DawneO
Member
- Joined
- Feb 7, 2013
- Messages
- 13
- Reason
- CALS
- Diagnosis
- 01/2013
- Country
- US
- State
- NY
- City
- Scotia
I am a caregiver with a best friend who has bulbar ALS. I need help so she can travel to a higher elevation to see a grand-baby's birth! K has support of CPAP at night (yes, I know it should be BiPap but I can't write the medical order to change it- I am working on it) we can use supplemental oxygen as needed ( before the CPAP she was on 2L NC at night.)
K has been a smoker for 40 years, so we would need to stick with low amounts of O2. We are taking about travel from NY state to Tahoe in CA. Vital capacity on PFTs is currently 78%.
Does anyone know about atmospheric testing that can anticipate how much oxygen she might need when traveling so I can anticipate?
She is traveling via RV, so would have time to acclimate while traveling- Does anyone know what the time frame would be to allow for that acclimation to occur?
Although K has no mobility issues now, is a wheelchair something we need to consider to manage the fatigue from the change in altitude?
Has anyone done a trip like this who would be willing to share any tips with me?
I have reached out to the ALS clinic, no answers yet.
I have reached out to the O2 vendor, no answers yet.
Now I am reaching out to the people who live with ALS, because I get the best answers form you!
Dawne
K has been a smoker for 40 years, so we would need to stick with low amounts of O2. We are taking about travel from NY state to Tahoe in CA. Vital capacity on PFTs is currently 78%.
Does anyone know about atmospheric testing that can anticipate how much oxygen she might need when traveling so I can anticipate?
She is traveling via RV, so would have time to acclimate while traveling- Does anyone know what the time frame would be to allow for that acclimation to occur?
Although K has no mobility issues now, is a wheelchair something we need to consider to manage the fatigue from the change in altitude?
Has anyone done a trip like this who would be willing to share any tips with me?
I have reached out to the ALS clinic, no answers yet.
I have reached out to the O2 vendor, no answers yet.
Now I am reaching out to the people who live with ALS, because I get the best answers form you!
Dawne