bi-pap weakness and red wine

[beverly rees]

My husband was diagnosed with ALS on October 2008. He has tried several times to use the bi-pap machine and immediately gets weaker. He has had a sleep study test and several therapists adjust the machine. Just wondering if anyone has any similar experience.

His weakness is in his hands and arms. He has a hard time lifting his arms and has found that when he has a glass of red wine his arms are better for about an hour afterwards. Thanks for any help. Bev

 

[rose]

Bev,

From my own experience, the sleep study doctor had my bi-pap set at a higher level than the RT who works with the ALS and neuromuscular patients. Has your husband only had the settings adjusted by those associated with the sleep clinic, or has a RT with neuromuscular specialty worked with him as well?

The bi-pap increases my energy, and also the volume of my voice is louder right after use.

That's weird about the rw, I have a couple of glasses every night, will have to pay attention to how I feel afterward. 8)

 

[hopeful warrior]

Note to self- DRINK RED WINE!

 

[beverly rees]

Hi Rose & Hopeful Warrior,
Actually we had two differrent rt's adjust the bi-pap and they were not affiliated with the sleep study. We were very motivated to make this work but since he immediately feels weakness does not seem like it is going to work for him.

We are told our neurologist at Stanford that the red wine seems to help. He said he might just have to invest in a winery- maybe we will too. Anyhow, nothing about this disease is that predictable and what works for one person does not work for another. Our friend that has had this disease for four years gets weaker with wine and credits the bi-pap as the one thing that has increased her energy.

 

[Al]

I always tell everyone that the red wine is the only thing keeping me alive.

AL.

 

[beverly rees]

Hi Al,
Maybe we should invest in a winery and forget rilutek.

 

[irismarie]

So our communal village must be in California or the South of France or Italy. Decisions, decisions...

 

[beverly rees]

I vote for Italy.

 

[joelc]

I vote for Australia. My favorites come from there and right now they have the best weather! LOL

 

[beverly rees]

Australia would work for me too.

 

[Al]

Trouble with Australia lately is if it's not burning, it's flooding.

AL.

 

[beverly rees]

Well, that might give us something else to think about other than this rotten disease.

 

[peter57]

Where i live we dont get flooding and we havent had a major bushfire since 1983, touch wood.

Any way some nice wineries are app 50-60 km away, If we had a fire we could always go there, Grapes dont burn, especially when they are bottled :wink:

cheers
Peter

 

[hopeful warrior]

I just vote for the wine! I'm not picky.

 

[Blubear]

Hi Guys, My dad will be happy to know about the wine as he is a BIG wine drinker since he has his wine cellar and all! ***Question, my dad got his bi-pap after his sleep study, which was before his diagnosed of ALS. Is there a real difference for someone with ALS as oppose to someone whom they thought to just have sleep apnea? Is there anything special or different that he should do? AHHH da questions!
Hugs All,
Kari