breathing trouble SO SOON? help.

[Mediasmart]

>Burma Shave... I remember the signs [/QQUOTE

Slow down pa
Sakes alive
You missed sign
Four and five

 

[pearshoot]

spring has sprung....where last....years careless.... drivers is...Burma shave

 

[Mediasmart]

spring has sprung....where last....years careless.... drivers is...Burma shave

and while we are on the subject of Burma Shave
Opus One Media: Spring has sprung, the grass has riz, where last year's careless drivers is...Burma Shave

 

[dalvin]

Thought I'd share this for those with breathing problems, like me.
Saw the respiratory techs at the va recently. They used the type of mouth piece that you can get a good seal with. During the initial test my fvc was only at 25. Then they gave me a breathing treatment (nebulize), my fvc increased to 35. If you can get your doc to prescribe one it's well worth any minor side effects, mainly being jittery and increased irritability. My theory is that by opening up the air ways my diaphragm doesn't have to work as hard

 

[travelbugg]

Hi Nancy,

My husband is one of those PALS with very rare respiratory onset ALS, yet he did not get diagnosed correctly until earlier this year. He started with breathing problems in spring of 2011 (we can remember him huffing and puffing on the stairs and saying he was out of shape.) All of his problems have been misdiagnosed as related to either heart or diabetes, when the ALS specialist says it was clearly ALS.

Yet after all this time with no treatment, my husband's FVC is still 63%. He just started using a BIPAP. So please don't panic, even with the supposedly poor prognosis of respiratory-onset ALS, my husband is doing relatively well, is still completely ambulatory, dresses himself with occasional help. He also has FTD, and that's what is causing him the most grief. My husband has forgotten so much, and is often bewildered by what is going on around him.

I agree with everyone else however, you need an ALS clinic pronto. They are just a fabulous source of help.

 

[pearshoot]

my thinking runs way ahead of my typing....will try again....we know how much, you love that gal, but use both hands, for driving pal,,,Burma shave

 

[BlueEyesOhio7]

Awe, pearshoot how fun! My husband knows ALL the commercials that were on TV.

Lynne

 

[NeedCourage]

HALLELUJAH!
With gratitude for all your encouragements ... I just got off the phone (after many wrong turns and frustrating calls to various places) and have an appt for my Pals on THIS THURSDAY at the ALS multidisciplinary CLINIC in Pittsburgh's Allegheny General Hospital. They had a cancellation!
Will be reporting in soon with some REAL information. Breathing/appetite/energy continue to decline. But at this moment I'm H A P P Y to be professionals who know about the beast. Thanks again for your help.
Love,
Nancy

 

[Nikki J]

That is great news! Hope you get lots of answers. Start now ( if you have not) listing your questions, making a concise timeline of symptoms etc. Good luck

 

[Schmidhogan]

When I was first diagnosed in October I came in at 80per cent. I tried a swan song SCUBA dive in December and could draw the air through the tank. Now I'm less than 60 per cent and on bipap when I want to lie down. Breathing issues were front and center early on in my disease progression. Alex

 

[Schmidhogan]

I meant to say I could NOT draw air from the tank.