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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
 
Well, you might find some info in past posts under "traveling to higher altitude" (2009) while you are waiting to hear back from the ALS Clinic. Sorry don't know how to do a direct hyperlink, you can find it under search. I have not read that thread so can't tell you for sure if you will find what you are looking for. Good luck!
 
Tahoe is at 6200 feet elevation. At that altitude the air pressure is about 80% of what it is at sea level. I don't know how this calculates to how much O2 to bring, sorry.

I recommend you purchase a pulse oximeter on line, to monitor her blood O2 level. These can be had for under $100, are not much bigger than a finger, and can be worn around the neck like a necklace.

I'm a geek, a do-it-yourself-er, and a control freak so I always found out how to adjust my bipap machine to comfort. But that's just me. I don't recommend changing it unless you got into trouble and she was very uncomfortable with the regular settings. More like an ace up your sleeve.

Cabin pressure on a commercial jet is just a little less than Tahoe. I notice the difference, and so does my pulse oximeter. It is good to be prepared but I wouldn't be too afraid. Sounds like a wonderful trip!

The wheelchair is a good idea. You can probably get a loaner from ALSA.

-Tom
 
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