We did it! Our family did our first major road trip. We drove over 2000 miles in 7 days. Our main destination was Colorado Springs to see one of our Air Force brothers (L. Fischer). We had an amazing time checking out the Air Force Academy and Garden of the Gods. We also went to a great little town and because Fisch did all the driving while in Colorado, which by the way was so welcomed, I was able to drink a margarita which was the size of my face! From Colorado Springs we headed to Albuquerque, NM for the night. The significance of ABQ was that I spent 2 yrs there at the University of New Mexico and on March 5, 1990 at the base of the Sandia Mountains, the He proposed. He proposed one day after my 20th birthday and left a few days later for his first Duty Station,Guam.
We left ABQ and headed to White Sands, NM to play for a bit before stopping for the night in El Paso. By stopping in El Paso we were able to spend the evening with more family from our military days. Actually it was M & S who came to see us last year. We loved seeing them but wished it could have been a longer visit.
The last leg of the trip was from El Paso back to Austin. It was a lot of driving but we did it and we are still talking to each other. It was another opportunity to tell ALS to suckit!
Now, for the behind the scenes experience:
Handicapped traveling takes more planning then non-handicapped travels. Its more than getting a handicap room.
For starters, since we were heading to higher elevation we needed to make sure the He would not have any breathing problems. While giving just oxygen to ALS peeps is not advised we did have some tanks waiting for us along with the necessary piece to feed the oxygen into the He’s ventilator. We also invested in a pulse-ox to keep on top of his needs. We Amazon’d a rollator to the hotel as we waited too late to borrow one from the ALS loner closet in Colorado. We did this because we took our truck so Frank the Tank and Lou the mobility dog could come with. Which meant not a lot of extra room in the back of the truck and cab space was very limited. Lou the dog takes up a lot of space!!
When packing, I had to make sure Lou had all the things he needed as well as all of the equipment the Big He would need plus backup equipment, plus backup batteries for the equipment. There was also the extra dressing and tape for cleaning the He’s button and tubing for any supplemental calories we may need to give via the button.
Since the Big He no longer drives that was my job. The Little He rode shot-gun and the Big He and Lou had the back seat. There was a ventilator set up in the back for the Big He just in case. Lou the dog had some toys in the back along with the very expensive equipment.
I can tell you that not all hotel rooms that say they are “handicap accessible” are REALLY accessible. While ADA requires grab bars, wider doors, non-slip flooring, roll-in showers with an adjustable shower head, the layout of these things are not always in a way that makes things easy. But you know what, you adapt. You make things work. You provide a little constructive criticism to the on-call manager so they understand where improvement could be made.
At the end of the trip we were all exhausted but had a great time. Seeing new things together as a family was amazing and definitely provided us with wonderful memoires. Visiting friends, no not friends, family only added to the amazing time we had. These are people that I am not sure if they truly know how special they are to the Big He and I.
I can tell you that we learned we CAN travel with ALS it just takes a little more effort. We know that as the Big He progresses it will take even more effort and possibly another person to travel with us for extra help. But we can do it. The three of us were made to get out of our comfort zone but that’s how we stretch as people right? Finally, I personally learned that I would make a crappy truck driver but with stops I can be the designated driver, unless Fischer is with us, than he can drive.
All my love,
How is the Big He doing? As he likes, to say, he’s good but progressing. His ability to walk unassisted is coming to an end. He definitely needs the rollator if not in the wheelchair. He is also finding it hard to put socks and shoes on and needs help sometimes. Turning over in bed is becoming harder for him and we both know soon he will need help with that. Getting ready in the morning is starting to exhaust him which again, means soon he will be needing assistance with that as well. We are now using his button (feeding tube) at night to give him some supplemental calories. Finally, one of the harder things ALS takes is a person’s voice. We are seeing the end of the Big He’s voice. He has been practicing with his communication device and been busy trying to record phrases while he can.
ALS is shi!!y disease. We continue to pray that a cure is found and found soon. As they say in this community, ALS is not incurable, it is underfunded.