When I was diagnosed in 2020, my doctor told me three things:Â
Don’t lose weight.
Travel Â
I don’t remember because I was still reeling from the fact that he just told me I have ALS.
I think I now weigh more than ever and Kristy and I took the travel part seriously.Â
Since diagnosis we traveled to:Â
California from San Francisco to San Diego Â
The Kentucky Bourbon Trail twice Â
Ashville, North Carolina Â
Santa Fe, New Mexico Â
Disney World Â
Chicago Â
New York Â
Orange Beach three times Â
A 30 day road trip which included:Â
Texas, Utah, Colorado, Wyoming, Montana, North Dakota, South Dakota, MissouriÂ
A Caribbean cruise Â
And for those who may be curious how we afford this on disability income, there are two Ways. Â
We use our credit card points for hotels and flights.Â
75 % of our trips are gifted to us. Â
And then I got trached and thought our days of travel were over. We actually cancelled a cruise soon after my trach. Â
The reason for travel for us was less about seeing places (though we love that), but travel allows us to break up the monotony of life. It gives Kristy and I a chance to reconnect and when we travel with our kids, it gives our family an opportunity to experience reprieve. Â Â
The day-to-day grind of this life with ALS is a difficult one. Travel gives us a bit of a break from our lives in a way. It gives us a chance to slow down and breathe and reconnect as a couple and a family. Traveling has proven to be one of the best ways for Kristy and me to keep our love alive as we are not distracted by the day-to-day grind and when we travel with the kids, everything slows down and we are able to focus on one another without distraction.
I am not naïve to think that our lives and travel are different from other large families. However, with ALS I also know that our days are numbered, and these breaks offer us a chance to reconnect and reboot.Â
For this reason, we are getting back to traveling. Now that I feel stable with my trach we are going to once again try to hit the road and skies again. Â
Love.