Don't really expect much response to this post since so few people (thankfully) have ALS but DH does so thought it worth an inquiry.We are most-timers now since our NJ home with stairs does not work for him now. And we fled Nj for FL in Dec. after our house was damaged by Sandy. Have been in FL since.Traded our fiver for a MH in Jan. for push button ease and also so I can drive if needed. I took driving lessons with RV Driving School (great!) and my driving is. . .ahem. . .improving with practice.DH is still able to walk around the MH and campsite but uses a scooter for sightseeing.We want to go on our Trip Of A Lifetime this summer from FL to Grand Canyon and beyond if we can. Maybe even Alaska. The brass ring. Doctors said GO! So we will give our best.So my question is do others venture far and yon with such serious illnesses and how does it go?We did get SkyMed just in case.Any thoughts or insight would be greatly appreciated.Kim

Forgot to say I am almost 60 (yikes!) and in good health and he is 57.

My wife has severe Lyme and can barel walk or climb stairs. We traveled 10000 miles last year. She loves it and I think it helps her to not be depressed. She is in pain anyway and can get her meds a month in advance or prescriptions filled at Rite Aid

Go for it! None of us are promised tomorrow and you sound like you both enjoy the lifestyle.

Note stair lifts are not too expensive, we have had one for years. No need to forsake your stick house due to stairs IMHO.Wife is very handicapped. I have been given two years at the outside until my cancer kills me. We are planning to see Jasper, Banff, Lake Louise, and then head east this year. We have an NRA contract where they will fly my son out so he can drive our RV, my wife, and our dog home if I die on the road.We refuse to sit in sorrow in the corner and wait to die. Heck even healthy folk die on the road, so just go for it. The big advantage to an RV is you can stop nearly anywhere, stay a few extra days if needbe in a CG, and if you do not make reservations (we do not) you can travel as few miles per day as works for you.Not sure age makes a difference, but I am 70.

It's really good to have such an understanding doctor! I don't have a progressive disease but I injured my spine years ago and use a wheelchair. Traveling is so much better than being stuck in a house. Please check out my blog. I give a short description of each place that we visit including information about accessibility.I hope that you have a wonderful trip!

Traveling with ALS? Kinda long | Good Sam Community

water_witch
Explorer
Apr 13, 2013
Oh geez forgot to mention Tony and Karen as inspirations too. Forgive my forgetfulness and multiple posts.Must be beach brain from wintering in FL.
water_witch
Explorer
Apr 13, 2013
Forgot to add that you too Passin Thru and your wife are an inspiration :)
water_witch
Explorer
Apr 13, 2013
Thank you Chuck. You and your wife are an inspiration! And thanks to others for your encouraging words :) I was wondering in the back of my mind as we planned this trip: Are we crazy??

But I guess what you are all saying-to quote Neal Young- is it's better to burn out than it is to rust.

So off we will go for as long as we can. Happy travels and thanks again for the encouragement. I needed that!
emzee
Explorer
Apr 13, 2013
you sound as though you have handled thing very well. Take your time and go for it!! Best of luck to you both!!
traveylin
Explorer
Apr 13, 2013
Go west...The long views and the large windshield will brings great times for the two of you. Take your time spend a week at each location. Read books in the great outdoors. My wife is limited physically and we live best in the national parks and forests
tonyandkaren
Explorer
Apr 13, 2013
It's really good to have such an understanding doctor! I don't have a progressive disease but I injured my spine years ago and use a wheelchair. Traveling is so much better than being stuck in a house. Please check out my blog. I give a short description of each place that we visit including information about accessibility.

I hope that you have a wonderful trip!
Chuck_Gail
Explorer
Apr 13, 2013
Note stair lifts are not too expensive, we have had one for years. No need to forsake your stick house due to stairs IMHO.

Wife is very handicapped. I have been given two years at the outside until my cancer kills me. We are planning to see Jasper, Banff, Lake Louise, and then head east this year. We have an NRA contract where they will fly my son out so he can drive our RV, my wife, and our dog home if I die on the road.

We refuse to sit in sorrow in the corner and wait to die. Heck even healthy folk die on the road, so just go for it. The big advantage to an RV is you can stop nearly anywhere, stay a few extra days if needbe in a CG, and if you do not make reservations (we do not) you can travel as few miles per day as works for you.

Not sure age makes a difference, but I am 70.
Retired_Wileys
Explorer
Apr 13, 2013
Go for it! None of us are promised tomorrow and you sound like you both enjoy the lifestyle.
Passin_Thru
Explorer
Apr 13, 2013
My wife has severe Lyme and can barel walk or climb stairs. We traveled 10000 miles last year. She loves it and I think it helps her to not be depressed. She is in pain anyway and can get her meds a month in advance or prescriptions filled at Rite Aid
water_witch
Explorer
Apr 13, 2013
Forgot to say I am almost 60 (yikes!) and in good health and he is 57.

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