trfogey
Very helpful member
- Joined
- Jan 31, 2008
- Messages
- 2,043
- Reason
- PALS
- Diagnosis
- 07/2007
- Country
- US
- State
- NC
- City
- Raleigh
Andy,
You and your family just got lesson 1 about ALS and how rare a disease it really is. For most doctors who are not neurologists or intensively involved with caring for elderly patients, the first PALS they see may be the only one they see in their entire career. Given the quirky things that happen to us, each of us PALS is going to be an educational experience for a fairly sizeable group of health care professionals in our time -- everyone from our family doctor and dentist through all the nurses, aides, and orderlies that we'll run into during our hospital stays. It is truly scary to realize that a hospital might be the most dangerous place in the world for one of us to be, simply because standard emergency procedures don't always play well with ALS.
One thing I'd strongly recommend is finding out the pressure settings for your father's bipap. You will need to know them when he goes to the new ALS specialist anyway, so get them now while the January incident is fresh. Another common "mistake"that inexperienced pulmonologists and RTs make is starting ALS patients with settings that they are familiar with from dealing with COPD or sleep apnea patients.
You and your family just got lesson 1 about ALS and how rare a disease it really is. For most doctors who are not neurologists or intensively involved with caring for elderly patients, the first PALS they see may be the only one they see in their entire career. Given the quirky things that happen to us, each of us PALS is going to be an educational experience for a fairly sizeable group of health care professionals in our time -- everyone from our family doctor and dentist through all the nurses, aides, and orderlies that we'll run into during our hospital stays. It is truly scary to realize that a hospital might be the most dangerous place in the world for one of us to be, simply because standard emergency procedures don't always play well with ALS.
One thing I'd strongly recommend is finding out the pressure settings for your father's bipap. You will need to know them when he goes to the new ALS specialist anyway, so get them now while the January incident is fresh. Another common "mistake"that inexperienced pulmonologists and RTs make is starting ALS patients with settings that they are familiar with from dealing with COPD or sleep apnea patients.
