Hi Linda -
I, too, live in suburban Chicago, although far from you. PLEASE go to an ALS clinic. The first thing I would do is call the Les Turner ALS Association - 847-679-3311. They have a home care team that will come and talk to you about your needs - and continue to follow up with you, no matter who your health care provider is. They have a huge number of resources to help you, an equipment pool, grants for equipment, respite grants, and so much more. My experience is that they are THE BEST - and I have consulted in health care since 1981, all around the country.
They are associated with The ALS Clinic at Northwestern in Chicago. That clinic has a premiere pulmonologist dedicated to the clinic, and also board certified in sleep medicine (among other certifications). She is dynamic, encouraging and thoroughly knowledgable and committed. We got our bi-pap there on our first clinic visit - standard if your forced vital capicity is in the vicinity of 50%.
I could go on and on - but suffice it to say that bipap (and early nutrition intervention) are the ONLY two things that have added time to the lives of PALS, and they add quality as well.
Don't fool around with CPAP - I question the guy's knowledge who told you about that.
Please Private Message me - and I will tell you so much more - I will even give you my phone number. We have been to three ALS clinics, all were knowledgable and competent - but the set-up we are in now blows them all away.
Don't waste any more time - Check out the Les Turner ALS Foundation at
www.lesturnerals.org.
BTW - I have nothing to gain - just the CALS of a patient there - and the help we have gotten from them is life-changing.
Beth