]

I don't have any experience with an Apple but my brother uses both Apple and PC with Windows and doesn't seem to have any problems. I would think the differences would be no major challenges.