Traveling with ALS? Kinda long

Thanks for your kind thoughts about my husband. Rving gave him life after his diagnosis with this terrible disease that he could have never had in a different lifestyle. He loved it and died here, in Florida for the winter in his RV, doing what he loved the most.

I simply cannot imagine how we would have navigated the past eighteen months, post diagnosis, without RVing. It made his life full for the time we had left and we were very blessed to have such wonderful travel together.

Go RVing!!!

Kim, please accept my condolences. You have a lot of strength to go through all this with your husband. My prayers for you and your family.

I am so happy to hear you had that beautiful trip, just wonderful!!!

My son-in-law is my daughter's only caregiver as they live across the country from us. What makes ALS so terrible is that it does not affect the mind at all and you slowly watch your muscles just waste away and you slowly lose the ability to walk, write, talk...and finally breathe. She was still working and managing a sports arena office staff up until last fall. I think that's what kept her going so long.

The motorhome would have been so perfect for them; I only wish I could have just bought it for them. Right now, they're looking at another winter storm (in March!) with a possible 'nother 7" of snow.

I'm sorry to hear of your husband's passing but am so glad you both got to travel as and where you wanted. We need goals in our lives and he had his. Isn't this country beautiful??

Wow, disagnosed in 2003? A nightmare, right?? I am very sorry for you and your daughter for having this horrible, HORRIBLE disease. my DH was diagnosed 9/4/12 and he passed away a week ago last Friday. He's free! PM if you want to talk. I'm really, really good with him being free.

We had some really great travel before he left :) My mourning was during his illness. Not now. I celebrate his life now!

My daughter is in the last stages of ALS (she's 50) and they live in NY state. I called my SIL and asked if he would be interested in hitting the road for the warm states this winter because I had a friend that had a beautiful MH with wheelchair lift that he would sell for $110,000. My SIL would have closed their house and hit the road in a heartbeat but my daughter, usually brave and adventurous, felt she didn't want to get far from "her" hospital. I do so wish they had ventured forth. I wish I had read this thread before she said "no" to encourage them. ALS is a horrible disease. She was first diagnosed in 2003.

I had two younger brothers pass a few years ago after they became afflicted with ALS, what a cruel disease. One lasted about a year after the ALS diagnosis, his brother who passed away about five years later lasted about the same amount of time. So it's of utmost importance that the afflicted person gets to see and do things while they, and you, can. Glad you and your DH were able to spend time together visiting those places, keep him going on enjoyable visits as long as you can. Especially nearby places that hold good memories of past years. I remember my brother was really happy when we went up to one of our favorite places to visit when we were kids, he knew that time was running out and it was really important to squeeze in good memories while he was still mobile. He and I communicated by his responding to me by writing notes in a tablet, still have those tablets as a memory of him. They now have computers or whatever that can help him communicate with you. God bless the time you and DH have left and lets hope that his suffering (and yours) is not too long and painful. Take care and God be with you!

Thanks for the update! That was quite a trip. I'm so glad that everything went well and you got to see so much. The western scenery is just magnificent!

I'm glad you went, memories of a lifetime. I nagged my dad to take mom on a trip to Europe he finally agreed when I told him that she would never go without him. They went on a 3 week vacation to Europe in 2012. Shortly after they returned dad's cancer became out of control and died 6 months after their return. At least once a week mom mentions that last trip. Great memories for her.

I wish you two the best!

To those who encouraged us to go nearly a year ago profound thanks. We did it! Went to Mt.Rushmore Yellowstone (amazing!) ; the Utah national parks. Grand Canyon and Albuquerque Baloon Fiesta and Santa Fe. Back to NJ for a while and in FL this winter.

DH with ALS did all the driving without problem. Trip of a lifetime!

So again to those who encouraged us to go many thanks. And to those with disabities who
wonder whether you can or should go. Do it if you can.

It was a magical experience!

Go have a great time.

My DW has MS and sometimes it can be a challenge. But modifing the motorhome, lowering the bed, shower enrty, making toilet area more accessable. Has made things better.