Traveling to high altitude

[Honey2468]

Hello and thank you in advanced for any help!

My mother is newly diagnosed with bulbar -onset ALS. Otherwise is generally good health so we are fully embracing this time. We are traveling together next month and will be at very high altitudes.
I’m curious if anyone has experience with traveling to high altitude locations and how you or your pALS handled it? We are pretty much at sea level where we live now FYI.

 

[Nikki J]

How is her breathing? Did they test it in clinic? How high is very high?

 

[Doing My Best]

My husband and I spent a few days in the Rockies at super high altitudes about 6 months after diagnosis, when he was using a cough machine but not a bipap. We cleared it with his neurologist and respiratory therapist first, and they weren't concerned. It might give you the most peace of mind to get their opinion. Steve had no issues at all.

I should note he was limb onset and had few bulbar issues at the beginning.

 

[swalker]

I live in the rockes at about 8,500 feet above sea level. We often travel over passes that are much higher (up to 12,000 ft) and I regularly take wheelchair rides and ski at elevations up to 11,000 ft.

I find two main issues. The first is staying hydrated. Different folks will handle this different ways. I have trouble drinking thin liquids (water), so search out things that are a bit more viscous.

The second issue is that I have trouble keeping my oxygen saturation high enough. I monitor my oxygen saturation throughout the day with a pulse ox (I have 2). I have also had overnight pulse ox studies done that confirm I have trouble keeping my numbers where they need to be.

I use a two-pronged approach to handling the pulse ox issues. First, I use a bipap whenever I am not sitting up. Second, I use supplemental oxygen provided by an oxygen concentrator. Note that use of supplemental oxygen is typically not appropriate for PALS. I only use it based on the advice of and with the supervision of a very experiened pulmonologist.

Other things to consider are more mundane. There is less atmosphere, so solar radiation is more intense. I wear a hat, use sunscreen, and wear sunglasses when outside.

Also, the weather can be quite variable. I always have a jacket with me and typially wear at least a light down jacket every day during the summer. I also have rain gear in the pack on my wheelchair. I also typially wear sun gloves to avoid getting my hands sunburned on wheelhair rides and carry heavier gloves in my wheelchair pack.

If you have specific questions about visiting at high alititude, please post them. I would be glad to help answer them.

Steve

 

[Honey2468]

Thank you all and thank you SWalker for your extensive note!!!

We will be in Switzerland and plan to take a train ride to see the Matterhorn so similar to the Rockies I believe. Her neurologist okayed this but good idea to check with the RT as well. I will do so.
Based on our day to day activities I am feeling very confident about this trip! Just purchased the outlet adapter for her IVAPS so she can use it while sleeping while there.
I have mini-packets of thickener to add to water/other beverages so we should be good on the hydration front as well